Updates below are through7/26/2007
UPDATES ON PAYTON
We can’t thank everyone enough for all the support, thoughts and prayers that we have received from our family, friends and community. We are overwhelmed with the outpouring of affection for Payton. She is truly blessed to have so many family and friends that care so much for her. She is a fighter and has been unbelievably strong throughout this ordeal. Our family can’t thank each and every one of you individually. but please know that we truly do thank you all for everything you have done (especially the prayers).
Payton came home yesterday after the Neurosurgeon said that she was doing well. She would do better at home and all we were doing was waiting for the pathology report to come back. We have our appointment on Thursday to meet with the neurosurgeon and to hopefully get the pathology report back as to what we are dealing with. Payton has been so brave and so much stronger than we have been. One of our biggest thanks has been to our ER doctor, Dr. Morelli, he truly saved our daughters life. He pushed for her to have an MRI and found out that she had a tumor, when we were only thinking it was rheumatoid arthritis. Six days later he is still calling to see how she is doing.
She has had such an impact on everyone that sees her and comes in contact with her and even those who just hear about her.
At this time she is playing, loves being home, loves her chocolate, her friends and sisters. We have a hard time keeping her off her feet to rest her back which she paid for tonight because she is so tired.
We will keep updating this site and again want to thank everyone for your support and prayers.
Holly, Patrick, Savanna, Sydney and Payton.
Hi everyone, this is MiMi, Payton’s grandma. I too would like to thank everyone for your prayers and support. Payton has been such a brave little girl throughout this entire (is it only a week?) time. It seems like an eternity since I got off the Plane from Pittsburgh and took her with her Daddy to All Children’s Hospital in Tampa. We thought we were dealing with rheumatoid arthritis, or diskitis, as our dear Dr. Morelli, the ER Doctor supposed. It was due to his perseverance and excellent diagnostic skills that pushed the MRI that found the tumor on Payton’s spine. The neurosurgical team came to the hospital an hour latter, reviewed the MRI and told us that they didn’t need to do surgery that night, but would schedule it for the next day! WOW! Of course, they were worried that the tumor was causing nerve damage.
Have we also mentioned that my daughter, Holly, Payton’s mommy, was, herself, in bed at home with a terrible stomach virus that left her unable to even stand up straight. She really didn’t feel good until Sunday. Mimi had to keep calling Holly’s doctor in Sarasota, for all kinds of drugs! At one point, we thought we would have to take her to the ER.
So far, everything is much better. Payton is home, playing with her sisters and friends and there has been such an outpouring of love that is has left me breathless. Payton’s other grandma and grandpa are still here, PaPa Porter went back home on Sunday. I have taken a leave from my job back home to help hold down the fort. Holly’s sister Kym and her children will be coming for Memorial Day Weekend to give everyone hugs.
Thursday is the big day. We will see Dr Storrs, the neurosurgeon then and will hear the pathology report. Please pray that we will hear good news.
That’s all for now. Love to all…..MiMi
Hi Everyone, Well we went to the Doctor today. We finally got the Pathology Report back and have a diagnosis of Primitive Neuroectodermal Tumor or PNET. We have been referred to the oncologists at All Childrens, and they are scheduling staging tests for Payton. Probably tomorrow. I have calls in to professionals that I know, one of whom is a Neuro Oncologist in Pittsburgh. If anyone knows anyone who is a Pediatric Neuro Oncologist, in Johns Hopkins, or Dana Farber, or elsewhere, let us know, as we want to get another opinion on treatment options. So far it looks like Payton is facing Chemo.
Payton is so full of life and happy. She has no idea what is going on. She doesn’t know why her mommy is crying.
That’s all for now. Please continue to pray for Payton and her mommy and daddy.
This is a very important week for Payton. She is going through several tests, including a CT scan, chest x-ray, PET scan, bone marrow, labs, and insertion of a port in her chest to admin chemo. We also should find out tomorrow whether the cancer has spread anywhere else. Praying it has not. She is going to need 8-9 months of chemo, every 2-3 weeks. The chemo will last for 4-6 days, so we will need to be in the hospital for that length of time every 2-3 weeks. She will also need radiation therapy that we will need to be out of town for 2-6 weeks, either in Gainesville or Harvard. This is going to be a very long and tough year for Payton, but she is very strong and will make it through everything.
We truly appreciate everyone’s thoughts and prayers for Payton and our family. Please keep her in your thoughts.
Thank you to all.
Patrick and I wake up every morning and are so touched and grateful for all of our friends and family. We are overwhelmed by the pouring of prayers and good wishes. We can not possibly thank each and everyone of you enough for trying to help my baby. Patrick and I are very scared about what we will be finding out on Thursday. She will be having the last of her tests (the bone marrow) as well as her placement of her chemo port. We never thought we would be looking forward to the day she gets chemo. We want it started before this horrific disease takes over. My daughter is so brave. I wish you all could be here to witness her strong will. Savanna and Sydney are doing Ok. My Sydney girl is having a harder time with everything. We do alot of therapy play to get her to express herself. I know alot of you have not only said prayers for Payton but also to our family. Thank you for that. My older girls are also scared for their sister and are so young to really understand the process. I am in such a cloud so I am sorry if I repeat Patrick on the updates. My mother and I will be going to Philadelphia with Payton hopefully June 16th to see a world renown doctor that has done many, many, studies on the type of cancer Payton has. He will be guiding her treatments. He needs to physically see her in order to provide the treatments. Payton will be treated at All Children's but the doctor from Philadelphia will be calling the shots. I also wanted to let all of you know that I am a very tearful mother. I apologize for not being able to communicate via telephone to some of you who have called. I try very hard to keep it together around my girls especially my dear Payton. However, when I get a few moments I am usually in my closet crying. I know how dear all of you are to me and I know and hope you understand. I promise I will try to get the phone calls coming, just give me a bit of time. Patrick has been wonderful with communicating to you all. Please know that he speaks for our family. I am not one to ask people for anything, however, I need all of your support and prayers. My baby girl needs all the thoughts and prayers you can give. Thank you all for everything.
All my love and prayers to all of you
June 2, 2006
We are so blessed to have so much support from family and friends throughout the country. And those of you in our community who have overwhelmed us with love and support as well we thank all of you.
GOOD NEWS! It couldn't of come at a better time. We got home about 8:30 PM last night, Thurs, after getting to the hospital at 5:30 AM, very long and emotional day. Payton had surgery at 7:30 AM to place a double lumen port under he skin in the upper left region of her chest. She also had two incisions in her lower back to extra bone marrow. She was a trooper yesterday and up and walking around 20 min after the surgery. Although very tired, sore and cranky most of the day. The doctors gave us good news though for the first time in 2 weeks. It doesn't appear that the cancer/tumor has spread! We are not 100%, but so far it looks good. The bone marrow extracted yesterday, at least first glance appears to be free of any cancer cells. The PET scan taking on Weds looks good as well. We were concerned about two spots on her lungs, but they look to be collapsed air sacks from the anesthesia. Still getting no sleep, she was up all last night again and threw up in our bed at 5:30 AM.
We thought they were going to start chemo today and still might, but looks more like Tue/Wed of next week. She looks very week this morning, but she didn't have anything to eat for 20 hours yesterday and she hasn't slept through the night in almost 3 months. We are going to try and get her strength up this weekend. We still have a very long road ahead of us, especially Payton. But as you all know she is a fighter and you can see by the video on her web site that she is indeed. My office and I will continue to update the site as we can. Please feel free to pass this on to anyone who is thinking of Payton.
Thanks doesn't seem to say it all, but know we appreciate you all.
Patrick and Holly
JUNE 8, 2006
The pathology report finally came back with what type of tumor/cancer Payton has. It is called a Medulloepethelioma tumor. This is a type of brain cancer even though her tumor is not in the brain, but the Central Nervous System, CNS. The reason it took so long and why there has been disagreement from Pathology Labs throughout the country is that it is so rare. CHOP only has seen this type of tumor 2 times in the last year. Children's hospital in Houston has seen it once in the last 3 years. It probably happens or is reported less than 10 times a year. Unfortunately, there isn't a specific trial that can be compared to what Payton has, but the doctors have narrowed it down to 3 protocols. They are deciding this morning which to go with and will start chemo today with a road map.
This tumor is very aggressive, more chances of reoccurrence and harder to cure. We will need to go to Boston for radiation treatment within the next couple of weeks for a 6 week period. They have a Proton Beam which is the best way to administer radiation with the least amount of complications. Holly will be staying for the entire 6 weeks and I will be going for 2 weeks or so. Family and friends will be helping by going for short stays as well. I am going to stay back with Savanna and Sydney. Holly is really having a hard time with this and so am I, but we are staying strong and keeping the faith. Payton continues to amaze us with her strength, personality and smile.
Keep us in your thoughts and prayers.
Patrick and Holly.
As many of you know Thursday was a day that Holly and I will never forget. Holly and I are in the battle of our lives to save our youngest daughter Payton. She has, as I stated earlier a very rare and malignant tumor. We didn't actually realize the severity of this tumor until Thursday afternoon when we spoke with Payton's Oncologist. Her doctors cautioned us that she is in very grave danger of not surviving. I truly can't believe that I am actually updating my family and friends that our 4 year old daughter may not make it through this. Well after being very upset and just feeling like you can't imagine, Holly and I are getting tougher, going forward and we are fighting for her in every way we can.
Payton's chemo has been started and it is very aggressive. She will endure many different kinds of chemo at high doses along with other drugs to offset the side effects of the chemo. She will start with 3 course of chemo, probably during the middle they will do another MRI to determine if the tumor is shrinking. Dr Phillips Neuro Surgical team at "CHOP" in Philly will look at her latest MRI and get a plan together for surgery. The surgery could take place during the 3 courses, but most likely after. The surgeons still need to decide if the tumor is operatable. Then we go to the radiation stage. Still hoping we get to Boston, Indiana or Loma Linda in CA for the Proton Beam Therapy. I am very nervous about radiating Payton's brain. I am fighting to get her to one of these three Proton Beam facilities.
We continue to thank you all for your support and love.
Patrick and Holly.
We thought we would be bringing Payton home today, but found out this morning that she has a fever. This means that she has a minimum of three more days in the hospital. As long as it doesn't become a bacterial infection she can come home after that, if it does become bacterial, she will need to stay another 7-14 days. Payton has already been in the hospital since Wed the 7th.
She started chemo on Friday the 9th. Methotrexate and Vincristin. Her Methotrexate levels stayed to high for three days so because of the levels, it delayed her next set of chemo drugs, so we ended up behind a couple of days. We got through last week with Payton feeling crummy. She has mouth sores, won't eat, vomiting alot, week, and very cranky. She can't walk very far without becoming fatigued. The nurses had to deactivate her port twice yesterday and put it back in. If you have every seen this happen to a 4 year old you know that it is not a pleasant experience. The needles look like nails. We just want to get her home for a few days before she has to start the next course of chemo.
Holly and I both want to continue to thank everyone for the support and prayers. We can't possible thank you all individually, but know we truly appreciate it. Again the support has been overwhelming. It appears to us, an entire country has rallied around Payton, not just her friends and family.
We will be back soon with any further developments.
Love you all,
Patrick and Holly
Hello everyone! Here is an update on our Payton. Today is Sunday and she continues to have fevers. All her tests have come back negative for infection but since her blood counts are low it makes it very difficult to find out what is causing her fevers. Payton has to be fever free for three days. We are ALL very frustrated. She wants to be home so badly. Payton had x-rays on her chest and abdomen on Saturday to see if they can spot any infections. If they can not, then today she will get a CT scan to try to pin point why she is continuing to have fevers. On Friday night Payton was found by me her mother out of her bed and trying to pull out the tubes from the machine. When I questioned her, she said "I am done with this place and I am getting out of here"!!!!!! She will ask me numerous time a day to spy on the doctors and nurses so that I can sneak her out of the hospital. As all of you can see, Payton is still a handful (which I love more than anything especially during this time). On Monday, Payton will go in for surgery. She will get a cath put in at her neck or chest area in order for them to do the stem cell harvest sometime this week (tues, wed, thurs)? This procedure will take between 1 to 3 days. She is due for her next set on chemo on Saturday. However, the doctors want Payton to be stronger so they are delaying the next set for a few days. I am hoping that we can at least get her home for 2 days. My mother will be taking the older girls to Pittsburgh from July 3 to 11th. Savanna and Sydney are doing ok. They are worried as all of us are and we are working very hard to help them through this. Again, Patrick and I can not thank all of you for your prayers, well wishes, donations, gifts and meals. We feel so blessed to have so many people care so much about our family. It means to much to us, I don't know how to thank each and everyone of you. Please know that we appreciate everything you all have done and it touches us so deeply. The one thing we will continue to ask of each of you is to keep praying for our little Payton. Thank you again for everything.
Well by the time we wrote the above update, things have changed again. I guess we just have to get used to this. Her white blood counts are just too low to have the surgery for the Stem Cell Harvest. So the doctors have delayed it the surgery to put in her catheter. They think they have found the infection which is causing her fever. It is in her gastro area. She is on a different course of antibiotics today and we hope to see improvement in the next 2-3 days. Yesterday was tough for Payton. She had to have her port removed and put back in. Her skin is very red on her chest where it is and just looks terrible. She also had to have a tube put down her nose to her stomach so they could get a dye through her system for another CT scan. This was done to confirm the source of the infection. She was a trooper, but very unhappy yesterday and Holly tells me today isn't much better. I am on my way back to the hospital for another night with Payton soon.
Thanks and love to all,
July 1st, 2006
I spent last night with Payton and she did pretty well. It is so hard for her to sleep through the night and me as well. The bell on her infusion pump seems to go off every 15 minutes. Payton’s white blood cell counts came up a lot they are in the 500’s now. She still has pain in her abdominal area and her throat now hurts, because she has the white blood cells to go after areas that may have been inflamed or irritated from her nausea. We are also trying to wean her off of the pain meds because it is making her very irritable. I guess we all would be if in her shoes.
Monday is still on for the surgery to put her catheter in for the Stem Cell Harvest. The harvest should be Tuesday, Wednesday, or Thursday of next week. We hope earlier, because the doctors said they would like to send her home for a few days before the next round of chemo. I hope it is for more than 2 days, I just think it would be cruel to bring her home for a day and take her back again for more treatment. She is still very week and we are working with her to get up and moving around.
I know many of you are working on different things throughout the country for Payton and we truly appreciate it. We continue to take this a day at a time and work to do whatever we can to heal Payton.
Thanks to everyone and we appreciate you all,
Patrick and Holly
July, 6, 2006
Hello everyone. I have pasted several new pictures of Payton on the site. You can look at them by date, the new ones are 6/7/06.
The machine in a couple of them is the Stem Cell Harvest machine we have been talking about. Payton had the harvest yesterday and we thought we would be taking her home this morning. Well as usual,,,,we are still there with her. They weren’t able to get enough Stem Cells with one treatment so back at it again today. They are very hopeful that she will be able to leave the hospital finally this evening sometime around 6:30-8:00 PM. She just can’t wait to go to Brewsters to get some ice cream and see Tony and Lisa’s dogs. So that is what we will be doing soon….cross your fingers. Payton is so tired of being at the hospital, 31 days so far!
Last night was a tough night for her, again the nurses had to take out her port and put it back in. This is one of the most traumatic things she goes through and she hates it. But her spirit is pretty good and all she talks about is going home.
Thanks again for everyone’s support, thoughts and prayers.
Patrick and Holly
July 6, 2006, for now, maybe the 7th, by the time I am done writing this.
What a night! We finally got Payton home to a house full of balloons and banners. (thanks Lisa, Ashley, Thomas, and Jacob) Payton was so excited to get home and you could just see it in her face. She had to go through a lot of pain to be released, but it was worth it for her. The doctors and nurses took out the catheter in her jugular and the port in her chest. This took an hour or so to do and was very traumatic for Payton. Even I, who typically can handle most of this, was surprised by the size of the tube that was in her jugular.
We are going to enjoy the next couple of days and just relax.
She has a tough week ahead of her. Her port isn’t functioning correctly so the doctors need to do another surgery and take the old one out and put another one in on Monday morning after her MRI. Can you believe it! Another surgery! One day at a time,,,,,one day at a time I keep telling myself.
I wish you all could see her tonight. Just lying in her own bed, curled up like an angel. Holly and I just stared at her and thought how peaceful she looked and content to finally be home.
I haven’t slept in since Tuesday night and am about to crash hard. My eyes just burn and I am ready to hit the sack. But, wanted to share with everyone how happy we are to have Payton home.
Love to all,
Patrick and Holly
Hello everyone. Payton has been home since last Thursday. She had surgery on Monday and an MRI. The surgery to put a new Port in was successful. We had good and bad news from the MRI. Payton’s main tumor looks to be shrinking, which is great, however, it has now spread to her brain. The spots are small, but there looks to be two spots. We are now trying to get her to Boston for radiation (Proton Beam). They want to do this to stop the spreading and kill the tumor in her brain. This isn’t unusual from what the docs are saying. We knew that chemo would not really get to her brain and that we would need to have radiation. We are just hoping that this might be a blessing that this is happening and she is meant to have it done right away. I understand that Dr Nancy Tarbell from Boston is a very good Neuro Oncologist who is going to look at her MRI and lab work and let us know when we can start Radiation. We are doing what we can to make this happen for her as soon as possible. I really don’t want to wait to get this done and am trying to get this moving as quickly as possible. We are just in a holding pattern right now, which you know I am not doing very well with….
Payton is doing pretty good being at home and is having fun with her sisters. She is still very week on in her left leg. I have some pics to have Nikki get posted online for you all to see soon. Please keep her in your thoughts and prayers.
Love to all,
Patrick and Holly
P.S. I wrote the above last night while my eyes were burning from being so tired. After reading it this morning, not sure how much sense it makes. Anyway, I wanted to also say that I pasted a bunch of new pictures of Payton. She really is a peanut!
July 16, 2006
Well today is Sunday and we are preparing to be at Gainsville tomorrow to talk with the pediatric radiologist. We are hoping and praying we will be sent to Boston for her radiation very SOON. Payton had a great week at home. She is walking by herself and eating a ton!!!!! This week was needed for her and us. We want to express our gratitude to everyone for their concern with Payton. Patrick and I recently learned that there are some erroneous statements being made on the internet. I first want to state that we put THIS website together to share with our friends, family and those who are truly concerned about our precious daughter. We wanted everyone to be kept informed of her progress. Even though we would like to, we are unable to call each and everyone. We do not expect ANYTHING in return except your prayers. I only want positive comments, thoughts and well wishes for Payton. My daughter is going to fight this and will in my heart RECOVER. Please do not believe anything you hear or read unless you read it from THIS WEBSITE/US!!!! Again, we want to thank everyone for giving Patrick and I the support we need to fight. As always, we love you all and we will continue to keep you informed.
All my love
Hello everyone, it's Payton's Mom again -
Well I am here to write an update for Payton. As you all are now aware, everything about Payton's treatment has changed by the second! So as of right now this is the scoop. Today is Friday afternoon. We just returned home from All Children's. We are going to Duke Medical Center this Monday to carry out Payton's treatment. Even though it has not been confirmed, we are going on the assumption that the cancer has spread to Payton's brain. Therefore, we are going to Duke's Brain Tumor Center. From what we heard and researched, it is one of the best. We will find out on Monday what type of treatment will be next for Payton (chemo, radiation...) I don't have any idea how long I will be at Duke. It is very much up in the air until we speak with the doctor's at Duke. We were turned down for Proton radiation at Boston and California due to her diagnosis. They don't want to give up a spot for a "risky" diagnosis. I have my own choice words for those people at Boston and Ca. !!!!!!!!!!!!!! Anyway, I am actually feeling much better about this plan because we will FINALLY have a plan. Also, Payton had a CT scan today. It was fine. A few veins were inflamed but they feel that is from the trauma of all the chemo she received. We are becoming concerned with Payton's left leg again. She has a great deal of difficulty walking on it again. The therapist in me is thinking it is due to her horrible gait. She has been walking allot and only on the side of her foot. She has not been able for months to walk with her sole planted on the floor. Therefore, I think her ankle and different areas of the foot are feeling the stress. I do hope that I am right on this. The rest of Payton is great. She is laughing, playing and driving us crazy with her feisty self (we aren't complaining). I know that I say this in my updates, but I need to stress to all of you again -- thank you. This is a nightmare that I pray no parent has to face. We try very hard to be positive and hopeful but it is getting harder every day. I am not kidding when I say that every time we answer the phone or go to the doctors, it is always the worst of the worst. I know a lot of you don't know it, but there are several times Patrick and I may come across looking like we are doing ok. but are screaming/dying inside. So many of you would make a statement or talk to us in such a way that it brings us back again to being positive and hopeful. To everyone who writes into the guestbook, we love to read your messages. We need to be lifted up because this CANCER is not only being destructive to Payton's body but to our souls. My deepest thank you to all for your uplifting statements, comments, and just being there for us. It keeps us going in the right direction. Please keep the prayers coming, I am so believing in the power of prayers. I hope Monday will finally be positive for Payton. Until then, thanks you and we love you all.
I added some new pictures today and tried to add a video. The file was large so it may not of worked. Hope you enjoy.
I just added few pictures of the blanket Dot and Pam made for Payton. It looks awesome! Thanks so much to the both of you and to everyone that sent in squares. I think there are still more so they may be making something else.
Patrick and Holly.
Today is Tuesday. We are at Duke! We will be doing our treatment at Duke. The experience was unbelievable. From meeting with family services to our new doctor, Duke is our place to make Payton better. I will give you the info we were given yesterday, but keep in mind things are always changing. At this point, we may be starting a new chemo on Wednesday. He does not want to do radiation just yet, and give chemo 1-2 cycles. Then start radiation. He will be reviewing the MRI's with their radiologists. He also is having her diagnosis reviewed at Duke. Our doctor wants to try a new plan. For the first time in this horrible experience, I feel that I am at the right place. Our doctor came in to our room and didn't have the look of "you sorry parents....don't you know your child is terminal". Instead he came in and stated "I will do everything I can to help your child...I can not make any promises...Payton does have a very rare cancer...but I will do everything I can to help". That was all I wanted from a doctor. Patrick and I are fighting for Payton. She is not a case number, she is our 4 year old sweet little girl. This doctor is in our corner. What more can I ask for!!! Patrick may be back this weekend. I hope to be back before the girls go to school. But again, I don't have any expectations anymore. Please keep your prayers coming. I believe so much in the power of prayer. As usual, I want to give my sincere thanks to all. Your uplifting messages and prayers are so needed. I wanted to add a big thank you to Evelyn for the making of Payton's blanket. The blanket was so beautiful and the time Evelyn, Dot and Pam put in was amazing. Thank you again for a cherished gift. Also, we need to thank the Buckley’s for allowing us to stay in their home while we are in NC. We also, need to give a huge thank you to the Doniger’s for arranging Payton’s flight to NC. We rode on a private jet and Payton loved it!!!! I would love to thank each and everyone for all of their gifts, thoughts, and prayers. We are overwhelmed with the kindness you all have shown. We have received gifts from children that mean so much to us. Please tell your children how much we really appreciate their contributions and thoughts. We love you all so much. Please know that we are so blessed to have you in our lives.
We love you all
Day two in the hospital at Duke. So far going pretty well. Payton is eating and going to the potty often. She is being a brave little girl even though she is scared and already tired of being here. We are still hoping to be out of here and on our way home Sunday morning. Mimi is holding down the fort at home and staying with Savanna and Sydney. Payton is receiving 3 different chemo drugs this time and Dr G is going to get creative with her care. He is giving it all he has to cure her. We believe for the next several courses that it may be administered as an outpatient. So we may be home for awhile. So for any of you coming to Florida for the golf outing or 5k, you hopefully will get to see Payton as long as her counts are up. Uncle Bzer and Gina are here today visiting Payton.
We are flying out on Southwest Sunday and hopefully she will be fine for the flight. Dr G said that her counts where now up enough that it should be OK. We will probably make her wear a mask though. Her counts won’t start to come down until 7-10 days after her chemo treatment started. Everyone at home will have to know that probably next week some time she will be very vulnerable to getting sick. So we may have to isolate her for a few days. We will keep everyone updated as to her counts.
Thanks as always to everyone out there.
Patrick and Holly
Aug, 1, 2006
Hello everyone. We were able to bring Payton home from Duke on Saturday. We got home around 11:00 PM. The plane ride went pretty smoothly. Payton slept most of the way and we kept a mask on her as best we could. She is all about timing. Once we got off the plane and were in the airport she started to let it all out and vomited. Sunday, was more vomiting, the chemo makes her pretty sick. She is in very good spirits until we have to give her a shot or medicine. Then the tiger comes out in her. Yesterday she was in Tampa most of the day getting an MRI and having blood work done. She was a real brave little girl. She didn’t even cry when the nurses accessed her port. She just said that wasn’t too bad… Then she walked over to the door of the MRI room and said OK mommy I’ll see you later, I am going to get my pictures done now. She continues to amaze us every day of her strength.
Payton’s neuro doctor G is continuing to monitor Payton as well as Dr Aung in Tampa. So far she is scheduled to have another round of chemo in 3 weeks, but as an outpatient. So we should be home for a few months. However, this could change depending on how her MRI’s look in the next few weeks as well. They will need to monitor the tumors and hope that they don’t continue to grow. If they shrink she will continue with chemo, if they don’t we will need to get her to radiation sooner. We truly are praying for her to respond well to the chemo.
We are truly blessed to have so many people to have been touched by Payton in some way in our lives. We continue to read all that you all have written in her guestbook online. It is a great way to be inspired everyday and as Payton says, “It’s going to be a good day!”
Love to all,
Patrick and Holly
Aug, 1st 2006
Today is Tuesday the first of August and three months into this fight. Payton is doing fairly well. I know Patrick sent an update earlier but I wanted to add a request and as always give my thanks and gratitude to all. I was talking with Lori Bollinger today and she stated she needs volunteers for Payton's Party Walk/Run. If anyone is willing, please email Lori at email@example.com. I have told many that my hope through all of this is to increase the awareness for childhood cancer. I am so touched and proud of each and everyone of you who are putting these events together and who are participating. Payton's illness has changed our lives forever. We will always be fighting even when Payton is better...because childhood cancer is worth the fight. Payton is having a melt down and wants me to read to her. Thank you again for all you do and the prayers. Please keep praying. I love you all!!!
Aug 2, 2006
I just added some pictures most from our trip to Duke. Most of Payton and her best buddy Brooke and her mom Dina. Several were taken at our new friends home Brian and Helen. Also pics of uncle Brian and Gina. One of the pics is of Payton lying on the floor sleeping. She looks so peaceful. She went there with her pillow to watch her sisters in the pool and fell asleep. Hope you enjoy.
Love to all,
Aug 6, 2006
Hello everyone. Holly will be giving a more detailed update later today or tonight. But, I wanted to say something before I head back to the hospital. Yes, Payton is back at All Children’s in St Pete. She developed a fever yesterday afternoon and we took her in and she is required to stay for 72 hours. So we will be there with her for the next few days. She isn’t very happy about being there, but she is hanging tough. I wanted to thank everyone again for doing so much for Payton and all of us. The community we live in Lakewood Ranch has been so supportive and we truly appreciate it. I want to also thank Dick Vitale, Terri Vitale and his entire family for what they are doing for Payton and children afflicted with cancer. We can’t wait to “pay it forward” once Payton is better. Not only the Vitale’s but also all of our friends and family who have done so much for Payton are true inspirations to Holly and I. Our life has changed forever and we will not stop fighting for Payton and this terrible disease. I can’t wait for Payton someday to realize how she has brought so many people together and see the impact on the lives of so many. I know she will feel as humbled as I do.
Again thanks to all.
Today is Sunday, I think the 6th. My days are running into each other. Payton had to go into the hospital yesterday due to a fever. However, once we got her to the hospital, she has not had a fever since ( knock on wood). I know I probably cursed myself. Payton is doing OK. She isn't eating very much and is not too happy to be in the hospital (who could blame her). When we got to the "oncology" floor the nurse asked her what room she wanted. I couldn't believe it, but she chose the same room she had for 30 days. She said she liked the animal wall paper boarder. As usual, she is making her money on thumb wrestling with the doctor's and nurses. I think at this point she has made over $30.00. This has been a very hard week on me. For some reason, I can't stop crying. I hope my positive outlook comes back. I need it for my little girl. We were told the MRI on Monday showed increase in spread of the tumor. I did not ask how much or where, I felt what difference does it make. I need to pray harder and put my hope and faith into play with God and the doctors. I hope Dr. G at Duke is my helper in getting Payton better. As I have stated over and over, I believe in the power of prayer. Please, Please, Please Pray for Payton. My baby needs every prayer out there. I know I was given this angel but I don't want to give her back yet. Patrick and I are continuing everyday to be overwhelmed and amazed by people. I know I wont be able to send thank you cards to each and everyone, but please know that Patrick and I appreciate and are grateful for all you have done for us and our family. We are dedicated to fighting for not only our Payton but for all children with this horrible disease. My in laws (Linda and Kenny Wright) just had a fundraiser in Fredonia, Pennsylvania (Patrick's hometown). For a small town, my in laws stated there were hundreds of people supporting our daughter Payton... many have never met her. Thank you to each of you for showing support. I can not express my thanks enough. We should all rethink how we feel about mankind. The generosity and compassion people are showing is overwhelming and gives Patrick and I new eyes and faith on humanity. We do have a lot of GOOD people in our world. Especially in a time where all we hear and see is horrible news, this should reopen the minds of all of us to say, there is good in the world. Again, to the people of Pennsylvania, our sincere thanks and we truly appreciate all you have done for our daughter. To the fundraisers that are occurring in Florida… I really don't know what to say. Patrick and I are again overwhelmed by the effort our friends are doing for our family. We love you all and thank you from the bottom of our hearts. I am excited for the next few weeks to spread the word of childhood cancer and to help raise money for our daughter’s treatment. Our girls are our life. We are in fighting mode and wont stop till we win this battle. Thank you for loving Payton and helping us give her a chance. We love you all and are blessed to have such incredible people be part of our lives. I hope to write you on Monday to tell you Payton is coming home.
All my love for you all
Tuesday, August 08, 2006
Today is Tuesday August 8th. Payton is finally home. She is doing great today...she is eating and pooping!!!! We are hoping her counts will be ok by the end of this week in order for her to start her next chemo on Monday. Her disease is so progressive, we can't wait long between chemo treatments. We were just notified that Duke wants her back for her chemo treatment following this next treatment. I hope it will be a short stay as before. On Monday, school has started down here and I was very sad that Payton couldn't go to her new school. I remembered when Savanna and Sydney went off to Pre-K..Monday was tough for me. However, Ms. MaryAnn Hickey will be her Pre-K teacher. Payton's first day of home school will be tomorrow. She has already complained to Ms. MaryAnn about homework and states that she is only 4 and not 7 years old. Keep in mind we are dealing with Payton! I would like to share some news with everyone. I hope by now everyone knows how important Patrick and I feel about your prayers. We need some help with another child in our community. Please double your prayers for us. I don't want to go into this child's situation because I don't have the permission from his parents. However, this little guy is going to turn 9 soon and goes to school with our girls. He was diagnosed with a brain tumor as well. However, they were given very positive news about his prognosis. On this day, it is assumed it is benign and they don't have to rush for treatment. They have time to investigate their treatment strategies. This does not take away of the seriousness of his condition. When I found out my heart sank. I don't want any parent to hear that kind of news. He will be returning to school tomorrow. Please keep Payton, this child and his family in your thoughts and prayers....we all need it right now. Just another Payton moment for you all. While we were in the hospital with Payton, we found out this little guy’s family was in the hospital as well. Payton over heard me talking with Patrick on the phone and insisted that she find this boy and talk with his parents. She was allowed to be off of her IV for an hour. Mimi and I wanted to take her out of the hospital for a walk but she still insisted to find this family. When we found the parents, Payton was trying to in her own way to tell them that MRI's aren't scary and everything would be all right. She was so concerned for this child. I feel sometimes she is well beyond her years. She has also been this way with her sister Sydney when Sydney went to the dentist. She couldn't stop crying and hugged Sydney for at least 30 minutes. She felt bad that Sydney had a cavity. I will always be thankful for each and everyone of you. Thank you for your continued thoughts and prayers. Please keep this little boy and his family in those prayers as well. Have a wonderful week and I will update you soon.
All our love,
Patrick and Holly
Aug, 16, 2006
Today is Wednesday the 16th of August. We are three days into Payton's outpatient chemo. So far she is doing pretty good. She gets sick in the morning when she wakes up. This round of chemo doesn't have the severe vomiting side effect like the others. She is eating, drinking and of course pooping yeh!!!!! I never thought I would be so excited about bodily functions. Payton was able to meet Dick Vitale, his wife, two daughters, and granddaughter on Tuesday. What a family. He has helped with the Jimmy V foundation which has raised millions for cancer research. Mr. Vitale and his family are very passionate when it comes to fighting cancer. As I hope you all are aware, Mr. Vitale and his wife are opening up their home to raise money for Payton. Like MANY of you, Mr. Vitale and his family had never met Payton until yesterday. I am overwhelmed with how so many of you like the Vitale’s are coming out to support our daughter. I also wanted to tell you a story that happened today. While Payton was receiving chemo a family came in with their 16 year old son. He has a rare bone marrow condition that leads to cancer. His prognosis is poor, but they are fighting. I believe in miracles and have heard many stories of them. Anyway, there are 3 cases in the US that have his disease (him, his brother, and another individual). The parents are looking for a bone marrow donor. They have had bone marrow drives in Miami and here in Bradenton. So far out of hundreds the only one that is a match is his brother who also has the condition. They are looking for an individual with Spanish or northern Italy background. If you would like to learn more, this family also has a website which is www.caringbridge.org/visit/anthonynegrin. or COTA.ORG. As we were leaving the clinic the mother came out and stated she had just gotten off the phone with her twin 15 year old boys. They told their mother they had just signed up at their school to volunteer for a fundraiser for a 4 year old little girl with cancer in Bradenton. The mom said "I can't believe it , I am sitting next to her mom right now". She couldn't believe that her sons without prompting volunteered and we had just met for the first time. It is a small world. Also, I might add Lisa N. was with me. She is 100% Italian with her background in Northern Italy. We were able to get a doctors script and she went up to the lab and got tested to see if she is a match. Wouldn't that be something if she was! Through this horrible ordeal, Patrick and I find ourselves gaining more out of life than we ever thought possible. We pray none of you will ever have to experience what we are going through, but I do hope you all take something from this like we have. Helping others. We have seen this from so many, it's wonderful to see the kindness and caring. As I always feel and hope I get out loud and clear, we thank everyone of you for your prayers, thoughts, and gestures. It means so much. There are so many people we also want to thank who are putting on the weekend fundraisers and the cut a thon that is occurring this Sunday. There are so many of you I am afraid I might miss a name due to being exhausted. But please know we are so appreciative and grateful for all your hard work and love you have for our little girl. THANK YOU, THANK YOU, THANK YOU. We are so blessed to have you ALL in our lives. Please know you will always have our family in your corner at any time.
As always, we love you all
Aug 19, 2006
Payton is home doing well. She finished up yesterday with her 3rd round of chemo and is so happy to not be going back today. It was so nice to be able to bring her home every day this week and helped her cope with everything a lot better.
Holly and I want to thank McNeal Elementary and Linger Lodge restaurant for putting on the fundraiser for Payton last night. I also want to thank the band Liquid Courage for performing and doing such a great job! Also thanks to everyone who came to support Payton we can’t thank you enough. It was very nice for Holly and I to get out together. We don’t get to do that very often anymore.
I wanted to also share something with everyone. An amazing photographer, Heather Skau came to our house and has put together the most wonderful slideshow I have ever seen. Please take the time to look at it with plenty of Kleenex’s.
Holly and I are forever grateful to her for giving us this precious gift. We truly can’t thank her enough. She is an amazing person.
To access it, take this link: Catch A Star Photography or type in www.catchastarphotography.com/slideshows if the link doesn't work for you.
For password, type in payton0818, then click submit. It is case sensitive. If you have trouble getting it to load, try turning off the 'full screen' option, and also turning off any pop-up blockers you may have activated. It may take a little bit to load as there are a lot of images, but the slideshow will then start automatically.
Make sure you don’t have the little box checked under the line that you put in the password. Also have your volume turned on.
If you want to see more of Heather’s work check out her web site as well at www.catchastarphotography.com
We continue to thank everyone for all they have done and are doing.
Patrick and Holly
Aug, 24th, 2006
Today is Thursday August 24th. We just returned home from the clinic today. We left at 7:45AM and returned home at 4:00pm. Long Day!!! Payton's counts are dropping and she needed blood and platelets. Again she is a trooper. She doesn't cry anymore when she has to get her twice weekly finger stick. I am so proud of her and so sad at the same time. She is getting used to needles, blood and this whole nightmare cancer role. Payton last Saturday went to school for the first time with her teacher MaryAnn Hickey. She had a great time and it was nice having her be a typical 4 year old. Thank you MaryAnn for helping her be 4! However, she still tries to get out of her "homework" and complains all the time about learning her letters. I always get "why do I have to". We want to also thank the Yellow Strawberry for the cut a thon. We were so overwhelmed (I use that word a lot but its true these days) by the out pouring of support for our daughter. Thank you to the staff for your time and effort and all of you who came out to support Payton. What a community we live in. That old saying is true "It takes a village..." I am looking forward to this fundraiser weekend. I don't think I will be able to make it to the golf outing with Payton. Payton's counts are very low and it might be too much the day after her blood/platelet treatment. However, we hope to have her appear at the walk a thon. We will have one more week off and then we start another chemo session. On Thursday, Aug 31st Payton goes in for her MRI. Please, please, please keep praying for us. This MRI is meaning a great deal. I will probably start medicating myself on Monday in preparation for Thursday. Our stress levels will be high next week, so if Patrick or I seem off, please know why. For some reason, I thought we had more time before the next MRI. I admit I am terrified. As I always feel and hope get across to you all, thank you very much for all that you do for Payton and our family. We truly appreciate it!
All our love,
Patrick and Holly
Hello to all,
Today is Tuesday August 29th. Before I begin on our Payton, Patrick and I wanted to deeply thank all that put together Payton's fundraisers. We are so overwhelmed. You all did such an incredible job. You accomplished what Patrick and I wanted...to get out the awareness on childhood cancer. It truly showed how much you love Payton and our family. We will cherish this weekend forever. To all that showed their support, thank you. We hope to see all of you next year for Payton's Foundation. All of us should pat ourselves on the back for making a difference this weekend. The blood mobile and bone marrow registry was a huge success as well. To all who could not show up for the Payton's Party weekend. I will tell you there are no words to describe the events. On Friday, it was a packed house for golf. On Saturday over 5000 people came out to support Payton and our family. It was just incredible. And on Sunday at Mr. Vitale's home was just a wonderful way to end an amazing weekend of support. We can not thank the Vitale family enough for opening their home and raising funds and awareness.
Now to Payton. As many were aware, Payton had severe back pain over the weekend. We took her to the hospital on Monday in hopes it was constipation or muscle aches from her limping. However, an MRI showed that the tumor is still growing. We are devastated! We need to go to Duke by Monday for radiation and chemo. I am not sure how long we will be gone. At this moment, Payton is on Morphine, steroids, pooping meds and nausea meds. We are very scared and nervous for Payton. I think I needed a door bell on my closet door yesterday. Please keep praying for Payton. Everyone asks me what we need, we need prayers for her so desperately. This is another hard week for Patrick and I. Please keep our family in your thoughts.
We love you all
Today is Sunday I am not sure of the date. We are at Duke for Payton's treatment. As many of you know, last Wednesday Payton took a turn for the worst. She had severe back pain and on the way up to All Children's Hospital she lost the use of her left leg and bladder function. We air lifted her to Duke Hospital that morning. On route to Duke Payton lost the use of her right leg. At this point, Payton has had 4 radiation treatments in hopes to shrink the tumor on her spine. We hope and pray she will regain the use of her legs. However, no improvement has occurred. On Friday, Payton was given hours to live. I am so numb at this point I can not explain our thoughts to you at this time. We called in family and our friends to fly to Duke to see her. The doctors put a shunt in on her right side of her head to release the pressure in her brain. Things were stable but that night the shunt malfunctioned and Payton had to undergo surgery once more to replace the shunt. We have been blessed because she has been with us for two more days (thank god). Due to the pressure in the brain, Payton has to undergo radiation to her brain. All I can say is Patrick and I are afraid, scared and every emotion you can think of. Many have said that we have shown so much strength. I don't think I have anymore left....On a cute note about Payton, because I think you have all seen how strong Payton is...she is so exhausted and sore she puts her thumb up with her eyes closed and hardly able to speak, and wanted to thumb wrestle to win a dollar! My daughter has taught me and so many others life long lessons. We are not giving up because we have seen how much a fighter she is. My daughter wants to live and will fight every step of the way. Please help her in her fight and continue to pray for her. If you could spare an extra prayer for Patrick, Savanna, Sydney and me we would so appreciate it. Our family is so scared. We need your help. I hope to write better news soon. Until than, thank you and please keep the thoughts and prayers coming in for us.
All our love
Patrick and Holly
Sept 6, 2006
Well today is Wednesday. Payton is doing much better than the last update. I don't know how to explain to you all how much of a fighter our daughter is. We were very close to losing her Friday and here we are 5 days later. She is talking, playing, and trying to eat. She still eats like a bird and we desperately need her to pack on the pounds. She is able to occasionally feel her right leg. This morning, she was up at 4 am playing with Ms. Lisa (our friend stayed the night so Patrick and I could TRY to get some sleep...however I don't think we will sleep until she is better). Anyway, by 8:30 am she was getting sleepy and closed her eyes. I kissed her right knee and she said "thank you mommy for kissing my knee". I never thought those little words/comments would mean so much! Friday was a big eye opener for Patrick and me. We hope it will be for all of you. This child is not ready to give up and we realized that no matter what we will continue to stay strong, positive and fight right with her no matter what. Last night Patrick printed out 9 pages of new guest book messages. WOW! I can not thank you all for the wonderful inspirational messages you sent. It was what Patrick and I needed. I said this statement at the Payton 5K run/walk and I will say it again...how can we not stay positive when we have all of you in our corner...praying for her and keeping Patrick and I on track with your thoughts you send. I am not waivering on my belief...my beautiful little baby will make it. She will win! No doubt...No doubt...No doubt. Payton will be having a busy day today. This morning she will be starting school. Children that will be here for a while get educational services. I met her teacher yesterday. I hope she doesn't complain to her as much as she does to Ms. MaryAnn. Payton will also get PT/OT. She had PT/OT yesterday and sat up (with support) for a few moments. At 12:00, she will be getting an MRI of her brain and spine. I was very nervous and thought I needed to heavily medicate myself today, but for some reason, I am going with the punches. Payton will win this fight. I am believing in the power of prayer and hope in her being healed. That is all we have... After the MRI, Payton then goes for radiation. Today they are trying to make her wear her head gear. Her head mask is a mesh looking plaster that they formed to her face. How scary for a 4 year old to wear this mask that is pressed tightly to her head. We are going to play her INXS so she will calm down. We played INXS in the ICU and she loved it. So again, Payton is not your typical child. INXS rules for her! Then tonight she can eat and her day is over. I don't think any of us would like a day like she is having. The thing is, Payton not once has complained. She is our trooper and my hero. I am 36 years old and I look up to my 4 year old. What a brave and caring little girl. I pray every night that I can be blessed with the strength that she has. She is keeping us going. A side note to Dr. Morelli, Payton in ICU thumb wrestled and won 2 bucks. She has asked about you and is keeping up with her thumb wrestling skills so she can come back and take more of your dollars. I must get going, our trying day is about to begin. Thank you all for your thoughts and prayers, you know we love and need them. Make is a good day....It's gonna be a good day!
Patrick and Holly
Sept 8th, 2006
Hello to all of Payton's supporters,
Today is Friday. We did not have great news on Wednesday, but as usual we are still going forward. Payton's tumors in her spine did show a slight decrease, so we are trying to be hopeful that the radiation is working. However, the tumors in her brain have grown. Patrick and I again were faced with the question of "what do we do"? It was quickly decided for us. Dr. G called us that night around 9pm and said " you both fought to bring Payton to Duke...don't give up now. I am not surprised by her MRI and we will continue with our radiation plan". So with that statement from a Dr who is VERY much respected...we are on track with her treatment. Again, no one is giving up. Payton does so well with her radiation treatment. She listens to her INXS and doesn't complain about laying on a hard table with a tight mask on her face. What a trooper. Payton continues to work everyday to get better. She tries to manipulate everyone, especially the PT/OT. As a pediatric OT myself, I know you need to push...however, it is hard to do that with my little girl. I go to her therapies but have started to stay outside the room. As a mom I just want to hold her all the time. As a therapist, I want her to work all the time. Do you feel the conflict I am creating for myself! I think all moms know what I am talking about! Today our girls came up to visit their sister. Oh was Payton excited. Our dear friend Mike Ortiz drove my mom and the girls up last night. It was a 12 hour drive! As I always state, Patrick and I are so blessed to have such awesome friends. We have had visitors come from all over to give us support. Payton continues to feel certain parts of her lower extremities throughout the day. Unfortunately it is not consistent. This morning Payton stated "mom you need to change me...I pooped". And when I looked, she did. They are trying to determine if she can get any control of her bladder, so they are putting a clamp on her cath for 4 hours to wait and see if she can tell if she has a full bladder. We have a long road ahead of ourselves, but have understood to love and embrace the small miracles that occur with Payton. Patrick continues to print out the guest book messages and we are so grateful to you all for giving us such encouragement and hope during this time. Please know it means so much to us to read your messages. There are so many of you that we have not met and to send us your good wishes and prayers...thank you! Also, the Smith family sent Payton a cheer leading bear with a ton of balloons...they don't know her and had to do some leg work to find out where to send the gift. Thank you so much for this uplifting present. Payton loved it so much. I also want to thank Samantha Robinson's mom for getting me a lap top computer. It has a built in web cam so now we can see our girls while we are here at Duke. As we always feel, thank you for all you do. Keep the prayers coming.
All our love
Holly and Patrick
Sept 12, 2006
Hello Payton's supporters!
Today is Tuesday morning. Payton is stable for the moment. She is gaining weight (mostly due to the steroids) and is getting a round face. She wakes up every morning at 2AM to eat and watch movies. She doesn't go back to sleep until 9:00am. Therefore, there is no sleep for Patrick and I. We are SO TIRED! We are trying to keep her food to a minimum so she doesn't get too bloated. All Payton thinks about is food, food, and more food. It's driving us crazy! They wont decrease her steroids for a few more weeks due to the larger tumors in her brain. They are pushing on her spinal cord which causes her heart rate to drop. She continues to feel her right knee and toes, but nothing on her left. Payton misses her sisters so much. She doesn't understand why they can't be here. It is hard for her to understand distance. But we are hooking up with our web cam which will help her at least see Savanna and Sydney. Our girls are having a hard time as well with mom and dad being away. We are thankful that they continue to do very well in school and we make sure we talk with them before school and at night right before bed. Patrick and I are having some bad days (emotionally). It is very hard to explain to all of you what this is like. We are away from our girls for 6 weeks and have constant worry not only for Payton but for Savanna and Sydney. We always are praying, and trying to maintain strength/support for each other and Payton. However, it is exhausting. I miss my closet!!!!!! I have to say this again, your guest book messages are really helping. We read them to Payton every night. Payton's day continues to involve PT/OT, radiation (with INXS) and school everyday. She is doing much better in OT/PT. She continues to try to manipulate everyone and do the least amount of work she can get away with. Thank heavens she has tough people working with her. Payton has received several gifts while we were here. Thank you for thinking of her. I am sorry that I can't get out thank you notes, so please accept my sincere thanks for her gifts. I also received messages about people wanted to help Payton's Foundation. I just wanted to let everyone know that Monty's Pizza on University will be having a fundraiser on Oct 21 from 12-5 for eat in or take out. I will try to get more info on that. Also, there is a cut a thon for Payton at Shaggys Hair Studio on Sun Oct 8th from 11-3. I want to thank everyone for continuing to support our Payton and promoting the awareness of childhood cancer. Thank you again, for all the support. You all are so wonderful. You are keeping us strong and focused. Make it a good day, it is gonna be a good day.
Love to all,
Patrick and Holly
Sept. 15, 2006
Sitting here in the radiation waiting room on the computer and have a few minutes to catch everyone up. Payton is doing pretty well. She is having some issues with the steroids they have her on. She is eating alot and gaining weight which is a side effect from the steroids. So is swelling, crankiness and nervousness. Payton continues to surprise me every day. She is so strong and courageous! More than two weeks now at Duke and just now starting to complain about being here. We have probably 5 weeks or so to go with the radiation treatments. She misses her sisters and home so much. Her feeling in her legs comes and goes. We are still hopeful the feeling will come back and she regains her movement. OT and PT are working hard to get her in shape.
Holly and I are truly grateful to all the support we have. It has been tough to be here and live at the hospital every day. We take turns on who stays with Payton and the other goes back to the hotel around 9:00 PM every night and back at the hospital at 7:30 AM. It is getting old, but we think of Payton and how she is handling it and makes our discomfort seem so small. The last few days have been tough for us. Not sure why, just probably tired. I am sure that is it because we miss Savanna and Sydney so much plus so consumed with Payton we are running thin.
We continue to have visitors and help while we are here which is great.
Again thanks to everyone for supporting us.
Love to all,
Patrick and Holly
Sept 18, 2006
We want to thank Jack and Donna for coming to see Payton and us this weekend. They were a big help. The weekends are a bit boring because there isn't any radiation or therapy treatments scheduled for Payton. So we end up just hanging out in her room, the cafe or pushing her around the hospital in her wheelchair.
Payton is at PT/OT now, it is about 9:45 AM on Monday morning. She will be there for an hour or so, then a break until radiation therapy in the afternoon around 2-3 PM. She usually gent's tired after that and takes a nap. We are getting the routine down pretty good. Holly and I are becoming pretty used to hospital food, lack of sleep, hospital pump alarms going off all day and night, her heart rate and respiratory alarm going off as well, nurses coming in and out all hours of the day/night, watching Sponge Bob Square Pants, Jimmy Neutron, Wiggles, and every other kids show on tv all day and night. I could actually right a book about what goes on in here and I might some day.
All those things are really not a big deal though. I was walking down the hall towards her room this morning after coming back from the hotel and her door was open. I could see her from 30 yards away sitting in her wheelchair eating breakfast. I just started smiling....and yeah this is dad, so I had a bit of a tear as well. She makes it all worth it and would do it for the rest of my life. Again it amazes me how strong she is and as Dina says....she is an old soul.
Love to all.
Patrick and Holly
Sept 19, 2006
Today is Tuesday. We just found out yesterday that Payton can be discharged tomorrow and continue radiation as an outpatient for the next 3 weeks. We are so excited but scared at the same time. We will be staying at a different hotel that has a kitchen in the room. We need it due to Payton's increase appetite!!! We also have to learn how to cath her. I am not looking forward to that! Payton needs to get out of here. It is a great place, but she is going bonkers. All she sees is her room, radiation room, and the cafe. We try to take her for walks outside but she is not impressed. It is funny how our priorities change. Patrick and I were talking the other day about winning the lottery. The first thing out of his mouth was, "I would build a play area for the kids at Duke...then it was all about Payton's Foundation and our board of directors". We used to talk about taking trips, now its about what we can do to help others. Not that we weren't like that before, but this has really taken over our lives in a positive way. After we get home in 3 weeks, Payton will receive OT/PT several times a week. Our doctor wanted her to go into impatient rehab, but we feel that she would make better progress at home. Fortunately and Unfortunately, Payton has me as a mother. I will be putting my OT skills in overdrive to help her. I also know Ms. Sam will be on my ban wagon to get her stronger. If everything goes well we don't have to be back at Duke for 6-8 weeks. However, we have all seen that things always change. Patrick and I want to again thank everyone for visiting us and helping us while we have been here at Duke. We want to reach out to Gina's sister Angie. Thank you so very much for the plane tickets to fly Savanna and Sydney up here to see their sister. They will be coming up this Friday. It means a great deal to us to see our children and have them all together. Angie you have done so much for us and we are sorry we have not formally thanked you. We can never thank you enough for all that you have done for us. We are so blessed to have so many people in our corner. I was given a book of quotes from my mom. Here are two of my favorites. "I was taught that the way of progress is neither swift nor easy...Madame Curie" and "Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference...Virginia Satir". We are all working hard everyday to keep going and staying strong. Thanks to all in helping us fight for Payton. PT is here working with Payton and I am getting pulled every few seconds. My thoughts are everywhere, so I hope this update makes sense. I love you all and keep praying for the miracle. Her getting well is out of our hands and in Gods. Make it a good day...It's gonna be a good day!
Love you all
Holly and Patrick
Today is Sunday, I am not sure of the date, I think the 24th. Anyway, I am sorry for the delay of our updates. We have had a crazy few days since Payton's been discharged. We were discharged last Wednesday and are staying in a residential hotel. It has a two bedrooms and a kitchen (so we can keep up with Payton's food demands). All Payton talks or thinks about is food. When she is eating breakfast she is trying to figure out what she is going to eat for lunch and dinner (not only that day but the next day as well)! The girls were able to come up this weekend with my mom. Thank you so much to Gina's sister Angie for sending the girls Southwest gift cards to fly up here this weekend. We had a great time with our girls. Kristen York came up on Wednesday. Lucky her, she got to move us out of the hospital. She will tell you we had quite a bit (that's what 3 weeks in the hospital will do). Her parents Jamie and Fred have given us a car to borrow from their friends, which we can't thank them enough. Jamie has been helping me with Payton's sores on her bottom. Because of the radiation, Payton has a hard time healing. We are trying very hard to keep these wounds from getting any bigger. They look so painful on her bum. She has a small sore on her spine that we are trying to heal as well. It is so frustrating for me, because as most of you know I am a obsessive mom. I am rotating her, changing her, ranging her lower extremities all the time. I don't know what to think her sores would be if we didn't be so diligent with her. This weekend was fun for all of us. My dad, uncle bzer and our friend Jay came down as well to visit. We took Payton and the girls to a hands on science center which has a very cool butterfly exhibit. We also went to some good restaurants. Payton definitely enjoyed herself. However, through all the activities, the only thing she wanted Patrick to do was "daddy, please drop me off at the grocery store"! The grocery store is heaven to her. All she talked about was trying to go to Kroger's (which is a grocery store). As I stated earlier, it has been difficult to find time to do updates. Our schedule is hectic. Payton is needing to be cathed every 6 hours. We are trying to stay on schedule (6am-12pm-6pm-12am). We have to set our alarm to get up to cath her. Try doing that when you are exhausted! I just keep telling myself, this is short term. Payton is also on a major drug schedule. Which goes all day long. She only takes pills. Therefore, we have to cut them up for her. It has been difficult watching our daughter go through this. Her expressions are flat and she does not want to play. She enjoys books and movies. However, she needs to get up and play. She cries when we are doing "therapy" with her. And basically I am just trying to get her to play with her pet shop toys. I have been told that alot of her medications are making her this way, but it is still hard for us. I will say that when ever we say we are going to take her picture, a big smile comes out. We bring out the camera alot! No changes on her lower extremity status. She continues to feel (on occasion) us touching her toes and knee. She also can tell me what temperature I am using with a washcloth. The doctor said it will take time to get her legs back. She is going to need intense therapy when we get home. We are going to outpatient OT/PT here at Duke. Her day will continue to involve radiation, school, and therapy. She will be a tired little girl. We have heard there are several fundraisers coming up. We will update you on those as soon as we get more information. We apologize, but we have been out of the loop on things. I know you all understand. Our concentration right now is on Payton. We thank those who are wanting to help and are putting these events together. We appreciate you continuing our goal to get the awareness out. Again, I want to let you all know how much the guestbook entries mean to us. You have no idea how much we need a push to get us through the day. I also read a great quote in one of the latest entry "you cannot change the direction of the wind, but you can learn to adjust your sails". That is exactly what we are doing. Thanks for the quote. Also, please keep my other girls in your thoughts and prayers. They are both starting to have issues. I have them in therapy, but it has been so hard on them that mom and dad have been away. I will leave you with another Payton moment. It was late at night and she was laying on the couch. I was getting her pj's and Patrick was talking with her and asked he her what she was thinking. She said that "God was healing me, he had his hands on me and is giving me strength". When I came back into the room, Patrick said tell mommy what you told me. She said the same thing. I don't think I need to say anymore.
Have a great day...It's gonna be a good day!
All my love
Holly and Patrick
It is just after 5:00 PM and we just got back from the hospital after getting there at 8:00 AM. Payton had her typical radiation today, but her counts were a little off so they kept her for hydration. She is not eating or drinking enough and has lost weight. So Thursday we have to admit her again. She will get a feeding tube put down her nose to her stomach. We should only be in a day or so, but they may leave the tube in for a week or two to get her strength back. Just another step to recovery.
We heard today that if everything goes well her last day of radiation is Oct 11th. So we should be home that day! Not soon enough. Then we will wait for a couple weeks after that before she has another MRI to gage her progress on the radiation.
We are so looking forward to being at home with the Savanna and Sydney. Payton is as well. She misses them terribly. We are anxious to see all our friends as well.
Thanks to everyone for keeping the house going, especially Sybil.
Love to all.
Patrick and Holly
Thursday Sept, 28th, 2006
Today is Thursday afternoon. Some things have changed this week, as it always seems to do for us, and not in our favor. On Tuesday we spent the day at the “day hospital” in the oncology clinic. Payton needed fluids. She was constipated and her sores in her bum were not getting better. Due to radiation, patients don’t want to eat and sometimes drink. Because she is getting spinal radiation, her stomach and throat are bothering her. Patrick and I literally FORCE her to eat and drink. It is a battle every moment. In her eyes, mom and dad will not get parents of the year award! We were told that she would need an NG tube for feeding. Those of you who may not know what an NG tube is…it is a tube that goes up the nose and down into the stomach. I agree with the doctors she needs it because she is so skinny. You can see her ribs and hipbones. What we hope occurs is that she gets caught up with her weight and becomes “plump”. We were to be admitted today, but when we showed up on the oncology floor they told us they did not have any beds available. They HOPE to have one either tonight or MAYBE tomorrow. It makes us feel so sad to know that they are over booked with children with cancer. Today has just been a bad day. This morning, Payton was crying and begging us to take her home so she can play with her sisters and go swimming. It broke our hearts to hear her talk and we spent our morning with tears in our eyes. We got through that episode right into another. As soon as we got into the car to go to radiation, Payton was crying again stating she had a headache and her back was “killing her”. Patrick and I again were in hysterics. Those words are words we NEVER want to EVER here! We met the doctor at the hospital to be relieved that (it there is such a thing as being relieved) she rubbed a sore on her back with her car seat. Her session in radiation took longer than usual due to extra x-rays they needed. The radiation oncologist ordered 7 more treatments on her spine. We were supposed to be done yesterday with spinal radiation. If it weren’t for INXS music…that is the only thing we feel that is getting her through these treatments. I don’t know if I explained what her radiation treatments are like. It is hard for me to tell all of you about what we go through everyday. It is the most difficult and stressful times. I will try my best to describe to you what it is like for her just for the radiation part. We have had several people visit and they all say the same thing. You have no idea what we are going through unless you see and live this for yourself. When we go to radiation it is around 9:00 am. We wheel her in a darkened room that has a narrow see through table that Payton is to lie on. We immediately put on INXS (her favorite song is Hot Girls…don’t ask). We undress Payton except for her diaper. We lay her on the hard table and her head goes into a mold for support. It takes some time to position her correctly. Did I mention it is COLD in that room and she has ZERO fat on her, therefore she shakes. We tell her to close her eyes so that she does not see the mask go on her face. The mask is made out of mesh plaster. It is sealed tightly to her face…she has mesh marks all around her face and head because it is to fit TIGHTLY. Imagine! The mask is then bolted down to make sure she does not move. She is in this radiation room for about an hour. When she is done, we tell her she can open her eyes once the mask is completely off her face. I felt it was important to have her keep her eyes closed the entire time to decrease anxiety. So far it has worked. We then get her dressed, stop the INXS music and leave. Now, Payton is extremely tired. So when I say her music helps….it HELPS. I wish I could let INXS know what and how much their music has meant to our daughter. I know she is 4 but this music keeps her going. The staff has said that they usually have to sedate children and are amazed at how smoothly Payton completes her treatments. Patrick and I would like to video her getting her treatment. By no means to exploit her but to show what these children have to endure. I am hoping tomorrow we can get started on her NG tube. She really needs to pack on the pounds. We hope to be in and out of the hospital, but we are realistic and are planning for an extended stay. On some other news Patrick and I were informed yesterday of a new addition to our family… A DOG!!!!!! Thanks to Mimi!!!!!! My mother got a dog for the girls. At first I was not too thrilled and needed to calm Patrick down. But again, the girls were so happy and they really wanted a dog. The girls named him (I think it’s a boy…I don’t really know) Buddy. Payton saw him on the web cam and thought he/she was cute. Savanna and Sydney really needed a mental boost. They are having a very hard time with Patrick and me being away for so long. I miss my girls so much. Payton last night was saying over and over again that she couldn’t wait to be a “family” again. She nailed it…we can’t wait to be all together and a family. This disease and the past 6 weeks are starting to affect us. We are still positive and supportive, but it is testing us. We are so tiered. Physically and emotionally. We talk all the time about what we are going to do when this is all over…things like painting, gardening, going to the beach on Friday nights with the kids. Please don’t take those little things for granted. We would do anything to have a moment of calm. Well I think I have started to write a book. Sorry it is so long. I do want to thank Bill Lee with Professional Automotive Services who fixed our SUV for us and Vi for setting it up. Also, in the guestbook entry, a cut-a-thon fundraiser is coming up. Please look for it in the guestbook. Patrick and I cannot thank everyone enough for all of his or her help in assisting us to get through this. We hope you have a good day…It’s gonna be a good day” (somewhere).
Love to all
Holly and Patrick
Today is Friday the 29th. Patrick and I can’t believe that we spent the whole month of September here and at from what we are hearing today, probably most of October. This has been a rough week for all of us. We feel that she takes two steps forward and 20 back. Today Payton needed platelets, fluids, and nutrition. They decided against the NG tube for now because her platelets were so low (I mean seriously low). Also because of her throat and esophagus pain, they felt it would do considerable damage to place in the NG tube. She is on TPN IV feeding. She won’t be on that too long, because TPN causes injury to the liver. Payton is starting to show signs of radiation burns. Her back looks like she had hot liquid poured on her and her skin is coming off. I felt horrible today. I put ointment on her back last night to help with healing. I secured the cream with band-aids. When we got to radiation this morning I went to take off the bandages because you are not to have any ointment on the skin. When we took off the band-aids we also took off her skin. I began to cry. However, they told me that her skin is burnt and will come off like that now. Even if she rolls in bed. It still didn’t make me feel better. When I look at the sores and the pain she is in, it is killing me. We have her on painkillers now for her skin and throat (morphine). It has helped. Doctor G said that we should not make arrangements to come home yet. He said he wants to keep her for the next week and a half. After that he will see how she is with her feeding, bladder, bowel, etc. Then he will let us know if we can come back to Florida. If we are not allowed to come home after the radiation is all over, I will try to come back for a few days so I can take the girls to the Hanna Montana/Cheetah Girls concert. I also have their teacher conference that I would like to attend. From what we are seeing on the web cam and hearing from the girls, Buddy the dog is doing great. I was told Buddy is a boy. Buddy was given swimming lesions this week at my mom’s house. She was cleaning out her pool and Buddy just walked right into the water. Needless to say my mother had to jump in with all her clothes on and rescue the dog. I don’t think that would have gone over well with the girls if she drowned the dog the second day they had him. We will try to update you all on Mon or Tues. Patrick is going to Pittsburgh this weekend for a golf outing for Payton Foundation. I am computer challenged so I will wait until he gets back to put on an update. Please pray it is a calm weekend. I am not liking the fact that Patrick will be gone. He is my true backbone. I feel like I am a dam that has sprung holes. I seem to be falling apart little by little each day. However, I only show and talk to Payton in the most positive way. I do feel that she is being healed, It is just hard watching her go through all of this pain. Please…Please keep praying for her to have strength. Please believe in the healing miracle of god. Patrick and I hope you all have a wonderful weekend…”It’s gonna be a good day” – no matter what.
Love to all
Holly and Patrick
Oct 2, 2006
I just got back from Pittsburgh today and was glad to see that Payton was feeling a bit better and eating more. She had a great weekend with Mamma Vi and Ms Lori. They helped out Holly a lot and got to spend some girl time together. I think it was tough for Vi and Lori to see Payton go through radiation, but until you do you just can’t believe how strong she is.
I was in Pittsburgh for a golf outing that my very good friend Jack put together for Payton with help from my brother-in-law Brian as well. I want to thank Jack for all his support, time and love he put into one of the best golf outings I have ever been to. He and his wife and two daughters worked very hard to organize the event. Jack is our old neighbor when we lived in Pittsburgh. He and his family are the best friends anyone could ever have and they mean so much to our family. We truly love them like family. My brother-in-law also did a lot and I love that guy as well and can’t thank him enough. I also want to thank the other volunteers as. Great job!
I wanted to say again to everyone in Pittsburgh and the people who came from far away as well that I thank them so much for coming out to support Payton. It was great to see friends that I haven’t seen in awhile and meet a lot of new people as well. I was as usual emotional and tried to say a few words, but after Jack spoke a very heartfelt speech, I struggled to get anything out. I was again just amazed at the graciousness and good in people. Payton has made me a better man and I think she has touched so many others in the same way. I can’t thank you all enough.
It is good to be back with Payton and we are working hard to get her better. We will be back soon with more updates.
Girls if Mimi reads this to you know that daddy and mommy love you both very much and we will be home soon.
Love to all,
Patrick and Holly
Today is Thursday. This week has gone OK. Monday started out not so well due to a few incidents (I am not going to go into details, but it was not good)! I will explain at a later time. Anyway, Payton is eating more and more each day. She still is on her TPN (IV food) but they are cutting it back – that’s a good thing. The plan as of today (which we know changes from minute to minute) is that they cut back on her TPN to where she only needs it for 12 hours (typically it will run over night when she is sleeping). That way we are giving her the nutrients she needs to heal from radiation and the calories to get plump. They are slowly changing her IV medications to pill forms so that again we can get her off of all these wires! Her white count is pretty low so our radiation schedule is on a day to day wait and see mode. As this point, they are only radiating the back of her brain and pelvis. The pelvis is one of the main areas that produce bone marrow. Because they are zoning in on her pelvis, her white count will have a hard time recovering which means we may have to take some days off to recover. Payton has radiation tomorrow then the weekend off. We then only have 3 more treatments and we are done! Yeh!!!!!!!! I pray that we can get through the next few days without delay. Our hope is that we get done Wednesday and go home to Florida on Friday. Again, I must tell all of you how brave our daughter is through all of this. Her back is slowly healing, she is pooping, eating a bunch, and trying to drink more. She will have a mouth full of food and tell us to go get the doctors to show them she is eating so she can go home. My heart is hurting for her. She cries daily to us about wanting us to take her home. She misses her bed and sisters. I know I am going crazy, I can’t imagine how she feels. I can’t wait to get out of here, but I am scared to death. I don’t want to be too far from Duke and Dr. G. He is such an awesome doctor. We also LOVE our radiation techs. Payton and Mr. Eric really enjoy listening to INXS during her radiation treatment. She can’t wait to give him an INXS CD. Payton has changed the name of her hospital puppy Buck to INXS. This group has really helped her get through these difficult procedures. I also want to thank my brother and dad. They booked me for a spa treatment that was called the “Stress reliever deluxe package” and facial. I did not want to go because I feel so guilty if I leave Payton’s side. But I must say it was so needed and worth it. I was able to regroup and mentally get back on track. It was so awesome that I booked Patrick to go today. We both need to stay focused and mentally sharp for Payton. So thank you Brian and Dad!!! Payton is now sleeping and all is calm for a short while. I know our prayers are working. She is eating and healing—we are blessed. I know God has his hands on her and will make her well. Please believe it and continue to pray for her. It is working. I love you all so much for being there for us. You have no idea how much you all have meant to us. You all have a great day – It’s gonna be a good day!
Sunday, October 08, 2006
Today is Sunday. We are still hopeful that we will be able to go home at the end of the week. However, early Saturday morning Payton came down with a fever. There was talk about stopping radiation for a few days in order for her to try to recover. Prayers were answered and her fever was only that one time and she has been doing better ever since. Payton’s TPN (IV food) has been cut to 12 hours and she is EATING very well. Her favorite breakfast appears to be pickles, ice cream, spaghetti, cinnamon roll with icing, chocolate protein shake, and eggs. She also asks for salad, fries, chicken, and grilled cheese sandwich for breakfast (however, I am unable to find those items at 6AM). I made a large container of spaghetti so we have that at all times. She eats spaghetti at almost every meal. Her weight continues to incline at a nice pace. We are so proud of her. She wants to go home and is doing what she is told to get out of here. We still need to cath her every 8 hours, however, she is having several heavy wet diapers (that is a good thing). At times she asks to be cathed because she feels her bladder full. Again that is a good sign. I hope we start having our up swing of good news. I think she deserves some. Payton’s skin is slowing healing. The improved nutrition has helped a great deal. I feel so bad for her because she is SO ICHY! We have to have gloves/mittens on her at all times. She rubs her face/head all the time. When we take the gloves off for her to eat, we must watch her at all times because she will scratch herself until she bleeds. We can’t afford her to lose any more blood. Payton is starting to get her personality back. She is talking and interacting more. I received pictures of Payton from my friend when she was at a birthday party. I loved looking at my little girl having fun. I tried to remember her as a playful child. I began to cry because it seemed so long ago. I had a hard time remembering Payton with her long blonde hair, chubby belly, and her high energy. I really miss my Payton. I miss my girls and I miss my life back in Florida. Patrick and I are so tired of feeling stressed and worried. I look forward to the day that we tuck all THREE of our children into bed and lay in our bed without stress. A night of all is well in the Wright household. That thought never leaves my mind. I know that day is on its way. We are staying strong, positive and in deep prayers. We are so blessed for having so many people behind us. We have great doctors here and some awesome nurses that really care about our Payton. It has helped us with this long stay. We are so happy for all of our friends who have come to be with us over the weekends. The weekends are long because there aren’t any treatments or therapies. When we get visitors it helps us mentally escape from our hospital situations. I also want to extend a huge thank you to the teachers at McNeal who are looking out for Savanna and Sydney. I should say the McNeal staff. Ms. Gigi (the school nurse) has spent several lunches sharing a soda with Sydney. When I look on our guestbook entries, some of the teachers are writing in praying for us and stating how they watch out for our girls. I don’t know how to tell you how much that means to me. I am in the thick of this with Payton, but I worry just as much for Savanna and Sydney. They are also the bravest little girls and have been doing well in school and at home. I love you girls. Daddy and I will be home soon. We will have our family dinners again. Thank you to all. Patrick and I could not be where we are mentally without you. Have a wonderful day…It’s gonna be a good day.
Love to all
Holly and Patrick
Tuesday October 10, 2006
Today is Tuesday. We are still on track with Payton’s radiation schedule. One more left!!! Her back is burnt very badly. It will take a while for her to heal. We were given the green light to come back to Florida. Dr. G stated he was looking out for her mental/emotional status. He knows how much she needs her sisters and how sad she has been. Therefore, he is allowing us to go back to Florida to All Children’s Hospital. Then we can go home. Payton will be on a Med Flight to All Children’s Thursday morning. Our hope is that Payton will be examined and observed for a day or two and then get to go home. We will need a home health nurse to come everyday for her TPN. Dr. G felt he wants her to gain EXTRA pounds. Once she has put on some weight, the TPN can come off. Payton will need major therapy. She is unable to sit up with out assistance and is very weak. I know Ms. Sam, Sue and Margaret will whip her into shape. We will definitely miss Payton’s PT/OT. They worked well with Payton (even when she would yell or be resistive –not uncooperative but resistive). Today in therapy they played INXS during treatment. Ms. Jenny had Payton on a therapy ball. Payton was playing instruments and didn’t mind the bouncing movement. Again, a big thank you to INXS. If they only knew what their music is doing for our little one. We gave Mr. Eric an INXS CD so he can remember Payton. She couldn’t wait to give him the CD. I think we got a lot of people hooked on their music. We will miss so many people here at Duke. We had some awesome nurses/aids, the radiation team was great, the transporters (especially Charles) were great, the doctors were wonderful…for such a horrible situation we are in, we felt we had a great support staff behind us. Everyone took such great care/attention to our daughter. One of a thousand examples is…at 4pm today the nurses/doctors/child life team are having a party for Payton in celebration of her last treatment and ability to go home. We all know what music will be played and there will be FOOD. Payton originally stated no boys but daddy was allowed to come. However, she said if the boys brought food they can come as well. Nurse Heather said the doctors were going to Hardees for the French fries. I am praying as always that this worked. Please keep the prayers coming. I also wanted to thank Shaggy’s Hair Salon for the fundraiser they put on for Payton. We heard it was a great success.
Payton’s doctor’s and nurses just stopped by for a going away party for her. It was great! They all danced to INXS and had a blast. I got some of it on video so when I get home we can get the video on her site for you all to see.
Thanks for everyone again for all your help and looking forward to getting home.
Love to all,
Patrick and Holly
Saturday October, 15, 2006
Today is Sunday. I am sorry for the delay in the update. I wrote 4
new updates, but because I am computer challenged…I lost them all.
Anyway, Patrick and Payton flew to All Children’s Hospital on
Thursday afternoon. It was a long flight due to the Florida storms.
Payton’s back is healing slowly, but looks so much better than earlier
last week. She continues to eat around the clock, but we noticed she
is starting to finally crave healthier foods (bananas, grapes, salad,
etc). Dr. B from All Children’s took her off TPN. Dr. B felt the
same as Dr. G from Duke…Payton needs to go home to her family.
Therefore, they let us go home Saturday. They will closely monitor
her food/drink intake and her healing process. She will be off
steroids as of tomorrow…yeh!!! Her face is very swollen due to the
steroids. Slowly, she is getting her personality back. Last night
she actually played like a 4 year old. It wasn’t for long, but at
least we saw our little Payton come
to life. When Patrick brought her home, Payton cried when she saw
Buddy. She loves her new puppy. The girls can’t do enough to help us
and Payton. We are truly blessed to have these girls, each are
amazing. I flew home Wednesday to take the girls to the Hanna
Montana/Cheetah Girls concert. My mom and I had the best time just
watching the girls. It was their first “concert”. Ms. Sam and the
girls made my mom and me cheetah concert clothes to wear. There was a
group of us going to the concert. We all had so much fun. Savanna
said “this is the best thing that has happened all year”. The girls
really missed us. 6 weeks is a long time to be away from home. I
went to the girls teacher/parent conference on Thursday. The girls
are doing great in academics and in the social department (they get
the social piece from their father)! My mother got a great review as
well. Through all of this, my children are so well adjusted. I owe
that to my mom. She has been so wond
erful. My mom needs a huge thank you from us. She took a leave from
work and moved down here to take care of the girls. She not only
left her job, but her friends and most important my dad. Thank you
mom from the bottom of our hearts. All our children mean so much to
us. We are so grateful that the older girls are doing as well as they
are. Back to Payton, we don’t need to go back to Duke for 6 weeks.
God willing we will not be back before than. Therefore, for the next
6-8 weeks she will only be going to therapies. The next 6 weeks is for
her to heal (mentally and physically). Please keep the prayers
coming. This disease is out of our hands…God is the only one that
will heal her now! Right now Payton, Savanna and Patrick are watching
Rock Star Supernova (we TEVO). Payton is rocking out right now, its
very funny. She remembers watching JD from INXS on this show. When
she watches these shows, she thinks the singers are singing to her.
She blushes and turns he
r head. The singers are not her JD!!! I joke with her about him and
she says she is the only one that is allowed to smooch him. Right
now her white counts are very low. We would love to have visitors,
but we need to get her a little stronger. Within the week her counts
hopefully will get higher. We can’t wait to see everyone. You all
have been so supportive and keeping us on track. It has been a long
and hard 6 weeks. Watching our daughter go through the radiation
treatments and the burns from them is so hard for us. It has been
difficult to remember my little baby before this all happened. I want
so much to have my daughter back in full swing again. She has so much
to give to all of us. We watched video of Payton through out this
process. The decline is killing me. BUT...we are not giving up. She
has so much faith…I am learning from her. Payton will make it
through. Positive attitude with strong faith is what we keep going in
our home. Please keep those p
rayers coming. Have a good day….It’s gonna be a good day. She is
All our love
Patrick and Holly
Monday Oct 16th.
Hi all. Hope everyone is doing well. Holly put an update on yesterday, so please scroll up to see it as well.
Payton is doing pretty good this morning after a little scare last night. She got a headache last night at 3:00 AM. Holly and I were very concerned, because those are one of the last things you want to see your child have with brain tumors. We think it was from the pain in her back from the burns she has. She handles pain so well and rarely complains about her pain. We are monitoring her and gave her some pain meds to see what happens. So far this morning she has said that she doesn’t have a headache. And,,,when we questioned her further she said her back was hurting yesterday and last night. I will tell you this, if my back looked like hers I would be on about 10 gallons of morphine a day! We talked to her about letting us know if something hurts. The last thing we want is for Payton to be in pain. We are really hoping the headache was from her back. She has an appointment to see the doctors tomorrow for blood work and a check-up. We should know more then, but if the headache comes back we will be going back to All Children’s right away.
I was speaking with a friend of ours George and he mentioned Payton’s website and was amazed at the amount of hit’s her site gets. You can see the counter just below her picture on the main page. Today it is over 12,000 hits. He thought that was a lot and I said yeah it was for 5 weeks! George thought the counter was up the entire time the site was. I let him know that Nikki our administrator just put the counter system up 5 weeks ago. So who knows how many hits the site has had since May. We both thought how great that was that everyone one of those hits is a prayer for Payton!
Keep them coming.
Thank you all.
Patrick and Holly
3rd update today. Oct 16
9:30 PM Monday night.
Well this is the third update today. Holly will probably have something written tonight as well. We had to take Payton back to All Children’s Hospital this evening. She came down with a fever and with her counts are so low we had no choice. It is at least a 3 day stay at the hospital. She just needs a break! I just feel so bad for Payton. She is such a fighter, but this disease is as well. She just won’t quit though and neither are we. She was in pain last night, but didn’t say a word. Her back is so raw from the radiation it looks like she was in a 4 alarm fire. I just can’t believe how she handles pain. I am with Sydney and Savanna tonight and Holly has Payton at the hospital. They were both disappointed that we had to be separated again.
Holly may mention this later, but INXS has called a few times and today their manager hooked up with Holly. I guess the guys in the band plan on speaking with Payton and maybe getting together with her in November. I believe they are on tour in Florida then. I think Payton will be so happy to meet the people that got her through radiation every day for 6 weeks. We just can’t thank them enough for their kindness. I hope it makes them feel good that their music helped a child deal with something that no child should every have to deal with. Well my eyes are about as tired as can be. Probably not making much sense, so I am going to end it here.
Love to all,
Patrick and Holly
Hello Everyone, 4th update today
Today is Monday. It is around 11:30pm. We are in jail again
(hospital)! Payton came down with a fever around 3:00 today. She
woke up around 3:30am this morning with a headache. Our hearts
sank. We kept asking her “are you sure”…so we were getting ready to
take her to the hospital early this morning. However, she fell asleep
and woke up an hour later saying she felt fine. My theory is she was
so excited to be home that she didn’t want to lie down for a moment.
She sat up the entire day. Payton used muscles she didn’t know she
had…therefore headache. Also, she later told us she had pain in her
back (skin pain) from the radiation burns. I feel that could have
also contributed to her headache. I pray I am right in my analysis.
So here I am again in a cold hospital room sitting in a chair hoping
and praying we get to go home in 3 days. I miss my bed, I miss my
other girls, and I miss my Patrick!!!! Patrick and I felt horrible
having to take her back to the
hospital. We kept taking her temperature every 5 minutes, hoping she
was just too warm from the blankets. However, we were wrong. The
fever never gave in and we have to call when she gets a fever of 101.0
or higher. We are not gambling with our daughter. We just suck it
up and do what we do. Fight to get her better. Besides her fever,
Payton is doing ok. Her wounds are slowly healing, she is
eating/drinking very well, and she is starting to participate in other
activities. This is really taking a toll on our family. Patrick and
I are really needing to dig deep to keep ourselves going. It is
impossible to tell you exactly what we go through each day. The
stress we have is never ending and always present. We can never
escape this nightmare. Situations that occur like last night is
shear panic. We can’t wait to feel the sense of calmness, joy,
laughter…right now it seems we will never get to that point. Please
keep us in your prayers, we so need them ri
ght now. The girls are very upset as well. This morning I told them
that we would have to most likely go back to the hospital. Savanna
broke down in tears and Sydney just went into her room and ignored my
statement. They both stated they didn’t want us to leave again. They
were afraid it would be another 6 weeks again. My only reassurance
was that we are going to All Children’s and wont be that far anymore.
Oh, we did have a major bright spot in our day. The manager of INXS
called us. She, as well as, the band sent their support for Payton.
I was so touched by the phone call I had to try not to cry while
talking to her about Payton’s radiation treatments. I was so glad to
know that INXS knew how much their music has meant to Payton…it helped
her through the most difficult time in her life. Their manager was
so wonderful to talk to…she sounded like an amazing women. Well, it
is almost 1:00 AM (I had to take breaks from writing to help Payton).
I will try to up
date soon to let you know how she is doing. Thank you for checking up
on her and caring so much about our little girl. Please, say some
prayers for us. My baby needs them more than ever. I truly hope you
all have a wonderful day. Remember…It’s gonna be a good day!
All our love
Patrick and Holly
Weds Oct 18th
Today is Wednesday. Where do I begin…Payton has a staph infection in
her back due to open wounds and a UTI infection due to the cath. They
are still trying to determine the severity of the staph infection. At
first we were told that it could be MRSA (antibiotic resistant
infection) which we would have to stay in the hospital for 2 weeks.
However, I am all about what is best for Payton. She also needs her
mental health looked after as well. They ended up saying that “most
likely” we can go home tomorrow with antibiotic treatments. I ask
again, “Can this child ever get a break”!!!! Payton is still eating
VERY WELL and drinking up a storm. Because of the radiation, Payton
displays increase in fatigue and is sleepy. The swelling in her face
has decreased quite a bit. Last night they had to access her second
port. Both ports need to be accessed at least once a month. The IV
team had to come in because it was not working. (No surprise)!!
However, I am glad to say both ports are working just fine at this moment!
Unfortunately my child has to keep getting poked at, but we are in a mission
of getting her well.
Ms. Sam came to visit today. She was joking around with
Payton and told her she was going to break her out of here and take
her home. Within a few minutes, Payton stated “GO GET YOUR CAR and
TAKE ME HOME”. When Payton realized Ms. Sam was not going to take
her out of here she got mad and wouldn’t talk to anyone. She got over
it when I bought her an ICEE. We had other visitors that came to
check on Payton today. I am as always overwhelmed by everyone’s
kindness and generosity. To take time out of your busy day to visit
or pull up Payton’s website and check in on her…it means so much to
us. I was telling a mom I met (Ms. Maria) that the guestbook entries
mean so much to us. We are really feeling the stress right now. When
we get such encouraging words from all of you, it gives us the extra
breath to keep going. Ms.
Maria came with bags of toys for Payton to pass the time. Thank you
so much for thinking of her. I can not wait until Payton is well
again, I will continue what all of you have done for us…go that extra
mile to be supportive and extend a hand to those you are know and
those you have never met. I also wanted to say to all the Doctors and
nurses that have taken care of Payton the last 6 months both here and
at Duke. We love you all. Thank you for trying your best in helping
her to feel better. We have a very sick little girl and you all have
treated her with such kindness. My hat goes off to you all. You
deal with such sick little children day in and day out. I think I
can speak for all parents…thank you for taking good care of our
precious little children. I have to go…Payton is HUNGRY again. I
hope I can write to you tomorrow with the good news as we are at
home. Please know we are grateful to all of you. We are so wrapped
up in taking care of our children,
it is hard for us to get out those needed thank yous. From the bottom
of our hearts we appreciate all you do for us. Please keep those
prayers coming in for our little girl. There will be a day when I
write in my update two magical words…miracle and cancer free. You
should all then know you had a part in her healing…power of prayer
will work. Please have a wonderful day…It’s gonna be a good day
(especially if we are at home).
Love from our hearts
Patrick and Holly
I put a new video on Payton’s site today. It may take awhile to download it is a pretty big file. It shows Payton getting ready for her radiation putting on her mask and listening to INXS. Eric, Rick and Michelle are the Radiation Technicians taking good care of Payton. Hope it downloads.
Payton is home today and doing pretty good so far. Her back is still very raw and sore, but she is hanging in there. We are hoping to have a good weekend with all three of the girls at home.
I might try to bring her to Monty’s Pizza shop tomorrow (Sat) for a bit. They are doing a fundraiser for Payton. I am also going to try to make it to the race going on in Sarasota this Sunday as well. Thanks to you all for supporting her. We truly appreciate it.
Thanks and love to all,
Patrick and Holly
October 23, 2006
Today is Monday. We were able to bring Payton home last Thursday from
the hospital!! Yeh!!!! Every day her back is looking better and
better. She is slowing up on her eating to a normal 4 year old pace.
At first I was worried, but then realized she is eating like a regular
little girl. We had our doctor visit at All Children’s today. Payton
needed platelets and some fluids. She was only given a small about of
platelets due to Blood Bank not having enough supply. Patrick and I
will be contacting our church (Harvest) to see if we can do a
blood/platelet drive. Donating platelets takes a little longer to
retrieve. If anyone has the time and is willing, please donate
platelets. I would be so grateful. It was an uneasy feeling knowing
my child could not get the amount of platelets that she required. I
know we are not the only ones in need. I am going to try to go this
week and donate. I need to go back to All Children’s tomorrow and
spend another full day in the
clinic for Payton to receive the rest of her platelets and blood
transfusion. Her counts are higher (thank goodness). As many of
you know (especially the staff at Duke)…Payton loves to eat. She
asked if we could go to Carabas for dinner. We thought it wouldn’t
hurt if we went early to miss the crowd. She had her spaghetti and
meatballs with lots of bread. We then took the girls to look at
Halloween decorations at the party store. The girls chose a huge
monster to put at the front of our door. Hope you all like it! At
this point Payton is very tired. However, she doesn’t want to lie
down and go to sleep (the wild Payton is still intact). I just read
all of the guestbook entries…thank you so much for being our
cheerleaders. We need the pat on the back and encouraging words.
Lately, I have been so tearful and used my closet more. I just feel
so badly for my daughter. We watched videos of her from the beginning
of this horrific ordeal to now. My heart is broken…
She has endured so much. Patrick and I have no choice but to smile,
be positive, and pull ourselves together. Because even as it kills us
to see our precious daughter go through all of her “treatments”, she
is the only one experiencing them fully. It would be so selfish of us
to not stand up and fight with all our power to help and support her.
Dad is on board now. Payton just vomited a little bit and we had to
clean it up and get her ready for bed. It is 10:00 PM and she is with
Holly now on the rocking chair going to sleep. She used to love that
rocking chair and Holly would rock her most nights. She hasn’t been
able to do so for some time now.
I haven’t been in touch with some of our friends the last few days and
sorry for that. We just were running around this weekend trying to
get the house together and I was at Monty’s Pizza on Sat for a few
hours. They had a fundraiser for Payton and it turned out great!
They were just all the nicest people. I wanted to thank them
personally for everything they did and please know we appreciate it so
much. P.S. Thanks for the Balsamic Glaze as well!! Great stuff.
It’s mom again, Payton is cleaned up and sleeping in our bed (as
usual) we wouldn’t have it any other way. I need to go lay down
with her, but before I go thank you all for helping us get through
this. Oh, how we need you all right now. Please make tomorrow a
great day… you only get one tomorrow…It’s gonna be a good day! We are
all together and that is all that matters.
Well that’s about it for now. Have a great night.
Love to all,
Patrick and Holly
Addition to the above update.
I just spoke to Florida Blood Services and they advised us to have people in the area interested in donating platelets to go to Lakewood Ranch Hospital or the main office on Manatee Ave across from the hospital in Bradenton. I received calls today regarding people who want to donate.
Lakewood Ranch office 907-0806
Main Office 746-7195 x 109
You don’t need to do a direct donation to Payton. Just say you want to donate in honor of Payton Wright. The Florida Blood Services supplies All Children’s Hospital where she receives platelets.
Thanks to everyone who donates.
Wednesday, October 25, 2006
Hello everyone. Payton is home today with no hospital visits!!!!
I just wanted to let everyone know that I added several pictures to Payton’s site this morning. You can sort by hitting the “last modified tab” and look at the ones from today Oct 25th. There are a few from the party that the Duke nurses and Docs had for Payton. There are some with her sisters, Mimi and Papa and a few of her just hanging out or sleeping. There is also one of her on the radiation table with her dreaded mask on. She is so glad to not have to wear that thing again.
Enjoy and have a great day.
October 26, 2006
Today is Thursday. This will be a very quick update, because our life
is extremely hectic now that we are home with Payton and two ACTIVE
girls. We had to go up to All Children’s today for more platelets.
Thank you to all who have signed up to give platelets. Payton will
need them every two days. We are off for the weekend and will go back
on Monday for blood work and platelets. Today was a “good day”.
Payton colored a picture today. It was the first picture that she
finished and stayed in the lines! Also, she wrote her name like she
did before this all happened. I cried! She also waited for the girls
to come home and actually wanted to play. They played with their felt
board friends. Yesterday, Payton finished a 25 piece puzzle all by
her “own self”. As you all know, Patrick and I love these small
miracles…they may be small but large to us. This truly was a great
day. I wanted to thank Lynn Strype for making Payton an awesome
silver “I love INXS” bracelet
. Thank you Lynn! She wears it all the time. Lynn has made some
incredible bracelets for us. She made me an “It’s gonna be a good
day” bracelet-I will always cherish. Also, we have a neighbor that
has not left their name but has dropped things off for the girls. We
appreciate them and thank you! I think the girls can make Payton a
great hat! Back to Payton…her back continues to heal and looks
better and better. I thank god everyday for his small and needed
miracles of healing. Payton’s motivation (besides INXS) is
Halloween. She is going to be Tinker Bell. The girls are going to be
pirates. She asks everyday to go trick or treating. If you see us
walking around before Halloween all dressed up, just chalk it up to
she wore us down. Halloween can not come soon enough around here.
Well, Payton is hungry again. Please keep the prayers coming. Today
was a nice day, but I really want to have everyday a nice day.
Please have a good day and keep our little baby
in your prayers.
Love you all…”It’s gonna be a good day”
Patrick and Holly
Monday October, 30 2006
Today is Monday, October 30, 2006. We have had some great few days
with our family! We were at All Children’s today for more platelets.
Thank you to all who have signed up to donate platelets in Payton’s honor.
Your platelets do not have to go directly to Payton. Just ask them to have them donated in her honor. That way we build up her “account”. I hope to be able to replenish what she has used. We are slowly taking her down on her pain patch. She continues to do well with her eating/drinking. Everyday her back looks better.
Tonight she asked us if she could take a bath. Oh, how I couldn’t wait to put her in the tub. Sydney had to hold her. Both girls have been amazing. However, Savanna is fearful that she is going to hurt Payton. Sydney, on the other hand, jumps in with both feet and doesn’t look back. Sydney has been the only one who will get in the tub and hold Payton. Sydney can’t do enough for Payton. Our weekend was awesome. We ALL went to the Boo fest, soccer games, fall festival,
a ride in the invisible car (Mark’s convertible…Payton calls his car the invisible car),
and church this weekend. It was so nice to be a family again. Don’t ever
take family times for granted! It was a cherished weekend for us.
We had some difficult moments though. Payton has been looking forward
to Halloween. So on Friday we get her dressed in her tinker bell costume. At that moment she said “OK I am ready to stand up and walk”. I tried to explain that she couldn’t, but she didn’t understand. She cried and I think it was starting to sink in that she could not walk. We asked her all the time at Duke about her not being
able to move her legs/walk. We feel that she probably felt so sick she didn’t care to move. Now that she is starting to feel better, she doesn’t get why her legs aren’t working. It broke our hearts. Some good moments…she colored an entire picture…in the lines and wrote her name. She also drew Mr. Mark a birthday card. It was a picture of her holding his hand.
We are loving these small miracles. Payton is starting to smile, talk and
joke around more. It is hard to believe that just two months ago, we were given hours for her to live and now she is being, for the most part, a typical 4 year old child. Patrick and I want you all to know that you had a part in saving her life. The money that was donated, help pay for things like the Medical Flight to Duke, ambulance transportation, hospital/medical bills, and medications etc.. When we were talking about our community today, I needed to thank you all again. It doesn’t matter if $5, $10, $100 or thousands were donated. Every penny helped us keep our Payton here with us to this very moment. The other part is your prayers. She would not be here without you all praying for her. You all should feel so proud of yourselves for helping a family…a little girl. As I have said before, I used to be very good at thank you notes. You all deserve a personal note of thanks from us. I am sorry that I have not been able to complete my handwritten notes. I hope to someday be able to personally thank you all. Payton has been going back and forth on her music choices lately. We of course listen to INXS daily, but it is now mixed with “Good Day” by Jewel. On her own has asked us to play her “good day” song then it goes to “hot girls” song then back to “good day”.
What can I say she is obsessive! She has had some really “GOOD” days. It was so nice to see so many of you this weekend at all the events. As I always say we are so blessed to have so many people care and pray for our precious daughter. Please know that your prayers are meaningful and are heard. She is healing. We are able to have a small break right now. I hope with the continued prayers we will have an infinite break! Thank you from the bottom of our hearts. Please, please continue your prayers for Payton and my girls. They need them so much. I hope you all have a wonderful day. I mean that! Remember, “it’s gonna be a good day”!
Patrick and Holly
November 3, 2006
Today is Friday. This has been a very hectic week for all of us.
Payton has been feeling OK. On Tuesday, Payton went to her sisters costume parade at their school. She does not like being around a lot of people, so she was not very happy that morning. After the parade she made homemade pumpkin muffins. When she grows up I am pretty sure she will be a baker! All she wants to do is bake and cook! It’s fun to be in the kitchen with her. Anyway, after we baked that morning we went to PT with Ms. Margaret. She cried the entire time. Payton is very fearful of moving. It is so sad to watch her not be able to be in some control of body. All day long we had to make a list of things that needed to be done before going trick or treating. We finally made it to Halloween night! We get to mama Vi’s house for our annual pizza on the driveway before trick or treating. Payton complained of a headache and again cried. She did not want to go out for Halloween. My heart is now in my stomach because I don’t know why she is having headaches. As I stated before, headaches are not good. Well my mom took her inside and was able to do relaxation techniques with her. We finally calmed her down and she asked to go out trick or treating. She had a great time. We couldn’t go far…she became very tired. We definitely did too much that day. She was with her friend Jordan and it was so nice to see the two of them going out like they did last year. At one point Payton did not want Jordan to walk with her…when I asked her why, she said she was afraid Jordan would get all the candy because she gets to the doors first. Typical Payton statement (looking out for her food). Wednesday was a day of sleep for Payton. Again she had another headache, but I think this was do to lack of sleep. She slept for a good 4 hours that day. She baked with my mom and hung out
coloring and playing with her sisters. We found out that she has another UTI and the antibiotic she was one was resistant to her infection. We have her on a new one and hopefully this will work. I was told to reuse the tubing, but I am convinced that they don’t get cleaned enough. Therefore, I am no longer washing the cath tubing and reusing them. I ordered 300 tubing from a medical supply company. I hope they come in quickly. Thursday, we went to All Children’s for her blood work. Her counts looked great! No platelets were needed…finally. She is starting to
get her counts up all on her own. We are scheduled to have her MRI possibly on Monday, December 4th. Please pray for a good outcome. We met Dr. Morelli after out appointment. Payton asked him when he will take her on his boat. She isn’t shy! So we are most likely
going this Sunday if weather and Payton permits. She also told him “my mother has lost her mind, you need to give her some pills”! How observant she is! We also have our Make a Wish to Disney on November 26th to December 3rd. We will enjoy our week as a family and hopefully put out of our minds the MRI. We hope we will be able to get to see INXS this month. I think they are coming before Thanksgiving. As you all know Payton would love to see them. I played a CD of their greatest hits. She sat for a while listening and said “could you put on the real INXS CD”? She loves her JD. Sorry that this update took all week, but Payton is in constant demand. We will try to be better at keeping you all updated. My father has mailed us down cards that people have sent to Payton’s wellness. Each card and note touch us so deeply. You have no idea what the gestures/thoughts/well wishes mean to us. Children running lemonade stands to raise money to a couple getting married in Sarasota, Fl asked at their shower for no gifts just donations for Payton instead. This couple’s letter was so touching to Patrick and I and others we showed it to. We appreciate it so much. We cry all the time, not out of sadness but of the kindness you all have shown our family. Please know to all of you we are grateful from the bottom of our hearts. We don’t know how to thank you. We will do our best to personally thank you, but between caring for our children and working with the insurance companies (they are driving us crazy…it’s a full time job just making sure we are not over billed and that THEY are paying the bills). Thank goodness we have friends like Barb helping us with the insurance stuff. We keep getting the run around and it’s a shame they do this to people who are going through this. Well, that will get me going so I will end here. So far Friday has been quite for a change. We were up all night because she didn’t feel well. I think it is the new antibiotic. Please have a good day and I hope we can have a calm weekend.
It’s gonna be a good day!
Love Holly and Patrick
November 6, 2006
There are some new pics on from Halloween and I am putting some on from Dr Morelli’s boat yesterday. It was very nice of him to take us all out for some fun time together. Enjoy.
Search by last modified.
Tuesday, November 07, 2006
Today is Monday. We spent a good part of our day at All Children’s for blood work and Payton needed platelets. Thanks to all who have been donating blood/platelets in Payton’s honor. We had a pretty good weekend. On Saturday, we went to the girl’s soccer games and then took them to see the new Santa Clause 3 movie. Payton slept through most of it, but she will tell you it was a good movie. I think she just liked having the cherry slushy. On Sunday, Dr. Morelli and his wife invited us to go on their boat up in Tarpon Springs. It was beautiful. At one point, I was surrounded by our three girls. It was
priceless! Payton was too concerned with food the entire time. I brought her favorites (chicken, noodles, pretzels and Dora fruit snacks). However, she wanted Carabas spaghetti, then a happy meal, then chips, then… then…then… it went on and on. When we got off the boat we had dinner outside by the water. The girls had a great time. Thank you again to the Morelli's for spending the day with the Wrights (we are a crew). As I stated earlier, Payton’s MRI is scheduled for Monday, December 4th at 9:00am. Please keep praying for her, especially up until that day. My heart is staying strong. I feel God is greater than cancer, I pray he wants her to stay…I hope to show everyone his miracle…healing of Payton. However, my head is scared. I have such anxiety. I don’t want to lose my little girl.
Patrick talked to Dr. G from Duke. He wants to see the MRI before we schedule a flight to see him. He said that since she is still requiring platelets and she keeps having UTIs he can’t do anything anyway until she is fairly healthy. I think the only thing he has left is low dose of chemo. I don’t think there is anything else he can do. That was hard to hear today. However, he said radiation tends to work for months, so who knows. Glass half full right? I am not giving up. I never stop praying, even when we are out, driving, eating, etc. I always pray for her healing. I am exhausted.
We are scheduled to go to Disney the end of November for Make a Wish.
The girls are so excited. I hope Payton is feels well and does enjoy herself. Also, there is an ice cream fundraiser that is coming up. When we receive more details, I will post it and let you all know. Payton has been baking and baking. Her love of food is amazing! We bake all the time now. My neighbors are going to get their share of sweets this month! Cause I don’t really want to gain 500 pounds eating it all. Well, I read the latest updates. Thank you again for
uplifting us and sending encouraging words. I read a few to Sydney tonight. It meant a lot to her when so many of you included “Payton’s sisters”. She felt she mattered just as much as Payton. I am sorry so many of you have difficult getting your messages across. We are working through Patrick’s office to post the entries. Some may get lost in transaction. We are trying to figure out other options. One of Patrick’s co-workers Nicole posts the guestbook messages. I need to give a big thank you to her. She takes time out of her day to do that for us.
One of our Lakewood Ranch neighbors is opening another Cold Stone Creamery. They are having a Grand Opening Event in Payton’s honor on Saturday the 18th of November from 11:00 Am – 8:00 PM. They are located in Sarasota, on Hwy 41, 4248 South Tamiami Trail, a few blocks South of Bee Ridge. We can’t thank them enough for their support and kindness.
Well, I need to get some sleep (if possible). Please have a wonderful day. I am sorry to always request, but please we need you all to pray for our little one. That is all we have.
I do believe that we will have a good day…It’s gonna be a good day.
Always our love,
Patrick and Holly
Saturday November 11, 2006
Today is Saturday morning. We have had a full week between hospital visits, school, therapy, etc. Payton has been doing very well. I hate to write that because I don’t want to curse her. Her back is all healed and her personality is coming back. I actually see my Payton again! Even though it was a good week for us and enjoying our time together…Patrick and I are having crying spells more than ever. He has now rented space in my closet for crying. I don’t know if it is because we finally have a calm moment in our lives that we can let down our guard or that we know December 4th is coming upon us soon. We have our tearful moments. I think that is why it takes me longer to write the updates lately. Anyway, if you heard Payton talk and act you all would be amazed. If you didn’t believe in the power of prayer, you should now. She mentally is sharp, funny, and beats me in my little pony memory game all the time. Her skin looks better and as I said earlier, her back is healed. She continues to have her “headaches” but we have realized that she needs to get food and liquids in her. Once she eats and drinks her headaches are gone…no medication is needed (thank heavens). We are still on target for Disney, not sure if we will see INXS (haven’t heard back from their manager) that’s ok, they at least know about our Payton. Payton keeps thinking that she will be completely better by Disney. It has been difficult for her to know she won’t be walking by then. She also likes watching the travel channel with her dad. She has decided that she will go to England for have her English tea (we are tea drinkers in this house). Her favorite is Chi tea. We have a cup of tea together every morning. After we go to England she wants to go get spaghetti in Italy. She asked if they have desserts in Italy. After we get done eating, she then would like to visit all the castles. Food and princesses…that is all she care about. I hope I can book her trip someday to celebrate her being completely healed and cancer free. This week Payton needed platelets twice. Her counts are ok…enough to be about to participate in activities. Yesterday, my dad came into town. We took her to the park and she got on the swings. She loved it! I took her down the slide a few times and she wants to go back this morning! Jack and Donna are coming tomorrow for a week to see Payton. We will have a houseful the following week as well with most of our family down for Thanksgiving. The next few weeks will be spent with family and friends and enjoying the Holidays. Normally this is a very busy and hectic time for us and this year probably won’t be any different. It will definitely be a special time. Thanks for everyone who continues to help us, pray for us, and just be there for us. It means so much.
Love to all,
It’s gonna be a good day!
Patrick and Holly
Saturday the 18th of November
Today is Saturday around 10:00pm. This week started off fairly well and turned out to cause me chest/stomach pains. I will be honest, it has been very difficult for me to write updates. I am in a tearful mode and I am trying daily to keep positive and function with every aspects of my life. Remember when I said I don’t want to curse her
by stating she is doing well in the updates? Well, she has taken a slight downward slope in her healing. Since Thursday, she has started to have back pain and headaches. Each day it seems to get a little worse. Today we had to fight with her to eat and drink. She does not have a fever but I know she has a UTI. We didn’t get the results of her lab work from Thursday, but I am positive she has one. We called the doctor earlier today to get antibiotics and it is now 10:00 at night and they finally called in the prescription. I am feeling frustrated with everyone involved with her care. I would be here all day explaining that statement. But I am not a happy camper right now. We can not leave her side. I understand where she is coming from. To depend on others for every aspect of your care, would be frustrating. I feel so badly for her. This disease is so cruel…I look at pictures of her only 6 months ago and see such a different child. It is hard to believe what has occurred in such a brief time period. I am hoping we will make it to Disney. If this occurs next weekend, I am not sure we will go. She is so lethargic and not her spunky self. It’s killing me. There was a good moment this week. A person I have never met (Tracey Fox) wrote a children’s book for Payton. It is about seven different angel fairies. Each fairy has a special talent. It was so beautiful and amazing. She also sent seven ceramic fairies that go with the book.
It is something I will cherish forever. She said she had always wanted to write a children’s book but never had an idea. Well she go one through Payton and what a book. I am hoping she will get the rights to her book so we can print them for all to enjoy. I don’t know if I mentioned our neighbor Tiffany. She wrote a song for Payton and on Halloween Savanna and I went over to hear it. Oh my, she is talented as well.
I would like to get her song taped for Payton to hear in addition to her healing music. I have not been able to get Payton over to hear it. I hope to get her to hear the song soon. Even though Patrick and I are having some very difficult moments, we still are not giving up on miracles and prayer. Please keep on praying for our little girl. Please…plead her case. Have a wonderful Sunday. I hope to write better news next time.
Patrick and Holly
Tuesday, November 21, 2006
Today is Monday. We had our usual appointment at All Children’s today and Payton did not need platelets! Yeh!!!! However, as I expected last Thursday, Payton does have another UTI. She has shown some improvement since we started her on antibiotics on Saturday. She continues to have her headaches, but we are speculating she is not drinking enough. Therefore, we have been on a mission for some serious drinking of “Shirley temples”…sprite with cherry juice. We have definitely seen her perk up more today (thank heavens). We
received some fun news for Payton. She will be meeting the band of INXS tomorrow. They sent us a DVD documentary of them when they made their new album SWITCH. Let me tell you, Payton will watch that DVD at least 5-6 times a day. In the DVD, JD blows a kiss into the camera and of course Payton tells you he blew the kiss for her. She will say, I know he likes me. We joke around and I will say I am going to give him a kiss. She quickly yells at me and states that only she is allowed to kiss him. Then in her next breath she makes me say how much I love Patrick. Can you tell how much she loves her father! She is a major daddy’s girl! I will let you all know on Wednesday how tomorrow night goes. We are all excited. Savanna and Sydney have already picked out their outfits. I am hoping Payton is going to fell better to meet them. I have visions of her yelling at all of us or just not feeling well enough to
go. I know it will crush her if she doesn’t get to meet them. Keep your fingers crossed that she has a good day. Speaking of good days, I am sorry that my last few updates are showing my fear and sadness. I think it is because December 4th will determine everything. If the radiation did not work…that is probably all we will be able to do. My fear is of course losing my daughter, but I also fear watching her get sicker and be in more pain. When she was in so much pain the night before we took the life flight to Duke…it was unbearable. I can not explain what it was like to watch her be in so much pain. As I think I have stated before, I am praying because I believe in the power of prayer and that God is greater than cancer and miracles do happen. I wouldn’t pray if I didn’t believe. BUT as a mother, a human being, I am scared to a point I can not explain to any of you. We don’t sleep around here, and my stomach most likely is one big ulcer. I know my mouth is! Many of you have said that we are so strong and an inspiration. Well, I would like to say all of you are such an inspiration to us. You all help keep us strong and fighting. I cry at a drop of a hat anymore. I can’t even get to my closet fast enough. Therefore, I have “stubbed my toe a lot around the girls”! As I read the quest book entries tonight…you all are so wonderful. The kind and encouraging words were just what I needed. I will not give up on my daughter. I may cry more, but I am still in fight mode. I do believe in miracles and the power of prayer. It has gotten her this far. We can not give up. My little girl has made it through so many tough times, I know God must be listening. Healing takes time. Thank you for staying in the fight with us and helping us get through this horrific chapter in our life. Please have a wonderful day and a great Thanksgiving week. I mean that with all my heart. And as I could not bring myself to write in my last update…It’s gonna be a good day…no matter what, make it one.
Thank you and Love as Always,
Holly and Patrick
Today is Wednesday. Yes we made it to see INXS! Payton had a great day yesterday. She was so excited to see HER band. We made it up to Orlando around 4:00pm. Payton and the girls couldn’t wait to get dressed in their INXS clothing. Payton would not stop talking and being funny all through dinner. However, after dinner she said she wanted to get her pj’s on and go to bed. We let her nap an hour before going to meet the band. We met INXS at the House of Blues in downtown Disney. They were wonderful. Payton introduced herself to the band members and had a smile from ear to ear. The best part, she will tell you, is when JD kissed her head. Oh did she blush and had a smile a mile wide. We were able to watch the concert in a private room looking down on the stage. It really was awesome. We will post our pictures soon. You will all see how happy the girls were. We had to be at All Children’s this morning at 9:00am. It was very difficult for us to get up and drive from Orlando to the clinic, but we did it…only 12 minutes late! Again, Payton did not need platelets and her counts looked good.
The rest of the day, Payton was tired with a slight headache. I do hope we make it to Disney next week. The headaches are concerning.
We are really feeling stressed out right now. We are really going to make the best out of tomorrow. Thanksgiving has a whole new meaning for us. We will look at this day differently and appreciate the moments. I know this update is brief, but Payton is yelling at me to watch a show with her. Please have a Happy Thanksgiving. Keep the prayers coming, that is all we need right now. Have a wonderful day…
It’s gonna be a good day (we are all together)!
Holly and Patrick
Wednesday, November 29, 2006
Well the week started off pretty good. We got to Disney and the Give Kids the World Village. It was awesome! What a great thing they do for kids and their families. We arrived Sunday early evening. Monday we went to Seaworld, but Payton only lasted a few hours. Long enough to see Shamu and go back stage with the sea lions and pet and feed them. She was vomiting and complaining of headaches, so we went back to the villa. Tuesday came with more of the same symptoms, but she wanted to go to Disney to see the princess’s. The folks at Disney were unbelievable. They rallied together to find most of the characters and this really sparked Payton to have a great day. We didn’t get back to the villa until after 6pm! However, she did start vomiting again and was up at around 2am this morning with a headache. So we packed the minivan up and left to All Children’s hospital in St. Pete very early. We are here at the hospital with IV fluids for Payton and a CT scan scheduled for 2:30 this afternoon. We are very nervous and have been for a week or so because of the pending MRI on Monday. We are hoping that she just needs some fluids and she will be ok. She is hanging in there, but very upset to be back in the hospital. Make a Wish called and said we could reschedule her trip for another time if we are unable to go back this week. That is very nice of them and the people at the Make a Wish foundation and Give Kids the World are truly blessed people.
As I write this I am looking at Payton and Holly in the hospital bed watching ET. She is very content to be doing so.
We will be in touch soon.
Love to all.
Patrick and Holly
Hi everyone! This is Nikki, I do the upkeep to Payton’s website and wanted to let everyone know of an auction we are doing for Payton. Someone generously donated an Elmo TMX doll to us so we can hold an auction for it. I have added an auction link to Payton’s website and ask that anyone who wants to participate in the auction to please bid. Every little bit counts and is appreciated.
Wow Nikki thanks for the above,,,I don’t even know what an Elmo TMX doll is, but whoever donated it please know that we thank you very much!
Wednesday, November 29, 2006
10:15 PM. A lot has happened since the last update earlier this afternoon. Payton had a CT scan and it showed she had swelling in her brain. Her ventricles were very swollen and the Neuro P.A. pulled off 25 cc of fluid from her brain. No wonder she was having headaches. Holly and I were pretty scared and nervous this afternoon. The neuro doc told us that her shunt was not working and they needed to take her to the operating room right away. They were going to check out the shunt and decide if they had to replace the entire thing or just the bottom tubing in her stomach. Well the fluid came back positive for an infection so they took out the old shunt and put an external one in. So she now has a tube sticking out of her head draining her fluids from her brain. She will keep the external one for about a week or until they get the infection under control. Then she will need to go back to surgery to put another internal shunt. We are not sure why they are malfunctioning, but probably have something to do with the amount of proteins in her fluid and the fact that she kept scratching her head around the previous shunt. I must say once again she amazed Holly and I and the docs and nurses with her courage. She was back to her old self after the surgery in no time and wanting to sit up and she talked to everyone who came in the room. She tolerates pain like no one I have ever seen. Payton is on her third shunt has been through so much, but as always and again just makes me so proud of her. I am staying with Payton tonight and I am so tired my eyes are just burning like crazy. I am watching her sleep like the little angel she is and she looks so peaceful so I am going to try and get some rest…..well not really…The nurses have to check her vitals ever ½ hour for several more hours then every hour for the rest of the night. So not going to get much sleep as usual. I can’t even go back and read through this to see if it makes any sense. So I apologize if it was confusing. Just know that even though Payton had one tough day she is resting peacefully and is so beautiful.
Love to all,
Patrick and Holly.
Thursday, November 30, 2006
Today is Thursday. Payton is doing much better today. As usual we are not out of the woods yet. Payton will be closely watched and we hope that her infection clears in a week. She will then have a new
shunt put in and will have to stay another three days. As Patrick stated in the update she is incredibly brave. They needed to relieve her pressure quickly, so they came into her room stuck a needle in her
shunt to drain the fluid. Talk about pain! She keeps asking me "how long are they going to keep me this time"? And as I always answer all of her medical questions, I don't know...I have a migraine coming on, so this update will be shorter. The stress over the last 24 hours has killed my head. I have to face
it now that after next Monday I will most likely have a migraine for the entire week. For all of you who say I am strong...my head and stomach will tell you differently! Please keep praying for Payton.
This little angel needs every one of them. I hope I can write to you all on Monday...It's a miracle. Have a wonderful day, it looks so pretty out. Enjoy the day and your family. We are having a good day
so far...one day at a time. It's gonna be a good day!
All our love,
Holly and Patrick
P.S. Check out the new pictures from the INXS concert and the little time we had at Disney and Sea World. Easiest way is to view by (last modified) and start with the ones from today 11/30/06.
Just heard from the V Foundation and the Vitale’s that Dick will be talking about the V Foundation, cancer awareness and Payton live on ESPN Tuesday evening. Mr. Vitale will be on at half time during the 9:00 PM game. Pretty cool. Payton is becoming a champion herself for cancer awareness.
Love to all,
Tuesday, December 4
Well today is Monday, December 4th...The power of prayers have been
A miracle was shown today. Payton's MRI showed decrease size and number of her tumors. It was a great day. We are waiting for Dr. G from Duke to review the MRI's and confirm what we were told/shown. There was a lot of crying today. There are no words to describe how we feel right now. We have had such bad luck and news for so long, this was so needed for us...for Payton. I prayed all weekend for God to give me a sign on his plan for her. I hope this means she will recover and stay with us. I don't want to push my spiritual beliefs on any of you, but in my heart Payton's condition is out of any ones hands. The only thing that can help her is God. I feel that all of you helped her so much by praying and asking for her healing. I cannot thank all of you enough for that. Tomorrow, Payton will be getting her new shunt put in...if her third spinal fluid comes back negative for infection. If she has surgery tomorrow, we will be home on Wednesday. Yeh!!!! We also found out that we can retake our Make a Wish trip. I hope we will be able to go soon...she is doing so well right now, I don't want to miss this good opportunity. Well, as I knew I would get today...Migraine...I need to lie down. I am staying with Payton tonight, so the chair will be my bed. Thank you all for the kind words, well wishes and prayers. As you see, it worked!!!!!! Please don't stop we are not out of the woods yet. Please have a good day...It's gonna be a good day (today was proof).
All our love
Tuesday December, 5th
I am sitting here at the hospital (All Children’s in St. Pete) with Payton. She is sleeping soundly. I am watching the Louisville and Arizona college hoops game announced by Dick Vitale. It is the Jimmy V classic. The foundation is raising money for cancer. Dick Vitale is such a great champion for cancer and the V Foundation. I couldn’t stop crying at ½ time. Dick was talking about cancer and Payton on national TV at ½ time. He didn’t just mention her name, but he talked about her and what she is going through. I can’t thank him enough for what he has done for our family and for cancer. I hope she helps the V Foundation raise millions and millions for cancer research! WOW it was pretty cool. I have been on a high for a day and this was a great way to end my night.
I am a big fan of the V Foundation and if you are looking for a good way to help fight cancer this is a great way. I heard them say they now can give everything they raise to cancer research because of the endowment they have, so every penny should go to fight cancer. I am not just a fan because they are donating a 50,000 dollar grant in Payton’s name to Duke. They do a lot of great things. Check them out online at www.jimmyv.org
Payton didn’t get her operation today, it has been scheduled for tomorrow. Hopefully we will be out of here by Thursday. Payton was crying a lot tonight asking to just go home….She is such a good little girl. I am so proud of her and how she handles herself. She is so beyond her years and is such a fighter.
I talked with Duke today and they have her MRI that I sent overnight and Dr G should be able to look at her scans tomorrow. Hopefully he will confer with the doctors at All Children’s. I am still very nervous and will be until we hear from Duke. One day at a time.
I wanted to thank everyone for the calls and emails on the news of her MRI results. I think everyone, not just us, were in need of some good news. We are still in for a long haul and we continue to need your support, thoughts and prayers.
We are so appreciative of everyone who continues to be in this fight with us. Good night and God bless.
Love to all,
Patrick and Holly
Thursday, December 07, 2006
Well, it is now Thursday morning. I am a bit late getting Holly’s update on. Here it is. I just spoke to Payton and she sounds great! Can’t wait to get home she says. Should be this afternoon! Cross your fingers.
It is Wednesday evening. Payton had her surgery this afternoon. As of this
moment everything went fine. I am very nervous to go to bed tonight. After
our last shunt installment at Duke (major seizures etc...) I am fearful of it
not working. There are so many complications that can occur. I keep telling myself to stay focused and positive...it is becoming very hard work! We hope we will be able to go home tomorrow. However, the doctor stated that he would like us to wait three more days. He took another culture of her spinal fluid and
wants to see the results. I don't want to risk anything, her well-being is most
important. However, I was instructed today on how to administer her IV
antibiotics when we get home. I don't think it should make any difference if I administer it at home or if she gets it here. (Except she will be more happier at home)! If the culture shows growth, all they would do is change her meds. I am already administering her meds...I'll just get the new meds. I think it is more risky staying in the hospital where she has more chances of getting an infection then me taking her home. Anyway, I will be giving my speech tomorrow...lets hope they agree. As I have stated earlier, my eyes are becoming wide open on the need of change in our medical care. I found out that Manatee County does not have pediatric home health. That is why I had to be training on administering her IV antibiotics. She will be getting her antibiotics 3 times a day that run over 2 hours. Her schedule will be 6am,2pm, and 10 pm (which means I won't get to bed until midnight)! Oh well, I'd rather have her home...I'll stay up all night if I had to just to have her at home. She wants to be home so badly; Patrick and I will do what ever we need to do to make that happen for her. I spoke with a hospice agency up here, they would like to branch out to Manatee County. They need me to write a letter to help them with the process. As you all know, Patrick and I will do anything we can to help future families. I'll keep you posted if they are successful in branching down our way. We have not heard from Duke yet. Patrick and I are very nervous. I have felt so blessed that my little one had a miracle happen to her. I guess I don't want this bubble to burst. I hope he doesn't come back and say we can't do any thing more. We had such a good week, I am so afraid for her, for us. This is why my stomach and head pains have not gone away. I know I have said this on my last update, we had the most wonderful news and miracle but we are definitely not out of the woods. I hope that you all continue to pray for our baby. I cannot thank each and every one of you for hanging in there and sincerely praying for Payton. I honestly feel that the power of prayer is what helped Payton. You all are helping us save our daughter. Please keep pleading her case to the big guy! I have learning so much about prayers...there are so many others that I pray for each night. I hope the heavens hear my additional prayers. Well, thank you for
checking in on Payton today. Please make it a great day...It's gonna be a good
All my love
Holly and Patrick
Tuesday, December 12, 2006
Today is Tuesday. Well, Payton, Mimi and I spent all day on Sunday at
All Children's emergency room. As I think we put on the last update, we had to administer her IV antibiotics at home. It was going smoothly until Sunday. We had a really hard time getting the antibiotics into her that morning. We called the doctor and as I stated, went up to the ER. They had a really hard time getting her port to work. We were sent home with medicine to help dissolve the
clot in her line. Thank heavens Payton has a double port. We are able to use the other port to administer her meds. On Monday, we had our appointment at the clinic. She needed platelets (her count was 66 and she needs to be 80 and above per the neuro team). Again, they tried to get her port working, but were
Unsuccessful. We will be going back to the clinic on Thursday for blood count check and the IV team will once again try to get her port working. The poor little thing has to keep getting stuck with the needles. But as I always say, she is a trooper and a BRAVE little girl. Payton has been feeling pretty good. Last night she and her sisters were playing Bratz dolls in her room. They all were sitting on the floor (Payton in her floor chair). It definitely was a great
moment for Patrick and me. She has been talking lately about not wanting to play with little friends only big friends like Mimi, her sisters, mom/dad, etc. She also thinks she is not pretty without her hair. As much as we tell her she is the most beautiful little girl and that you don't need to walk in order to play...she is FOUR and were trying every moment to help her. Sydney did a really great thing with Payton the other morning. During one of their games, Payton said she couldn't play because she can't walk. Sydney firmly told her that you don't need to walk to play. And continued to tell her that she was not moving until Payton started to play. It worked. Payton began to play the game with a smile on her face. I am so proud of my girls. They are wonderful children!! I hope they are understanding the meaning of being a family and sticking together through thick or thin. We are going to take Payton out this week to look for a wig. We called the cancer society about a wig, but it will
take up to 10 weeks to special order it in. I don't even know what or where we will be in 10 weeks. So I will look for something and ask my hairdresser to fix it for her. I am sorry for the delay in our updates. Ever since we brought Payton home on Thursday, we have been going and going. Friday was awesome. Payton baked with Mimi (a ton of cookies). We also decorated the tree and house. By Friday night Mimi, daddy and I were exhausted!!! A good exhausted!!! Well, as we have been doing, we are taking one day at a time. We have had wonderful days and we are truly grateful for these moments. Christmas will be cherished more than ever. We are waiting to hear when we can go back to Disney. I requested either the first or second week in January. I don't want to wait, she is so happy right now. Duke confirmed what All Children found with the MRI. Everyone was surprised by the results. We are not going to do anything right now. Dr. G (DUKE) stated that radiation is still working and if you give her chemo, you wouldn't know if it is the chemo or radiation. So we are to wait, which is going to be very hard. I ask and plead to all of you to continue to pray for our little angel. I hope you realize how much the power of prayer has worked for Payton. We are not out of the woods yet. I thank God every day for his miracle and hope his healing for Payton continues.
As I have stated last week, we are blessed! The next time we do an MRI will be just as stressful as last Mondays. I can't even express to all of you what it was like that day. It was a horrible morning to wait to here what is happening to your child. Savanna has been told by some of her peers that their parents are tired of hearing about Payton Wright...my comment to Savanna is Good! That means we are doing our job and getting the awareness of childhood cancer out
there. It is a shame that we think that doing the minimum is ok...all I know is for me we are not doing enough to help our kids. We can't stop this fight...not for Payton and not for the children out there with this disease. Please don't stop fighting. We have witnessed so much, on Thursday there was a little two year old that passed away two doors down from Payton. It really hit home that day. Here I was feeling happy to take my daughter home and having good news...and this family was going home without their little girl. Thank you for all of your support, it’s always meant so much to us. On a brighter ending,
do you remember I told you about Tracey Fox who wrote an angel fairy book. Well, she wants to share that book with everyone. She called me today and told me that THE LITTLE BOOK WORM store on Main Street will sell her copy of this book. She said it should be in the store this weekend. I am hoping that she can do a book signing with the artist Ms. Callie (Payton's previous pre-school teacher from Harvest Methodist church) after the holiday season. I will keep you all posted on this. Please go and check out this book...it is wonderful!!! Well, we had a great day today and I hope it will continue. But as you all know I take each day as it comes. Please have a wonderful day...It's gonna be a good day!!!
All my love
Holly and Patrick
Monday, December 18, 2006
Today is Monday. Seven more days until Christmas. We are hoping that we are at home and not at the hospital. Payton has not been feeling too great the last two days. She came down with major poops on Saturday and has not stopped since. We were at the clinic today and her counts started to go down. Her platelets were at 84 (over 80 is ok). So no platelets today. I hope they go up by Thursday or we are staying the day at the clinic for platelets! Payton has another UTI, back to the antibiotics. She was doing ok today until later this afternoon when she started with the vomiting. I gave her medication without a full stomach. The rest of the night (so far) she has been doing fairly well. I finally had a melt down today. I was cleaning up her vomit and changing her runny poopy diaper and just started to cry. I have to admit...I am so jealous of everyone. I want so badly to have a normal quiet life again. I am so angry at this disease! My little one needs a break. How we all take for granted good health. This poor little girl only gets one or two "feel good" days. But again, as I have been stating, she is a trooper. Even with all this, she still wants to play and be out of the house. We also, had our neuro appointment today. She had all of her stitches out (head and stomach) all related to her shunts. She did cry but kept still for the doctor. Everything looks good from the neuro team. She is scheduled for a CT scan in 3 months to make sure everything is working properly. I wish we did that with her last one. We got the call from Make a Wish. We are scheduled to go Jan 5th. All three girls are getting excited.
Payton will have such a great time if she can just stay healthy for a few more weeks. Well, I hate to make this short, but I have been up the last two nights with Payton (changing her diaper through out the night so she doesn't get any skin breakdown). That's all we need is another sore on her bottom. I will sacrifice sleep to make sure she is clean and dry! Well, if this all seems scattered, I am just so tired. Please continue to pray for little Payton. We need those prayers so much. I hope to update tomorrow to fill you in Payton's progress. Oh, I will tell you that Ms. Sam worked with her on Saturday for therapy. Payton rolled over and stood (with major support) but she stood up. She loved it and wants to keep coming back. On my last thought, I think the book I told you about is out and available at Little Bookworms. It is a great book and encourage you all to go take a look at it. Thank you again Tracey for writing such a beautiful book for Payton. Ok, now I am done. I can hardly keep my eyes open. Thank goodness Patrick and I are good a tag teaming. I need some sleep. Well please have a wonderful day tomorrow. Don't sweat the small stuff and enjoy the moments. It's gonna be a good day! Please Please pray for Payton...it has made a difference so far.
I love you all
Holly and Patrick
Thursday, December 21st
Well today is Thursday. It has been a bad week. Payton continues to not feel well. She has had major poops with occasional vomiting all week. Patrick and I take turns every night staying up with her and/or checking her diaper. We don't want any more skin breakdown, so we have to keep her as dry and clean as much as we can. We have been at All Children's everyday this week. We are waiting for some tests to come back to see if she has an infection or if this is just an intestinal virus. All I know is we are all not happy campers right now. I feel so sorry for her and the girls. We are so close to Christmas and it just hasn't been too much fun around our house. I was able to take the older girls to see High School Musical show in St. Pete. I have to admit it was a pretty good concert. The girls loved the show. They needed to have a good time. Payton was supposed to go...however she ended up going with Mimi to the airport to pick up Papa. I think that was better than going to the concert! Today we were supposed to see Santa in Tampa, but we are hanging out at the clinic today. We have been here since 8:30 am and will not be leaving until 5:00pm. She needed platelets and fluids for dehydration (5 hours worth of fluids!!!!!!!!) Well maybe tomorrow I can get some Christmas shopping done. Thanks to all that have helped us out during this season. As we have said many times, we are so blessed to have such wonderful, awesome friends (some I have not even met in person...just talked through phone/email). Patrick and I had a conversation about if we are doing the right things for Payton...not just with Payton's health care but having this website and getting the awareness out there. We have heard some "not so nice" comments and it really breaks my heart. I hope that I am doing justice to Payton by keeping this website up and running. I know it is hard sometimes to express our feelings/beliefs/etc. I guess what I hope and try to get across is Payton is a little girl who is not just a poster child, case number, a "bad luck" kid with cancer. She is a little 4 year old, my 4 year old. We also feel that for a few people who "just don't get it" there are hundred/thousands more who do and you all have been wonderful. Thank you for standing behind us with your support and prayers. You have no idea how much it all means to our family. Unfortunately there are a lot of "Payton's" out there and I hope we help in some way. All I know is she has gotten so far with all of your help in prayers...Patrick and I will be forever grateful for your help in supporting us/her. Please continue to say extra prayers for her and we hope you all have a wonderful holiday. I hope you had a great day...It's gonna be a good day!
We also want to thank so many of you for the beautiful gifts you sent
Payton. They all have a special place in our hearts.
Well,,,,,this is an update from last night. I just was unable to get this on Payton’s website. Holly wrote the above update and I wanted to add something as well. This morning so far Payton is doing great! Holly told me not to put it on the site, it might jinx her….We are taking her to see Santa today! Can’t wait. The Bradenton Herald newspaper is doing a story tomorrow (Sat) on faith and will include Payton and another member from Harvest Methodist church who is struggling with a disease.
I would also like to say that we are so sorry for not getting Holiday cards out this year. I tried to get them out this week, but Payton was at the hospital just about every day and ran out of time. Just know that we wish everyone a happy Holiday! We have enjoyed opening all of your cards and can’t believe how some of the kids have grown.
Holly and Patrick
Tuesday, December 26, 2006
Happy Holidays! Well we have so much to be thankful for this holiday season. On Friday, we went to Tampa to see Santa. We waited over an hour and it was worth it! Payton actually sat on Santa's lap. As first she was very afraid, but Santa was awesome. He told her "Santa loves you and I promise I will hold you tight and not let you go". So off she went onto his lap. He began asking us questions about Payton and here we find out that he works with Make a Wish and Give the Kids the World Resort. Poor Santa began to cry and needed a small break to compose himself. He was a great guy! As many of my friends know, all Payton wanted for Christmas was Moon Sand and a Baby Alive. However, when Santa asked her what she wanted she said IPOD!!!! As Santa was crying he said "sweetheart, not only will Santa bring you an IPOD but I will pray for you everyday". Well, guess what I had to do on Saturday morning (IPOD searching)!!!! Christmas eve was so much fun. Our family was scheduled to participate in the 5:00 service (reading and lighting candles). It was hard not to cry standing in front of everyone and looking at my girls. Savanna, Sydney, and I read...Payton and Patrick lit the candles. All night Payton kept waking me up and asking if I thought Santa came. She was so excited...I loved it!!!! I also have to tell you this was the first year the girls woke us up. For 10 years, it has been Patrick and I waiting for the girls to get up. The girls got us up at 6am! They all had a great time opening up their gifts and Payton just smiled and played all day. My mom called me this morning and said "wasn't Christmas a great day...just watching how happy and playful Payton was... made our day." So as I said earlier, we had a great holiday. One we will cherish!!!! Payton as one point last night during dinner took my mom's hand and said "Mimi I love having dinner with my family...this is a great day". What more can any parent ask for. Well we have to go to the clinic tomorrow. Hopefully it wont be an all day event. She is feeling much better and I only hope it stays that way (at least a little while). I have come down with a cold so I am trying very hard to keep it to myself and not spread it (wish me luck). Well, thank you again for all of your blessings this holiday season. We are so grateful to have you all in our lives to help us save Payton. I do hope you all had a wonderful holiday. Make today a great day...It's gonna be a good day!
All our love
Patrick and Holly
Besides the above update….I have also added about 5 pictures. Mostly of Santa at the International Mall in Tampa. View them by hitting the last modified tab, the pictures where put on today Dec. 26th. Happy Holidays.
Friday, December 29, 2006
Today is Friday. Last night I was finally able to get onto the computer and read all the guestbook entries. WOW! You all are so amazing. Thank you for the encouraging words and support (as usual) for all of us. I had to write to tell you all THANK YOU! I was glad to hear so many have a wonderful holiday and get the most out of your days. Payton is working everyday trying to get stronger. We were at the doctors all day on Wednesday. She needed platelets again. We received so many blood bank cards the last few weeks and we so appreciate you taking the time out to donate blood/platelets in Payton's name. I asked the doctors why she is not be able to keep her platelets up...they said the platelets are produced in the bone marrow. Payton's bone marrow was hit HARD by radiation. Therefore, it will take a long time for her to recover. I think I stated in my last update that Payton is having pain in her toes. Well, she continues to
occasionally have pain in her feet. We are hoping the nerves are regenerating. I am sitting here this morning and watching her eat her waffle, carrots and ranch and a piece of American cheese. Her drink of choice every morning like her mom is CHI TEA! It is great to see her eat. Next week we will be going to Disney. We also have a princess dinner scheduled. I can't wait for the trip this time. Payton's next MRI is February 7th. So...I went to the doctors yesterday to get medication for this upcoming date. Dec 4th almost killed me mentally. I need something to help me for February. I think this date will be worse. Because I know how good the last MRI showed and we couldn't do anything. Now, this MRI will determine Payton's outcome. I am scared. BUT,,, I do believe in the power of prayers and miracles. You all have been helping us since Payton became sick...please continue with your daily prayers. SHE needs them even more. We continue to be focused and enjoy our children. Thank you again for all your efforts to save our Payton and support our family. We could not have gotten this far without all of you. Please know that. As I always say and mean from the bottom of my heart...have a wonderful day and It's gonna be a good day.
I love you all and thank you!
Patrick and Holly
Thursday, January 04, 2007
Today is Thursday. We are at All Children's today for platelets. Her other counts are staying steady...thank heavens. We have all been doing fairly well. On Monday, Payton started to have blood in her stool. We are having tests done to make sure all is well. So far everything has come back negative. They feel that when she had the severe intestinal virus, all the loose stool aggravated her intestines. Payton is getting very excited about Disney and having dinner with the princesses. All she wants to do is pet the sting rays and ride the Dumbo ride. I hope this will be our trip to have our great memories. Not like last time! The girls started school today and I think they were excited to get back to see their friends. My mom went back to Pittsburgh with my dad yesterday. So we are solo for a while...she is a very big help to us!!!! Payton continues to have some pain in her toes. The other day I was painting her toe nails for our New Year's Eve night out. (The girls love to get dressed up in all their glitter clothes)! Anyway, as I was taking the old polish off her toes she started laughing and said "stop tickling my toes". I couldn't believe it. I said "you can feel me?" She said yes and I feel the side of my foot. So for about 30 minutes the girls and I just sat there tickling her toes! It was great!
We had a wonderful New Year's. Patrick and I felt so blessed to look in the back of our car when we were driving to our parties and look at the girls all dressed and happy. We were all together bringing in the New Year. It was a moment we weren't sure we would have a few months earlier. When we think back of the Friday we were told to bring in family because it was touch and go at Duke...and here we were smiling and being a family...it meant so much to us. I pray everyday that 2007 will be our year of great health. Don't ever take health for granted...it means more than any amount of money, things, etc...You can't buy health. It is the only thing that matters in this world. I am not trying to preach to you all, but through all this we have seen adults and children go through so much pain and sadness. Do all you can to keep yourselves in good health. I am putting that on my list as well. I have left many doctor appts go because "I don't have enough time". I am not using that as an excuse anymore. I care so much about all of you. You all have touched Patrick and I (as well as our family) so deeply, I don't want any of you to experience any of this. So make those doctor appts, stop smoking, walk more, eat better and enjoy your life (laughter is needed for health)! As February 7th approaches, I will again start having more anxiety, so please hang in there with me. I am very nervous. Payton is not allowed to have anymore radiation. If her cancer spreads...there is not more anyone can do. I think the hardest part for me is that in December Payton was in a lot of pain and very sick. Not that having her pass away at that time would be easy (it would have nearly killed me as well) but I didn't want her to suffer. I don't want my little baby to go through this horrific pain. I do have a strong spiritual belief and felt she would be without pain and in a very good place next to god. However, now that she is so full of life again. I haven't seen her this good since July!
She plays all the time, eats/drinks/poops/laughs/argues with us and her sisters/ect...we are the family we once were. To go in on February 7th at 9:00am and do another MRI...if it doesn't come back positive...it will be like I was told she had cancer all over again, but with the words of I am sorry she has----time left. I am shaking with tears in my eyes as I even write those words. SO...as I have said previously...I believe so much in miracles and the power of prayer. I asked god the morning of December 4th to give me the sign that you want her to tay...that you need her to stay. I felt that hearing the great news of the cancer shrinking was my sign of him needing her here. We are not out of the woods at all. Please keep those prayers coming. I know that the power of prayer is working for our Payton. I thank god everyday for his healing of her. Even though Payton is doing ok, please keep up the prayers.
Also, Jan 21st (I think) is a book signing of Tracey Fox - angel book at Little Bookworms book store. I was just in there the other day and I left the info in my car. (I am at the hospital room so I can't get it). Anyway I will let you all know the times and I hope to have Payton there for her to meet/see you all. I promise to keep you posted on our trip.
From our family to yours...Happy 2007! Make it a great year and remember It's gonna be a good day!
Holly and Patrick
Thursday, January 11, 2007
Today is Thursday! Sorry it has been a while since I last wrote an update. Yes we went to Disney and Yes it was amazing!!!! We just got in late last night and I spent most of today just organizing and helping the kids finish up the last of their homework. For their teachers reading this, yes the girls did a page of homework every day! I was going to write an update earlier in the week, but because I am now a nervous psycho woman, I didn't want to curse our trip. This
was a great vacation for all of us. Payton had so much fun and was without pain in her head, stomach, back, belly, etc...We haven't seen her be so happy and talkative for such a long time. This update might be long. I will try to capture the highlights of our trip. Friday, we went to downtown Disney to take the girls to Rainforest Cafe. The last time we were their, was a few days before we found out she had cancer. So we wanted to go back for better memories. After that we spent the evening at Give the Kids the World resort. They have a movie theater (which we went twice) with all the popcorn, soda and candy you want. The girls were at the snack counter more than in their seats. A merry go round which Payton rode at least 12 times! The famous ice cream store with
unlimited free ice cream --it opens at 7am!!!!! The mushroom house with toys, etc inside. There was so much to do for the kids. There were a few times Patrick and I looked at each other and couldn't believe the difference this trip was compared to last time we attempted Disney. Payton enjoyed everything the resort had to offer. She even played putt putt golf, rode the train, and took a wagon/horse ride. All these things may sound average, but to us...seeing Payton actually doing things and participating was HUGE! On Saturday, we went to Epcot. As we walked into the park we found a multicolored stone angel bracelet on the ground. Pretty strange. There were other little surprises we found along our trip...which were...strange as well. Payton went on the (we call it the Epcot ball ride) I forget what the real name is, but the entire time she was talking about Jesus and God. We promised Payton that when she is better we will take her on a trip. Payton stated she wants to go to England to have tea. If all of you don't know, Payton and I are BIG TEA drinkers (Chi only for Payton). Then she wants to go to Italy for pasta. What better place to grant her wishes than EPCOT! We did it all! To top off the night we had a princess dinner in Norway. Payton was called the top princess of the night! You will see pictures of lipstick kisses all over her face. She told each princess where she wanted them to kiss her. She loved it! Sunday we went to Sea World. Payton didn't pet the stingrays, but did put her hand in the water. She got to feed and
pet the dolphins. I think each of my girls loved feeding the dolphins the best (especially Savanna..dolphins are her favorite). This too was a better visit at Sea World (we almost sent for an ambulance the last time we were their). Monday was Sydney's birthday. We went to Animal Kingdom (Sydney loves elephants). Payton rode on some rides and had a great time. The bugs life show scared the @#$$ out of her! She kept telling us why we would take her to that kind of show! That night we went to Midevel Times for dinner. The kids loved that you don't use utensils (except for Payton...they needed to bring her a fork)! We cheered for our knight, but he was killed in the second round. Payton was very upset and we had to tell her it was pretend...just a show. I
don't think she believed us. Tuesday we went to Magic Kingdom. Payton and the girls loved it. We went on a lot of rides. We even got her to ride Pirates of the Caribbean. If many of you don't know, I love Jonny Depp in that movie...I love him ALOT! Payton is a daddy's girl and is VERY protective of her father. Needless to say, she did not find the ride fun and was yelling at me the whole time for me to tell Patrick that I love only him and not "Jack Sparrow". The best part was when we left the ride to go right outside to a REAL life Jack Sparrow acting out for the crowd. Oh, Payton was not happy. Many tears and yelling occurred (Payton at me). Patrick could do not wrong in her eyes at that moment. Patrick tried to get me to go up and get someone to bring the actor over to Payton...I think it would have given her a stroke! If she only knew how her daddy is a troublemaker! Wednesday we went to Universal/Island of Adventure. It was not a park for Payton, but as long as we fed her chicken/fries and candy, the girl had a great time. She got to see her Curious George and take a picture of him. The older girls are definitely getting older. They tried new rides this year and had a really great time. I am so proud of them. We all had so much fun I can not explain it to you. I think we have been so stressed and worried for so long, it was nice to just play. I have to go take Sydney to gymnastics now, so I will have Patrick finish. Please keep the prayers coming. February 7th will be here way too soon for me. Please help me help my daughter...keep the prayers coming. I can not thank you all enough for that. All my love to each of you.
Out the door she goes…..I must say we had a great time and as Payton’s dad it was great seeing her laugh again. For so many months we could not get a smile or laugh out of her. We continue to thank so many of you for your cards, gifts and prayers. It means so much to us.
It's gonna be a good day!
Love to all,
Patrick and Holly
Sunday, January 14, 2007
Today is Sunday. I think we have finally calmed down since Disney.
Payton and the girls still are excited to tell everyone they meet about their trip. I know I always say this but I want you all to know how thankful I am for all that you do for us. These last few weeks have meant so much to Patrick and me. Just to see our household be "somewhat normal"...kids playing/fighting like siblings, doing overdue housework, and just having a slightly decrease in stress. For example, Payton now goes upstairs to play with Savanna and Sydney. Today she and the girls spent all morning playing with their American Girl dolls. She sat on the floor (with support of pillows) and played. Yesterday Patrick put the heater on the pool. Well we were busy all day and didn't get a chance to get in the pool. When Patrick talked about the pool later that night, Payton got all excited and said "I want to go in and swim"! Well, enough said. Savanna, Sydney and I took our clothes off and jumped in our underwear. (I didn't want Payton to think too much about what she just said). Patrick hurried and put a swimmer diaper and a swimmer vest on her and in she went. She LOVED IT!!!! We couldn't believe it. She hasn't been in water (not even a bath...we sponge bathe her) in months! She first tried to swim without me, but she doesn't have good trunk control yet. Therefore, she would fall forward. I didn't want her to get scared so I made her hold on to me. She stayed in the water for almost an hour...enough to make her hands look like raisins. We did take pictures, Patrick will put them up soon. Unfortunately, Payton has not had any more pain in her feet/legs. I know that sounds horrible for me to say, but I would love to know her nerves are regenerating. This week Payton will have her regular doctor appointments and therapy. We are going to get her an electric wheelchair. I can't remember if I wrote in the last update about her seeing a little 5 year old (at Give the Kids the World) in an electric wheelchair and really wanted one. She said she doesn't want anyone to push her anymore. I think it will be so good for her to be more independent. Patrick and I are looking into pediatric spinal cord rehab clinics. But we want to wait until after Feb 7th. Every time I say or write that date my hands hurt and I feel sick. I am so scared of that day. I just don't want these last few weeks we had to end. However, I am going to stay positive, brave and HOPEFUL!!!! Because as we all know that is all we have control over. I do hope you all are having a great 2007 so far.
I did want to let you know that the book signing of Tracey Fox's book "Seven Little Angel Fairies" will occur on January 20th (Saturday) from 11-1pm. There will be a fairy face painter there as well. As I always hope and pray, that Payton will feel well enough to attend and meet you. Again, I am not sure if I said this earlier (my brain has been a bit out of touch)...Tracey has always wanted to write a book. It wasn't until Payton became ill that she came up with her idea and had the courage and push to write her first book. I am so appreciative that she wants to donate the proceeds to Payton, but I am really wanting everyone to support Tracey. I hope this gives her the confidence to write more books. She and Callie (the illustrator) are so talented and I will forever be touched by their book. So I hope Tracey and Callie have a wonderful turn out at Little Bookworms on Main Street this coming Saturday. Tracey has been so awesome in her role with support to Payton. Thank you Tracey and Callie! I also have a request for Randy and Katie Mellor...could you sent me your email or address. I don't have it and would like to get in touch with you. Also, I would like to thank Cherie Melton for her purchasing and giving the Elmo doll to Payton. Again, I can not thank all of you enough for the time you spend thinking about us and helping us through this difficult time. Please know how grateful we are...I really want you all to know that. Please have a great week and It's gonna be a good day!!!
All my love to you,
Holly and Patrick
Thursday, January 18, 2007
It is late Wednesday night. Well, Payton has been a busy little girl this week. We were at the clinic on Tuesday for blood counts and she did not need platelets! The platelet count is going down but at a slower rate. We go back tomorrow to the clinic and I will be surprised if she doesn't need platelets. If she doesn't need them tomorrow...that will be two weeks she didn't need blood products. Payton does have another UTI. She is on a major antibiotic for the next two weeks. They couldn't make it into a pill, so she has to take her medicine in liquid form. She is NOT HAPPY! She has been going to Children's Therapy Assoc. for her therapies (OT and PT). Payton is getting stronger everyday. For example, she sat up for 2 hours playing with her Bratz dolls without assist. She then came down stairs and finished her cake she and Mimi baked for Sydney. (Payton called my mom while we were at Disney and asked if she and my mom could bake Sydney a birthday cake...it had to be a princess one...she wanted it to be a surprise...it was her gift to Sydney). Well they pulled it off...Sydney was surprised and the look on Payton's face was priceless...she was proud. My mother on the other hand looked very worn out! My mother bought a very detailed Cinderella cake-making kit. She loved baking with Payton, but said this was her first and last cake decorating. Well, until Payton or the girls ask her again! Mimi can't ever say no to her grand kids. After the cake activity, Payton went to therapy. She worked so hard today. When we came home she again played upstairs with her sisters until dinner. I will say by 7:30, Payton was done. She cried all the way to bed on how tired she was. I don't blame her...her little body is working areas she hasn't used in so long. We are all so proud of her. We are ordering her a power wheelchair and hope to get it within the next two weeks. I got the girls report cards today and they did awesome. Savanna got all A's and one B (social studies). Sydney got a perfect report card as well (they don't use the A,B,C,D, F system... only S and NS until 3rd grade). So I feel pretty good the girls are hanging in there through all of this. I am lucky! Well, I hope Payton will feel well for Saturday for the book signing. Thank you to so many who are showing support to Tracey and Callie. They worked so hard on their book. It's nice to see some positive things. And as I usually ask, please pray for Payton. That is ALL we need. I am hoping for prayers for this coming February. Thank you for helping us. Please have a wonderful day tomorrow...Payton said today as we were getting out of the car to go to therapy..."mom isn't it just a beautiful day, the sun is out and we are together". Her point is...enjoy every MOMENT...she is. I see everyday through her and it is awesome! It's gonna be a good day.
I love you all
Holly and Patrick
Sunday, January 22, 2007
It is Sunday evening and we are exhausted. First, I would like to thank everyone who came out to support Tracey and Callie. I was so happy for them. They sold out their books and have a long list for orders. If anyone wants a book I have been given permission by Tracey to give out her email. If you are from out of town, she said an extra dollar would cover the shipping cost (her email address is firstname.lastname@example.org). I also want to thank the owners of Little Bookworms for allowing Tracey and Callie to have a book signing and selling their book. They are a wonderful independent bookstore and it is so nice to see everyone coming out to support not only Payton, Tracey and Callie but their
business as well. They are wonderful ladies. I will tell Patrick he needs to get the pictures on the website. Payton showed up for over an hour and YES she signed some books. At one point she said to my mom, "they are giving me so much work to do" and then she clicked her pen and said "I am done signing...Lets go". It was great for ALL of us to attend. To go back a few days, on Thursday Payton did not need platelets again. Her count was 52 on Tuesday and 78 on Thursday. We are assuming radiation is not working anymore and her body is healing. I have mixed feelings about all this. I want the radiation still in her body to make sure it continues to shrink the tumors. On the other hand, now that she is healing if Duke has to do anymore treatments they are able. Dr. G said no matter what, he would not be able to provide anymore treatments until she begins to show stability (keeping her platelets up on her own). So I guess that is a good sign. But I am more worried than ever. Well I don't mean to make this short but I have a good migraine coming on. Please help me with your prayers for Payton. I also hope you all make tomorrow a great day. It's gonna be a good day.
All my love
Thursday, January 25, 2007
It’s noon on Thursday. Just downloaded some new pictures. Most of them are from the Make A Wish/Give Kid’s the World trip to Disney. See the news one by hitting the last modified tab and get to the ones added today Thursday the 25th.
Holly just got back from the hospital this morning with Payton. Her platelets are up even more now and the ultrasound from this past Monday showed her organs to be pretty normal. So great news and anxiously awaiting the Feb 7th MRI.
I am going to add an article to the site that was in the paper about Payton and the book that Tracy Fox wrote. It was pretty neat.
Have a great day,
Patrick and Holly
Thursday, January 25, 2007
Today is Thursday. Well, today we went to the clinic for our usual blood check. Payton's platelets are at 84! It's funny; I was talking a few weeks ago to our dentist for the girls (Dr. Santos office) about scheduling an appointment for Payton. I was asked if there is anything they can do. I said well besides everyone’s prayers, we are in need of donations of blood and platelets. They said "oh we didn't think she needed them anymore"...I said, "oh, yes she still is getting platelets". Well from that day on, Payton has not needed any more blood products! It has been awesome to not have to access her
port every week! However, we are going through a very calm moment right now. And as I have said before we are not out of the woods by any means. So, please continue to donate blood and platelets. I am so ever grateful for your wonderful generosity when I receive the cards of blood donation in honor of Payton. On Monday, Payton had an
ultrasound done because they wanted to check to make sure everything was ok with her kidneys and bladder. Well, today we were told so far so good! We still need to perform a dye test that will show if any urine is leaking back into the kidneys. But it was nice to know her kidneys looked good. I was a bit nervous.
This week Payton had a play date with her friend Deklyn at Deklyn's house. It was the first time I watched my little girl play and act like a regular 4 year old. She played on the floor and watched a movie in Deklyn's daddy's chair. While Payton sat in the chair, Deklyn put Payton's wheelchair next to Payton and sat in Payton's wheelchair. It was priceless to watch. The two of them are tea drinkers, so they had cookies and hot tea for their snack. Trina (Deklyn's mom) and I think they both need to live in England. Payton and Deklyn also talked and planned out each other’s birthday parties. Payton said she wants her birthday party to be a tea party. She wants all her little friends to bring their American Girl dolls over for tea. No matter what February 7th shows, Payton is having her tea party (even if I have to have her birthday early)!
In therapy (OT and PT) Payton is getting stronger everyday. She is sitting longer without fatigue and assist, crawling and just showing improved endurance. We were told that maybe next Thursday we would get her power wheelchair. She is very excited. Payton's hair is slowly coming in. It's hard to tell because she ALWAYS is wearing this red hat (even to bed). She NEVER takes it off. Well, it is hard to believe that in almost two weeks we will be getting her MRI. I can tell it is coming up because I am becoming very short tempered and unable to focus on anything. My mom and I have many discussions about this MRI and we both feel how this one will be worse in the sense of us waiting for the results. I remember writing how I missed my Payton. Well, I feel I do have my Payton back and I don't want to hear that I will lose her. I am keeping my faith and work hard every day to keep positive and HOPEFUL. I was talking to the older girls the other day and wanted them to know that Patrick and I love them so much...that we know so much revolves around Payton but no matter what we love them just as much as we love Payton and to never forget that. I also went on to say that I hope they are keeping up with their prayers for her and our family. I referred to Horton Hears a Who by Dr. Seuss. I said remember when no one believed Horton when he said that the speck of dust had living creatures living in it...the girls nodded their head...then I said remember when the town mayor ran around to make sure everyone was yelling in order to save the town...they said yes...I said we need everyone to pray...it could take just one more person to add a prayer to help us and Payton. Even if it is to give us the strength to deal with the news on February. That is all we need. There is a lot happening in February with not only Payton but with other people we have come to know through this horrible xperience such as Anthony. Please continue your prayers for Payton and Anthony. We need them so much. We cannot thank you enough for all you do for our family. Please have a great day and a nice weekend. I hope to update on Sunday. We are having family come in for the weekend. Thank you again for your support. Each day has been a true blessing and we have had some great days. Patrick added new pictures as well today. See the above note for directions
It's gonna be a good day!
Holly and Patrick
You can know purchase the Seven Little Angel Fairies book online. There is a link to it on the main page of Payton’s website. Thanks again to Tracy and Callie for putting this together and the Little Bookworms independent store for supporting them. Please check out their website they do some much for the community. www.littlebookworms.net
On another note Holly took Payton to Dr Santos (dentist) awesome group here in Lakewood Ranch. They made her visit special for Payton. She has no cavities, her gums look great and her enamel looks great as well. This surprised them because most kids who have gone through chemo and radiation have dental issues. We took this as another blessing.
Hope all is well.
Patrick and Holly
Hello Everyone, Today is Sunday the 4th of Feb. Well, Payton got her power wheelchair on Thursday. At first she cried and didn't want anything to do with the chair. However, after a few minutes she took a liking to it and did awesome. She actually is a good driver. She hasn't bumped into any walls yet! I am sure she will now that I said that. However, she still likes us to take her other wheelchair when we go out. I think she needs to feel more confident with it. We had a pretty good weekend. On Friday, I took Sydney out of school to get her ears pierced (she was very sick for all the school officials). I normally would not let my kids skip school, but she needed mom and Sydney time. It was really nice. We spent the day doing girl things. Sydney was with her best friend Madison and they both got their ears pierced. Savanna got to have a friend (Dakota) sleep over for the weekend. So everyone was happy. I just wanted to have a kid’s weekend. Payton played with the girls and had a really good time (especially making food/treats for her American Girl doll). Payton is definitely our baker.
I am not doing so well which was expected. I have had constant headaches and my nerves are getting the best of me. However, after talking with my friend Nicole, I can and will not give up on hope and faith. Payton has come so far that miracles do happen. As I have said before, I am waiting for the day of writing those powerful words...cure, miracle, healing. Please continue to pray for our dear Payton. I am getting called for as I write this from the girls. It is getting harder to have a few minutes for me. Oh well! Please have a wonderful day and I will write as soon as I can. Please, please, please pray for Payton.
It’s gonna be a good day,
Love you all Holly and Patrick
If you have recently sent a quest book entry and it was not posted please resend it if you can. Our office in Pittsburgh just installed a new server and some may have been lost. Thanks Patrick
Thursday, February 08, 2007
Today is Thursday. Well yesterday...will be chalked up to one of the worst day of our lives. Payton's cancer has spread. We were told that we already had our miracle a few months ago by her making it past October. Well, to me that is not good enough. I was right...this one was very hard to take. We are watching Payton talk, play, and enjoy life and in one moment told sorry, there may not be much further we can do. Duke is reviewing her scans and will let us know what they want to do next. If anything, it would be a low dose of oral chemo. I am not being strong at all. I cannot stop crying and slept a few hours last night (if I was lucky). I just don't want to watch my child...go through pain...I had such big hopes of her being cancer free and us being on our way to Miami for spinal treatment. I am in grieving mode right now. Payton wanted to know why I was crying so much and I lied and told her that her tests came back and she is getting better. I don't want her to stop trying to get stronger and I want her time with us to be happy. Savanna and Sydney are pretty much a mess. So the next few days will be pulling my family in tighter and helping them be strong. I have to say I was pretty shocked at the results. Payton appears to be doing so well physically and mentally. I really felt we had our miracle. I want to thank you all for being such a support to us. We will really need it know more than ever. I hate to make this update short, but I have a hard time seeing through my tears. Please continue to pray...at this point it is all we have left to hold on to.
Harvest Methodist Church will be having a blood drive in Payton's Honor on March 18th from 8:30 to 12:30. It would help us a great deal for the support. Thank you ever so much.
All my love,
Holly and Patrick
Tuesday, February 13, 2007
Hello everyone. I will be doing the update today for Holly she just isn’t ready to get back on here. Holly and I wanted to thank Cold Stone Ice Cream for their support this past Saturday. Henry and Michelle, we are so very thankful to you both and your team that worked so hard. You made it fun for all the kids as well as Payton. She really had a good time. Thank you so much! Thanks to Florida Blood Services as well for having a bus at the event.
We also want to thank every one who has called, sent letters or wrote in Payton’s guestbook for their words of encouragement and support. It again truly means a lot.
We are getting by a day at a time and right now Payton is doing so well and being her typical Payton self. We will be trying to get away for some family time very soon. We want Payton to have as much fun as she can handle right now. I am still waiting to hear from Duke to decide what we can do next if anything. These will be some very hard decisions we have to make in the next few days. I really do not want to do any further treatment just for treatment sake without some answers to what the side effects will be and how she will tolerate it. We are not looking to make her sick and have to spend this time we have in the hospital. We are struggling with these decisions and are always asking ourselves are we making the right choices. No one should have to go through this.
Have a great day,
Love to all,
Patrick and Holly
Monday, February 19, 2007
Monday and I am sorry I have not been keeping up with the updates, but I needed some time to get myself back on track. We received confirmation on Friday with Dr. G at Duke regarding Payton’s MRI. He believes thee is a small abnormality on her occipital nerve and that the tumor in her pelvis grew. He said to wait another 6 – 8 weeks and get another MRI. Her counts although good just aren’t up high enough to give her any chemo anyway. So he hopes that in the next month in a half or so they might come up a lot more. He basically needs her platelets to come up on their own. We went to Wannado City in Ft Lauderdale on Friday and the kids had a blast. We are just trying to have as much fun with them as we can. We figured the girls have gone through a lot and we want to give the girls some major fun time.
We are trying some alternative methods for Payton as well. We are going to meet several docs to see what they would recommend for Payton. We are looking to boost her immune system. Patrick and I have been doing so much research into this with help from our dear friends Lisa N and Lisa S. I am not giving up on our daughter. I want to thank all you for being so supportive especially the last few weeks. I need to go, but please know that we are not giving up the fight and we hope all of you are with us. Keep up the prayers, God is listening and is helping her. I know the news was not what we expected, but we have always made better turns when bad news is given. Please fight with us and keep those prayers coming. It means a great deal to us that you all are standing strong behind us…I need your strength more that ever. It will be a good day….
All my love,
Holly and Patrick
Thursday, February 22, 2007
Today is Wednesday. Payton went to school today. She was so excited to see her friends. Last week we took her to school for her Valentines party. Well, she has been asking me every since to go back to school. Last Friday and Monday our schools were closed, so today was her day to go to school. She woke up early this morning and said "daddy is today the day I get to go to school"? She sat on the couch with her red purse (which she takes EVERYWHERE) and put her play makeup on and we had to paint her nails. On the way to school she said "I think all the kids are going to say Payton we missed you...we are so glad you are back"! Sure enough that’s about what happened.
She played in the sand box, went to Spanish class, centers, and had snacks (that was her highlight was snack time). She loved her day, it was a great day! Patrick and I were talking about what a strong child Payton is...she went to school and went to her class like she had been there the entire year. I had a harder time with her going to school than she did. She told me I was to stay in the library and wait until school was over for me to come get her. The older girls started piano today and are doing pretty well. Patrick and I are going around this week and looking into alternative doctors to boost her immune system. We will let you know what we come across. Patrick and I got remarried last Sunday at our church. Our church was having a special service for those couples that wanted to renew their wedding vows. We really needed to do this...we had a rough year and maybe an even tougher road ahead. We needed to strengthen our bond to get through this year. So, yes Patrick and I are doing pretty good. This weekend, Heather (the woman who did our slide show) will be doing another photo shoot for us. We will let you know how that goes as well. Well I am very tired. We don't sleep much as you know and if I can get a few hours in tonight that would be great. Thank you for your uplifting messages on Payton's guestbook entries. I will and have been taking each day and moment and try to breathe. I do enjoy the girls and soak in every small and large moment with them.
It's funny how a situation can make you look at things differently.
All for the good...too bad it takes a horrible disease to do that. So please soak in and enjoy your moments. I will let you all know what we find out this week. Please take care and have a wonderful day...it's gonna be a good day!
All my love
Holly and Patrick
February 25, 2007
Today is Sunday. Things have been busy around here. We found an alternative person to help us get Payton stronger. Saturday was rough trying to get her to take her vitamins. However, we are dealing with Payton and today she did GREAT! Yesterday we took pictures again with Heather from Catch a Star Photography. Payton was not in the mood for pictures, so I really hope we got some nice shots. Payton is now on an organic, gluten and sugar free diet. I have never been more stressed out! I spent a few hours looking over labels at Whole Foods grocery store today. It is not easy to eat healthy! But all I can do is the best I can. Savanna and Sydney are working pretty well with our new way of eating. No more candy in this house. Tomorrow Payton will try to go to school again. She has loved going to spend time with her friends. Just now she was making a card in which she wrote "I love you...love Payton". She taped the edges and said it was for a friend at school. Patrick made sure it was NOT for a BOY! She seems to have a few boyfriends lately. Savanna and Sydney are also doing well. I am so proud of them. We have been very fortunate to be busy with activities (piano, tennis, gymnastics, etc). Payton has her next MRI on March 28th at 9:00. I don't think I will ever get used to those @#$$% MRI days! However, I am and will keep as positive and hopeful as I can. So I pray it will be a great MRI day instead of a @#$$% day! Can you tell I am at the end of my rope with this disease. Well, I have to go cath Payton. Have a wonderful day! It's gonna be a good day!
All my love
Today is Saturday. This week went fairly ok with Payton on her new diet and mineral/vitamins protocol. She takes 25 pills right when she wakes up. As we have said since the beginning of this...Payton is amazing. Payton went to school this week and had a great time. She even got invited to a birthday party from twin little girls. It is a princess party and she has to dress up as one. She wants to be Cinderella. As I stated, Payton is dealing with her new diet. On Wednesday, her class was celebrating a birthday and was giving out cupcakes. I felt horrible to make her eat her gluten free, no sugar cookies but before I said anything Payton sat at the table and told her friends..."I can't eat that bad stuff...I have to eat stuff that’s good for me"...I couldn't believe it. What also helped was there was another little girl who is on a similar diet as Payton. She also brought a different snack. Payton was so excited that someone else was just like her. When we got home she said she wanted to write her new friend a letter and tell her how much she loves her. I really think Payton is helping me out lately. We also have been able to go to the park. She loves to play in the sand and swing on the swings. I usually take her down the slide (so I am getting quite a work out). Payton's next MRI is March 28th. Her CT scan is March 21st. I hope I mentally make it to the 28th. It has been so awesome to hear everyone continuing to pray for Payton. We are not giving up our hope and faith...and to hear all of you still staying strong with us is very comforting. Have a great day...thank you again for all your support. It means a great deal to our family.
It's gonna be a good day,
Holly and Patrick
Saturday, March 10, 2007
Today is Saturday. I am so sorry for the delay again for this update. We
have been extremely busy. Payton is doing great at taking her MANY MANY
vitamins. We are all doing much better adapting to our no Gluten and sugar
free lifestyle. I have changed at least 85% of her/our diet. She now goes in for 3 hour "therapy" treatments 3 times a week. She was unable to make it to school this week due to our schedule of drs/treatments. On Thursday, Payton went to All Children’s for her blood work and to her once a month medication through her port to prevent pneumonia. Her white count last week was 3.2 her platelet count was 87...this week her white count was 6.1 and her platelets...130!!!!! Her immune system is getting stronger. They had to run her blood twice to make sure it was correct...we couldn't believe the results. The Dr. told us we didn't need to come back next week for blood check. So we don't have to go back until March 21st. YEH!!!! In PT/OT Payton is getting physically stronger as well. Ms. Margaret and Ms. Sue are working very hard with her. She is rolling on her own in bed, which helps us not have to wake up as often to reposition her. Her CT scan is still scheduled for March 21st and her MRI is March 28th. I already told my mom that I should just admit myself to Bayfront Hospital (it is next to All Children's) on March 28th. I question how much my mind can take. Each MRI I seem to get worse. Please keep all your prayers towards Payton, but if you can say an extra one for us and the girls (my mind would appreciate it). I have had some people offer ideas/suggestions for our new diet. If anyone knows of good cookbooks or online sites to help me offer different things to Payton, I would appreciate it. I will try very hard to keep the updates occur more frequently. Thank you for your prayers. Oh, I wanted to let everyone know that our church, Harvest Methodist, is having a blood drive in Payton's honor on March 18th from 8:30 ro 12:30. Thank you all so much, in advance, for your support. As I hope I have gotten across over the last 11 months, blood products are needed not just for Payton but for so many people. I love getting my mail and seeing cards of "I gave blood today". Thank you, thank you, thank you for giving your time and blood!
That sounded odd! I wish you all a wonderful weekend and have a great
day...It's gonna be a good day!
I love you all
Holly and Patrick
Sunday, March 11, 2007
Everyone Heather did it again! She is an awesome photographer and was able to get some beautiful pictures of Payton and the whole family …..even though Payton was having a grumpy day!
Heather, thank you so much for your time and talent. We truly appreciate what you do.
You can see the new pictures by going to Payton’s site and clicking on the CatchaStar link. Once there the password is…sample1 then uncheck the box and hit submit. Enjoy.
Patrick and Holly
Tuesday, March 13, 2007
I added some new pictures my mom took of Payton on her site today. To view hit the last modified button until the most recent date is at the top. She looks pretty good!
Thursday, March 15, 2007
Today is Thursday. This week has been nonstop as usual. Payton is hanging in there with all of her treatments and therapies. Patrick and I were looking at Payton's pictures the other day (past and present) and I really don't know how we got through Duke (let alone the other months of chemo and illnesses). She was so sick...it breaks my heart thinking about those months and months of chemo and radiation she had to endure. I have to admit, I have a very hard time looking at her pictures of last year. Every day I have to talk myself out of feeling so guilty for putting her through that. You all have no idea what is feels like to sign the OK to administer treatments that about killed her. I know we had no choice, but I can't help thinking about that daily. Patrick and I continue to try to take each moment as it comes and enjoy. We have so much stress (of all kinds) that it takes so much effort to act and stay calm. We don't sleep much due to either helping Payton turn throughout the night or just waking in the middle of the night with our minds still going and going. Many, many days we feel we are on autopilot. I think my anxiety is building, it usually does a week before any testing is to occur (next Wednesday is the CT scan). So I don't think I will be doing very well for 2 more weeks (March 28th is MRI).
Patrick and I discussed that we will take two cars on those days, so when Payton is done with testing I will take her home. It about kills me to hang around and wait for results. This is why my husband is so terrific. We have a good team going. I take care of Payton and the kids, Patrick takes care of dealing with doctors. I definitely have the white coat syndrome (I have so much anxiety around ANY doctor). As usual, I beg for your continued prayers for the next few weeks. I am keeping my hope and faith strong and there will be a day of GREAT news. Thanks for hanging in there with us, we appreciate all of your support. Please have a wonderful day...It's gonna be a good day!
Payton moment: Today the girls were dressed in their green shamrock shirts with their painted green nails. Payton said she wanted to also paint her nails green for Father's day. I said "honey it's not Father's Day it’s...and before I could finish she said "I know it's Patrick's day...daddy’s' day".
So of course Patrick thinks she had a great idea and it should be HIS day.
Love you all
Holly and Patrick
Sunday, March 18, 2007
Today is Saturday. I was reading the updates to the girls and Savanna said she wanted to write an update. So here is my Savanna...I just wanted to say Hi and thank everyone for their donations for Payton! I wish I could hug you all and thank you in person, but that would be more than 50,000 people to thank, and visit. So the only way to thank you is by the updates. I really learned a lot from this whole thing going on like being brave and going with the flow and whatever comes our way, just deal with it and try to defeat it, or facing it. Maybe you all ready know but my sister has to take at least 60 pills a day, and when she takes them you don't even know she took them because she takes them so fast. You know before this happened I went on thinking that a cut and a splinter are really big deals but they’re not now, because for me and my sister Sydney to see what she goes through every day, and to look back and see how happy and healthy we were, and to think we were going to be having a perfect life when we get older well now I realized that no-one has a perfect life and bad things can happen to good people in the world like Payton. And at the age 10 to know what Chemo therapy is and radiation is, is really strange but I believe that my family and I will get through this as a family and deal with everything that will happen to us. Well I guess you want to know how Payton is doing, well she is really good .And she's been scaring me and my mom because one day we were at the park and my mom and I were pushing Payton on the swing and a minute later she said she had a major headack and wanted to go home immediately so when we arrived home she was laughing and smiling and we were getting ice- packs for her head and when we heard her we said `Do you really have a headack or were you disy from swinging or were you really sick?"`I was really disy"
Payton said, we were so scared all for nothing. WOW! If I really think about it we've had some pretty good times like the Payton walk, and actually we have spent more time together then we did befor.Well I have to go to see a movie [Bridge to Terabithya] well I hope you all are well and every night I pray to God and tell him that you all are very helpful by praying for my family and me. Well thank you and I hope to read your responses. Love Savanna wright!
P.S. I hope you all keep praying.
Friday, March 23, 2007
Today is Thursday. Yesterday Payton had her CT scan. It went well. The doctor compared scans (this one to the one in December). Oh what a difference. The one in December...you couldn't see much of her brain...all you saw was a big X. This scan showed her brain with small dark areas which are her ventricles. Her counts went down a bit 4.3 for white count and 94 for platelets. That should be expected since she received her monthly medication two weeks ago...I was told it depletes platelets. I am sorry it has taken me a while to do this update, but I have been going non- stop. This morning Payton didn't feel good. She complained of a headache and was sick to her stomach. However, after she rested for a while she sat up and was laughing and playing just as quickly as when her headache came on. I think she likes to torture me. Payton went to her therapy today and did a little showing off for Mimi. My mom finally came down from her trip to Pittsburgh (to see my dad) on Monday and we are getting back into the swing of things. She thinks she is not needed at times, but I quickly remind her that things are going smoothly because we have gotten a system going... and it is going well. My mom needs a huge vacation after this...she has been incredible! The girls received their report cards this week, and as a very proud parent I am bragging that they both got straight A's. I feel so lucky to have such great girls! I received some really good advice today. I was told to not focus on Payton's cancer and to focus on living. I think a lot of people were trying to tell me that same statement, but for some reason it really sunk in today. Many people have told me that Payton is a "crystal" child or a "rainbow" child...a teaching child. Even before this happened to my daughter, Patrick and I have felt Payton is an old soul. Again, for some reason I feel so honored to be blessed with such a spiritual soul. My friend Lisa was talking to me today and said I sounded so calm and at peace. I must say it is taking a lot of effort to give my fear away. I am not putting so much dread into this next MRI or disease for that matter. The MRI does not mean anything to me anymore. We are no longer going to do chemo or radiation. So what is the point of an MRI? I don't want to know what is tells me because it will make no difference in what we are doing for Payton. We are going to continue with her alternative treatments and enjoy our moments. Hopefully our moments will last our lifetime. If you think about it, do I really want to hear "oh, it has spread even more and she has ....to live”. I would be on a countdown every week. That is not living. So I will take Payton up on Wednesday the 28th for her MRI (because Patrick wants one done) and leave when it is over to take her home. My mom and Patrick will stay to hear the results. I do not want to know...to me it is not important anymore. So, I will assume Patrick will write the update for the outcome on Wednesday. Whatever the results, please don't share them with me. My main goal is to remain focused, strong, positive, full of hope and FAITH. That is what will get us through this. This still does not mean that we don't need the continued prayers. We need them more than ever. I also wanted to let you all know that what you do for us is always appreciated. As was seen in Savanna's update. She wanted to write an update...I was trying to put Payton in for a nap. Payton and I fell asleep. When I woke up, Savanna was still typing (one finger at a time...bless her). When I read her update, I was filled with tears. I never realized how much everyone has helped her and Sydney. All of your guestbook entries mean so much to our family...thank you for giving our daughter's support. Patrick and I are waiting for the day that we can give like we have received. My prayers go out to all of you and I hope you all don't stop the prayers for my children. I hope to get better at writing more frequently in the updates. Now that my mom is back I should be able to get some time in on the computer. Please have a wonderful day and "It's gonna be a good day".
All my love
Holly and Patrick
March 27th, 2007
Today is Tuesday. We have decided to cancel the MRI for tomorrow and reschedule it for next Thursday (Aril 5th) at 9:00am. We needed to do some
fun R and R things this week (the kids are on spring break). As I stated
before, the MRI has no importance to me. I am still going to continue with
her alternative treatments. Her MRI will be in Tampa and we wont hear the
news until Friday. I look at this as getting in an extra week of prayers!
Payton continues to be doing Ok. We are having a really good time the last few days...we have been outside everyday making fairy houses. The fairy house can only be made with nature, no man made products. It has been fun watching the girls be creative. I came down with shingles last Friday (I told you my nerves are shot) and I had mouth surgery the same day. I have stitches everywhere in my mouth. I can only eat soft things and drink room temp beverages (red wine)! I think if I just slept for a full week, I would feel so much better. Well, I will be fine. I can't complain one bit. I will let you know how our week went and thank you again for all of your support. You all are amazing people. Please have a great day. It's gonna be a good day.
Love you all,
Holly and Patrick
Sunday, April 01, 2007
Today is Sunday. We were away last week for spring break. We decided to take a trip last minute. The girls were all in need of some one on one time with mom and dad. We went to a beautiful cabin in North Georgia. We overlooked the mountains and watched the sunrise every morning. The girls (even Payton) played outside in the dirt all day long. If was so relaxing to get away and just enjoy the family. We will put pictures on the website of the girl’s fairy houses and of them getting very dirty!!!!! Payton took a bath every night without crying. Each night we built a fire outside in a screened-in porch with rocking chairs. We made smores for the kids and had wine for us. Patrick, my mom and I needed this trip. (I really needed to have time to recover from my shingles and surgery). We all needed a few days to escape our life...I really didn't want to come home. We were only supposed to be gone from Friday to Tuesday, but we all wanted to stay. That is why we extended our trip and cancelled the MRI. As I stated before, the MRI will be on Thursday April 5th. I hope I stay as brave as I have been talking lately. I think Payton is going to be a spokesperson for eating healthy. We were at a party the other night and a little boy gave her a piece of candy. She is not allowed any sugar. She put it into her mouth and quickly spit it out. She started to tell everyone that candy is not good for you and we should all eat better. She will even tell you what foods you should eat. She is something else. Payton and the girls are busy planning her 5th birthday which is May 7th. She is having a tea party and her sisters will be the servers. She also stated that the little girls must drink chi tea (that is Payton's favorite). I am sure I have stated before, Payton is a very big tea drinker. She always has to have a cup of tea first thing in the morning. We finally got her to like Green Chi tea. She said she would like to have a Barbie motor car. So Patrick and I will need to find someone who can change the foot pedals to hand controls. It is so great to see her not feel limited and dream. Thank you all so much for standing behind us with your support and prayers. Every day I fight my anxiety and fear. I hate the nights....my thoughts always get the best of me. HOWEVER, my thoughts keep going to my faith and hope, when I say that is all I have...I mean it. I love reading your guestbook entries...even though we are at a calm moment they are pulling our family through. Your encouragement is well needed. There was someone who sent us a gift card...how do we thank you. I don't know how Patrick and I will be able to repay or thank each of you for all of your generosity and kindness. The support and love you all give.........thank you from the bottom of my heart....thank you. We are all trying to get Payton better, what a team we are! Well, please have a wonderful Sunday. Enjoy the day! It's gonna be a good day!
All our love,
Holly and Patrick
Wednesday, April 4th
Today is Tuesday. We have had a busy week already. My brother came into town yesterday and the girls are having a lot of fun with him. On Monday, Payton went into my mom's hot tub (with her life vest) twice. She stayed in for more than 10 minutes each time. She finally got comfortable and started to "swim" without my brother holding on to her. She usually falls forward due to her lack of trunk control, however, she was able to keep herself afloat. On Saturday, we went to an Easter Egg hunt. I tried to put her in a nice dress, however when I held up the dress to get her approval, she firmly stated "mom don't you know I am a rocker girl"...that was the end of wearing a dress. I hope Patrick will put the picture on the web of her and Sydney with the Easter Bunny. Savanna was at a friend’s house and felt she was a bit too old to go on the egg hunt. However, there is another one this weekend and she insists on going! Payton had a great time. Oh how these moments are priceless. Sunday, we went to the beach for the first time since June/July (I can't remember the month) of last year. I can't believe how those months are such a blur. Payton loved playing on the beach. She built a sandcastle and helped the girls make a fort. We went late in the day so it wasn't so hot out. The last time we tried the beach, she only lasted for 5 minutes before we had to leave. Again this was priceless. I have been sent some wonderful inspiring books and articles. They all have the same message which is having strong faith. I have not one questioned why...there could never be an answer that would make me understand this disease (especially on a child). What I continue to do and hope I have with all of you is true faith in Payton's healing. I sat down and did a lot of thinking about how I pray and do I really believe she is going to get better. There was a moment during this terrible time when I was given the opportunity to see in a dream a situation dealing with Payton actually occur 3 months later. How can I not feel so blessed and have faith when I see her fighting and talking about the angels. I continue to see Payton (in my dreams) in short hair walking. Patrick does as well. I can look at that as our wishful thinking, but I do believe in my heart my daughter will pull through. I cannot have doubt just true faith in her healing. We all thank god for her healing and ask the angels to protect her. I do not want to come across pushing anything on any of you. I feel there is a difference in religion and being spiritual. We all have different religions, but we can all be spiritual...it has given me peace and hope during all of this. As I end this update I continue to ask for your continued prayers of true feeling for her healing. Thursday (MRI day) will be just a day for me. I will continue to treat Payton the way we have that last month. I don't know if I want to know the results. I need to stay completely focused, strong, hopeful and full of faith. So as I stated in a prior update, Patrick will be putting the updates on and will let you know the results, but whatever the outcome, please don't let it bring down your faith and hope...it is just a test. Can you tell that is what I keep playing in my head over and over? Anyway, I thank you again for you continued support and love for us and our little darlings. Please have a great day tomorrow...It's gonna be a good day.
All our love,
Holly and Patrick
Friday, April 6
Today is Good Friday! Well we did the MRI yesterday at the Tampa clinic. It was the first time for me that I didn't have a mental or physical break down. I even went and got a haircut afterwards. Payton's blood work didn't come back as good as I had wanted them, but they were still OK. Everyone at the clinic loved her. They commented on how talkative she is, how pleasant and what a sweet little girl (we all know that). The only issue
was her right eye became VERY red and slightly swollen from the anesthesia.
She slept most of the day and by the time she was to go to bed, she wasn't too tired. So we all (all the girls) had a cup of tea and watched the Disney channel in my bed. I felt like I won the lottery. I am taking a different path with Payton right now. I am trying very hard to reword my statements such as "I hope she gets better" to "she is better". I have been telling her she is all better and healed. Not that I am trying to lie to her, but I strongly feel that if her mind thinks she is healed, she will help herself get better. Does any of that make sense? We are to find out the results today of the MRI, however, I won't know. I don't know if Patrick will put the findings on the update, sorry I have to do that to you all. I really need to stay focused right now on being completely positive
and having no doubts. I need to stay faithful. I know it may sound like I have lost my mind (which is somewhat true) but this is how I need to fight to get Payton better. This weekend will be very busy (in a good way).
Patrick's 40th is on Monday. We are having a small get together for it tonight (nothing major). Tomorrow is an Easter Egg Hunt at our church and then Easter on Sunday. As I stated in my last update about Payton stating she is a rocker girl, I still do not have a clue on what that child will wear for Easter Sunday. I am hoping her girly sisters will help her see the "girly" light and get her to wear a dress. I know I have asked you all to pray for Payton over and over again, but please continue to pray for her (especially this Sunday which is such a special day). Please have a wonderful day and weekend. It's gonna be a good day.
All our love as always
Holly and Patrick
Sunday, April 8th
My week with Payton,
I hope everyone had a wonderful Easter! This is Payton's Uncle Beezer. I asked Holly if I could post an update to take it off of her plate and to give you a little perspective from my view. As you already know Payton has been doing really well the last couple of months. Her hair is coming in and she is finally getting bed head! On my drive down here I stopped off to buy an audio book to pass the time. I went to two places with no luck and finally I stopped and found an audio book that I was drawn to. It was a motivational, inspiring work that lit a fire in me. 'The Secret' was a women's search for the ultimate gift of inner peace, positive outlook and an overall blueprint for health, wealth and happiness.
I listened and listened and with each word I became more focused and determined to help give my sister strength and support. It's main focus was one thing...Positive Thinking! We all tend to doubt ourselves, each other and most importantly the hand life deals us. My dad always preached this to us and I finally understood. Yes at 31! It's never too late. We need to surround ourselves with positive people, positive energy and believe.
On to my week with Payton...This girl, rocker chick, little cookie, fearless, awe inspiring, almost 5 year old going on 30 has touched so many people. First off she skipped school on Monday to come see her crazy uncle. Well she wanted to go in the hot tub so off we went...laughing along she was having trouble keeping her but from floating up so we worked on this and she taught herself how to swim without the use of her legs and learned how to keep herself afloat. Well she did it and we took her into the big pool where she swam to mimi and back all by herself...Inspiration to say the least! Then the little sweetheart loves music but not kid's music all different kinds; INXS (as you all know), Elvis and I put in a Ray Charles CD while we were eating lunch. 'Uncle Beezer dance with me', So 'Night Time' is the Right Time was on (think of the cosby show when rudy was singing and Bill was lip syncing the part of Ray). I picked her up and we danced and danced and she loved it so. She also learned the words to the song and sang them in my ear. We then slow danced to Georgia and she put her head on my shoulder...I love her so much.
The next time we went swimming I went to the dollar store to pick up pool toys for the girls and I spent $30 on rubber ducks, rubber frogs, dinosaur eggs that grow, a bow and arrow, rafts, balls, just to name a few. We had a blast. Oh and she loves playing hide and seek. I also have to apologize to her we were playing with a super bouncy ball that is as big as a softball and bounces to at least 30-50 feet...I hit her in the head and she just shook it off and said she needed ice!
We made it through Thursday's MRI and man she is the bravest person I know. My mom, Holly, Pat and I took her in and she keeps us calm saying that wasn't bad (when they accessed her port) and it's gonna be ok. Then Friday we celebrated Pat's birthday with friends and It was so nice to see Pat and Holly having a good time dancing and just having fun! Payton gets her charisma, bravery and heart from these two. Boy are they great parents that are helping this child fight on while helping Savanna and Sydney grow into young women.
On to Saturday where after Pat had a rough night, a few too many cocktails. His friend Scott took us to his farm to shoot guns, (smart thing huh!)...Well it was myself, Matty my best friend, Tom Petti and his father. We're on this beautiful 60,000 acre farm and having a good old time and we look over and ask Scott if we can pick some fresh oranges off of his trees...'Sure thing' he said and we had the freshest oranges you will ever have...Great time...It was nice to see Pat have a good time...Thanks Scott it was great, next time wild boar hunting!
Finally Easter, we all went to church and Payton saw Pastor Steve and he came over...'Happy Easter Pastor Steve' was the first thing she said. She makes you drop your jaw every day... Our family had dinner and Matty came over. She was giving him high fives and screaming at me to play dolls with her. It was a truly blessed day.
Sorry this update was so long but I wanted to give you a look into the life of our Payton. We continue to pray, we must be positive and continue to fight. She has such an infectious smile and I try to get her to laugh often. Laughter can help in her battle and she needs to do it as much as possible.
Well that's it. I will see her when the Wright's are coming up to PA in a month. Thank you for all of your support, especially with Pat, Holly and my Mom and Dad...This has been very tough on all of them to keep our family strong and focused. I also wanted to thank Erik Rettger and his family. There was an article recently in the Murrysville Star where the Rettgers were named citizens of the year for they're charitable work...They have supported the Payton Wright Wellness fund and had her name and cause in the article.
All the Best,
April 11, 2007
Hello to everyone. Sorry for not updating the site as of late. I will do so soon. In the meantime please take a look at the essay below from a 13 year old boy who obviously adores Payton. He visits her often and they seem to have a very special bond. Payton touches so many in so many different ways and the below is one of them. Love to all, Patrick
Today I want to tell you about a person that means the world to me. She means so much to me that if I do not see her at least once every week I freak out. When she smiles, it is like seeing the sun after a rainy day. She has taught everyone who has heard her story to take none of your friends and family for granted because they might be gone the next day. This girl I love so much and would hate to see god take away such a beautiful loving angel. Her name is Payton Wright. She is 4 years of age and she has tumors on her spine and in her brain. When you are around her and you look into her eyes, you get a joy compared to nothing else. God please do not let her leave us this way Please! I love you Payton.
Brian or the Boy (as Payton call’s me)
Saturday, April 14, 2007
Hello Everyone, Today is Friday. We have had a very long week. I am so glad my brother put an update on earlier this week. Our holiday was wonderful. However, Payton had a very bad reaction to the anesthesia from her MRI. Her eyes were bloodshot and swollen. The entire weekend she was not feeling well and has had headaches all week. I am staying calm because with some natural remedies we are able to relieve her pain. We also contacted hospice. When Patrick told me he wanted them to assist us, I about freaked out. I actually couldn't breath. My thought was "how dare he bring hospice in...Payton is getting better...how could he not have faith and not be positive". Well, I needed to be educated regarding their services. What is great about the program is I don't have to go to the hospital ever. They will do her blood work, check in, take urine samples if need, etc. That is all I wanted...to not have to go back to the hospital. I met with four different women who were so nice, caring and yes very positive about Payton. Patrick and I have decided not to do any more MRI's as well. Again, what is the point. We are continuing with our alternative medicine. My brother gave me some CD's regarding positive energy/thinking etc. I always thought I was fairly positive, but after listening to these CD's I realized I needed to completely change my way of thinking/speaking. I will not have doubt regarding Payton's wellness. It doesn't matter what the MRI states, Payton is a fighter and she has ALL of US to help her recover. So many have said to me..."It is up to God...whatever God's will is towards Payton..." Well, I have to say that it is up to God regarding her healing, but that he does not want Payton or any of us to suffer. His will is for Payton to be healed. I am going to ask a favor of all of you regarding your prayers/thoughts of Payton. When you think of Payton or pray for her, do it with complete confidence that she WILL be well. I picture her everyday running around. Please don't think I am in denial...I know my daughter is very ill. But that does not mean that she can never get better... stranger things have happened. I think we are all used to going with what is black and white. Things in the gray are too scary. I am going to take a walk on the wild side and go with gray. Anyone what to join me? I have a feeling Patrick thinks that I have lost my mind. I do believe he is worried about me, but I really am not crazy...I just need to keep my hope/faith strong. I have been in fight mode since May 17th of 2006. Why should I stop now. These updates are very hard for me....there are no words that can truly express our life. Patrick and I are slaves to this disease. I never have a chance to have "down time". Not that I am even looking for it now...there will be a day I will get it back. But, if any of you have had a sick child that lasts for a few days, you know you can't do anything. This entire week, I have had to stay in our bed and lay with Payton while she recovers from her headaches. Patrick and I run to drop off urine samples, to going to appointments to getting her "special foods". I would not be doing anything else, but this. However, we are so numb and tired. I am not looking for sympathy, just needed encouragement to get us through our days. The next few months are critical and we are going into major fight/determination mode. Please keep us in your thoughts/prayers with strong beliefs. My daughter will be healed, she will be better and NO I am not in denial. Thank you ever so much for all you have done. I also wanted to mention that our church had a blood drive not to long ago and there were a large crowd that donated blood in Payton's honor. I am so excited of the turn outs on these blood drives. I know we have all helped SO many people. Be proud of yourselves. I am so proud of all of you. Thank you for giving blood/platelets...Thank you thank you thank you. Please stay strong..."IT'S GONNA BE A GOOD DAY"!
All my love
Sunday, April 15, 2007
Make sure you read the last few updates if you haven’t. They are pretty good and informative on what has been happening. I wanted to let everyone know about how the latest MRI came back. I have been putting it off because Holly does not know any details and only knows it must be bad because I haven’t said anything to her. She requested that she did not want to know and is trying to be as positive as she can be. She is doing a great job! Many of you who read these updates don’t know Holly. I will tell you and you can ask anyone who does, that she is the most wonderful mother and wife any child or husband could ever hope to have. Payton is so fortunate to have such a patient, caring, compassionate, determined, strong, and loving mother. You can’t imagine how hard this has been on us. We have been dealing with this disease for a year. I have tried to be very strong and as strong as I try to be I wonder sometimes if it is enough, I know I get my strength from Holly though. I look at her in amazement how she fights every day for Payton and me and the girls. She is truly an amazing mother to Payton and Savanna and Sydney as well.
Ok, back to the MRI. Well it wasn’t good news, but without a lot of the details….. The MRI showed progression and I will leave it at that for now. We are continuing on and everyday is a new day and she is really doing very well. As Anne recently wrote in Payton’s guestbook, you can still live tumors in your body. Her son is a testament to that. Payton hasn’t shown many symptoms so we continue to fight on and enjoy life every day. We are done with MRI’s and hospitals for now as Holly stated in her prior update. No more putting her through those things. Basically… because conventional medicine can’t really do much more for her as far as treatment goes. So why do them. Anyway we are continuing to be positive for her. As I am writing this I can hear her laughing…..Wow that is such a great sound!
Love to all,
Monday, April 23, 2007
Today is Sunday. I want to first thank you all for being such caring, supportive people. I appreciate the guestbook entries, especially now when I am trying so hard to keep my faith and hope strong. As I stated in the last update, Payton was having headaches. She continues to get them, but they are nothing like they were when her shunt was malfunctioning. It has been a pretty hard week though. Patrick and I have to work through our worries and sleep deprivation. It is very difficult to explain in words what we go through on a daily basis. I could try to sit here and write about our experiences, but it's not about us...it's about getting our little girl healthy. I am definitely not the same person I was a year ago. I have changed in some good and some not so good ways. I have gained from Payton a life lesion that unfortunately not all of us get to learn. I feel horrible that it took her to get so sick to teach me. I think I am still grieving for our life that has changed, our family that has changed, my daughter who has changed. I don't want to sound as if I don't thank god every moment for my children, having good days with Payton, Patrick, a life we work hard every day to be fun and somewhat normal. It's just so hard to look back before this happened and see how our whole family has changed. I guess that is what illness does...it affects every aspect of a person's life, not just their health. Last week we met with Payton's doctor from Tidewell Hospice. She was awesome. I really liked her. I will be calling the nurse in tomorrow to check her urine. I am positive she has another UTI. I don't think we ever got rid of the last one. Payton did have a great weekend. She had her friend Deklyn come over and play on Saturday. They even went swimming. I think she really likes the pool because she is so free. She can swim all over the place (in her swimming vest) and not have to depend on any of us. On Sunday we had a full morning. By the afternoon she was playing at her friends Jordan's house. Jordan was to come over and play, but she wouldn't stop crying to go over and see Jordan's room. I think she just wants to get out of this house and play with different toys. We had a party to go to in the evening, but it was cut short because she had another headache. I am keeping calm and continue to pray for her healing. Well I hope you all have a great Monday...a new day. Thank you for sticking by us, we really need your support. It's gonna be a good day.
All of my love
Holly and Patrick
There are new pictures from Easter and with uncle Bzer!
Wednesday, April 25, 2007
It is Tuesday night. Well, Payton does have a UTI. She has not had a headache today and told me she had a great day! She went for a vision screening at school (in order to get hospital homebound...she cannot go to kindergarten this fall because her immune system is still not strong enough). Anyway, she passed! yeh!!! This update will be short because it is very late and I am extremely tired. I read the updates tonight and I am so glad you all are staying positive not only for Payton but in your own life. All of us have a story...how you live your life is based on how you view your story. The other night, Savanna was feeling bad about herself. She felt she does everything wrong, etc...After we talked for a while I asked her why she wants the negative thought/energy to win? So, I told her to say 10 positive things about herself and her life. After the 4th and 5th, she began to laugh. I told her to try that when she feels so blue to let the positive stuff win instead. That is how we are dealing with Payton. It is not easy. I had a major melt down last week, but all I can do is stay the course. You all have been so incredible...I read this little statement in a book and I think it is so true "life's tragedies are made up not as much of the great failures as much as of the simple pleasures and kind gestures missed." Another statement (and then I am done I promise..."faith is all that dreamers need to see into the future." With this I will wish you all a good night/great day and It's gonna be a good day. Thank you all for being our strength.
All our love
Holly and Patrick
Thursday, May 3 2007
Today is Wednesday. We just got back from Pittsburgh last night. We left last Wednesday to go up to visit family. Payton did great throughout the trip. On the flight up to Pittsburgh, we had about 30 more minutes to go before we landed. At that point, she told me to tell the pilot to stop the plane. When I told her I couldn't stop the plane, she wanted to open the window and jump out! I must admit I had a vision of an emergency landing. But she made it to landing. She did not have any headaches throughout the trip. Every day was a great day for her and us. She played nonstop. It was so nice to be with our friends and family. Everyone was so great to come over to my mom’s house so we didn't have to take Payton all over the place. My grandmother is not doing well and is in hospice. She has not had any liquids/food for 7 days. I thought I would be going to a funeral, but she is such a fighter (I know where my Payton gets her fight and strength)! At one point she opened her eyes and told me to take care of my girls. Her first statement was "how is the baby" (everyone calls Payton the baby...however Payton makes it clear that she is a big girl)! My parents donated my grandmother’s car to the children's cancer assoc. I thought that was awesome! My dad and mom have taken such good care of my grandparents...and even during this difficult time they were thinking of helping others. Well, Monday is Payton's 5th birthday. We are busy planning for her tea party. I ordered tea for one (teapots with tea cups) for all Payton's friends. I also got build a bears that the girls can stuff and bring to the table to have their tea party. She is so excited for her birthday. I don't know who is more excited...us or her. The next few days are going to be crazy getting her party together. Being away for a week didn't help. I cannot wait to put her birthday pictures up on the website. Thank you all for your continued prayers....getting her well and walking. I hope you all have a wonderful day...It's gonna be a good day.
All my love
Holly and Patrick
Monday, May 07, 2007
Today is Sunday. Well, we had Payton's birthday party today. It was awesome. Payton had such a great time...I felt like it was Christmas just watching her and the girls. I came down with a major migraine during the party, but I just kept thinking Payton has gone through worse and stuck it out. I really need to thank all the moms for helping me. There were moments I didn't know if I was going to make it. Any of you who have had migraines know what I am talking about...they are not fun to get. So to all the MOMS...THANK YOU SO MUCH!!!! Anyway, we did a lot at her party. There were 6 of Payton's friends that came (I wanted to keep it small so that everyone would play and not run off). It really turned out great. They stuffed their own bears, made flower arrangements in tea cups (which was donated by Tidewell), had their nails and make up done by the older sisters, played pin the tea bag in the tea pot, decorated small cookies for their bear, ate tea sandwiches and drank tea, and a bunch more. They were busy the entire time. I really hope all the kids had fun. Payton was so cute, with each gift she would get so excited with what she received. I couldn’t believe how good she did without even having a nap. I didn't know what to expect today. Payton's left leg became slightly swollen over the weekend. Nothing to worry about, we had her checked out, but you never know what each day may bring. I have to mention how great Tidewell Hospice has been. We called to just have it noted about her leg and within 20 minutes we had a nurse at our door to check her. The doctor came this morning at 9:30 to examine her. Every single individual that has walked through my door from this agency has been extremely wonderful. I wish I had done this sooner. Payton loves everyone and they truly love her just as much. They all cannot do enough for her/us. For her birthday, they gave her the Samantha doll from American Girl and the tea set. Payton was so excited to receive these gifts. I really cannot thank them enough for their care for Payton and their thoughtfulness. They treat her like she is the only one on their caseload/as a family member. They also brought over a miniature tea set from an owner of an antique shop. Payton just loved it. Since we are on the tea subject, my mom's friend (Linda) from England called today and pretended to be the queen of England when she talked to Payton. Oh, how she was so excited. Later that day Payton told me I needed to fly her to the queen's castle so she can have tea! Thanks’ Linda!!! I was able to get Payton to wear a skirt today. Payton's response to our discussion of her wearing a dress at her party "mom, I have been drinking tea for a very long time now and every time I wear t-shirt and pants. Why now do I have to wear a dress just to drink tea?!!!!!" I didn't have an answer...how do you answer that! Well tomorrow is her official big 5th birthday. I feel so blessed and thankful. Every day we say how thankful we are and everyday is one step closer of her being healed. She really takes after my grandmother, who just passed away on Friday. My grandmother was a true fighter in all aspects of her life. My Payton is just like her...I am so proud to say that. I also must mention that my grandmother was a major tea drinker as well. I feel even more at peace knowing she is up there pulling for Payton. Well, I am very tired and need some sleep (if that is even a possibility). I hope you
all have a great day tomorrow. Instead of It's gonna be a good day...it will be a great day...it's my little ones birthday. Thank you for your continued support and prayers. Keep up the vision of her healed and walking!
I love you all,
Holly and Patrick
Just a side note….from dad. Last night Payton was sleeping between us as usual. She began to snore just like her dad. I looked over to see her and noticed Holly staring at her. We just looked at each other and said how happy and blessed we were to have her with us. This is one birthday we will not every forget!
Love to all,
Patrick and Holly
Tuesday, May 15, 2007
Today is Monday. Happy Mother's Day to all the MOM's! well, we were a bit crazy last week. Payton's real birthday last Monday was so wonderful not just for Payton but for us as well. We started the day a bit rough, but ended very happy. Payton had her friend Brooke come over to play for a few hours while I went to the dentist for emergency root canal. Yes I am still having major issues with my mouth. It was so awesome of Ms. Dina to drive hours and hours from North Carolina to Florida for Payton's birthday. Payton said that was her favorite present (to have Brooke come for her birthday). We went to her favorite restaurant Caraba's for dinner. Patrick and I got her the Ariel vanity table. She spent hours in front of the mirror doing her hair/makeup and her American Girl Doll’s hair. It was so cute to watch her play (for more than just a few minutes). We decided not to get her the Barbie car that drives. After looking at them we thought Payton would actually be too big for it. Her legs have grown. My sister and her kids (Casey, Ryan and Jessica) came in to visit for the weekend. As many of you know, Florida got hit with the Georgia smoke from all of their fires. It was not good to be outside, so we took all the kids to Brandon and went shopping. The girls went to build a bear and of course we hit a great tea shop. We celebrated all the kids’ birthdays that night. I got the idea from my sister in law Micheale. When we went to Pennsylvania we visited Patrick's Rodney and sister in law. She had a cake with all the kid’s names on it since we never get to be together for everyone’s birthdays. It was such a great idea...and of course the kids loved it. So we had one down here. I know Payton has been very happy this week. I think she feels her birthday lasts for a week not a day. Thank you to everyone who sent her birthday gifts and wishes. I can't tell you what it was like to put her birthday cake in front of her...I really can't. Well, today we went to another alternative doctor. The other one was increasing her pill intake to75 pills a day. Plus she has been waking up in the middle of the night vomiting. It was too much and I felt very uncomfortable. As I have been stating all along...go with your gut. We were referred to a doctor affiliated with Moffit Cancer Institute. Patrick and I feel good about going to him. We stopped her major pill intake on Friday and she didn't have any episodes of vomiting the entire weekend. I am trying to stay calm, but I am so frustrated with this whole process of treatments. No one has a clue on what to do...I am not putting all my apples in one basket... that is the one thing I learned through all this. My prayers begin with thank you for healing Payton and for her being able to walk then it goes to please tell me how to help her. Could you all add that to your prayers? I really need the advice. Anyway, today was good. Payton went to school today and played with her friends Sarah and Abby. Those girls are so cute. They really like being around Payton. Payton graduates from preschool this Wednesday. She will wear a cap and gown. I will make sure we get the pictures up on the web. Well, it is getting late. Please add that extra statement in your prayers for me...I not feeling so strong lately. Have a great day tomorrow. It's gonna be a good day...I know its coming.
Love you all,Holly
Thursday, May 17, 2007
Today is Wednesday. Payton graduated from pre-K tonight. I didn't think I would get so emotional, but I couldn't stop crying when she received her diploma. I think what got me the most was when people started to stand up and cheer when her name was called. Payton looked so cute in her cap and gown. However, half way through she took off her gown. You will see her in the pictures of her just having her cap on when she receives her diploma. Payton stated later that she was having hot flashes! I think she has been
hanging around too many adults lately! My little girl made it through this year. Tomorrow will be the one year mark of us finding out she had cancer. I still cannot believe that we are at the same point we were a year ago. My friends Sam and Jodi will be taking me out for "therapy" tonight. On Friday, Patrick and I were invited as guests of Dick Vitale to The Jimmy V Foundation Fundraiser. This organization is incredible. They have raised millions of dollars for cancer research. Every dollar they raise goes to
research for this dreaded disease. I am sure it will be a great event and raise not only money, but more awareness. Next week the girls will be out of school and we shall be planning a fun filled summer. At some point I would like to get up to Pittsburgh and spend some time with our friends and family. On our last trip, there were several people we were unable to visit. Everything of course will depend of Payton and her treatments. Payton has been feeling ok. She seems to get tired easily (nothing out of the ordinary). She continues to have very wet diapers and when we cath her we hardly get anything out. We are going to look into seeing a urologist. How great will that be if I don't have to cath her any more. It is really hard to examine her every moment. I feel that there is always something wrong. Tonight I was feeling her belly and one side seemed harder that the other. Now, I have been very good at not freaking out, but it is hard to not let your mind wander. I will be calling the doctor tomorrow to just ease my mind. I am exhausted mentally. It takes everything I have to not express my fear, worry, panic, etc. Thank you all for being so helpful to me. I really appreciate all of your kind words and prayers for our family. I am so glad to have the guestbook, it helps me stay strong. Thank you again. It's gonna be a good day.
Love to all
Holly and Patrick
May 18, 2007
Today is Friday. Well...we went for Payton's ultrasound yesterday due to her swollen belly. As many of you can guess as we already suspected, Payton's cancer has spread throughout her body. We were told her liver looked like Swiss cheese and she is down to one kidney working properly. Many of you already know how devastated we are right now. I cannot stop my tears and I am lucky if I can sleep. It is very difficult to be around my beautiful daughter who has so much light in her eyes and spirit and know how much @#$%% is going on inside her tiny body. But as Patrick keeps telling me over and over, we must be strong (especially around the girls). Savanna and Sydney know about the test. Savanna cried and told me that I better not be giving up...I told her I would never give up and she will see her parents FIGHT for their sister. Sydney, of course, is me and doesn't want to know details and goes on with her day (I don't see anything wrong with that...especially at her age). My mind goes from one thought to the other...burial to keeping faith to oh my GOD what am I going to do. My friend Lisa told me that this is rock bottom...there is nothing else I can do so give it all over to GOD...I actually felt a bit better because I can't carry this anymore...I physically can't do it. I think how ironic this all is. One year ago, May 17th 2006 we found out she has cancer now on May 17th
2007 we were told the worst of the worst. I am having a hard time finishing this update...from deep within our hearts; please continue your prayers for strength, wellness, and guidance. We are in uncharted waters and let me tell you its hell. We need all of you to please keep us in your hearts and prayers, we so desperately need them.
All our love,
Holly and Patrick
Monday, May 21, 2007
I just update Payton’s site with some new pictures. Some are from her graduation, our trip to my brother Rodney’s house, her birthday tea party and just around the house.
I wanted to say what a great time we had at Dick Vitale’s gala on Friday for the V Foundation. We are truly blessed to know the Vitale’s. We cannot thank their entire family enough for the support they have given us, but also for their tireless fight for cancer. We want to thank Coach K and his family as well. It was great to talk with them and they were so supportive. I am even a bigger Duke fan now! Holly and I can’t thank the V Foundation enough for their efforts in helping find a cure for cancer. We met with Nick Valvano and also spent time talking with Pam and John Strasser. I want to thank Pam and John for their support of our daughter/family. Holly and I truly appreciated the time they gave us… it really helped. I know I was a bit emotional and maybe not making much sense, but just know we are blessed to have met you both.
We sat with the Berg’s who are just tremendous people and have been there for us during this past year fighting for Payton. Tim donated money to the V Foundation on Friday in Payton’s honor and I couldn’t stop crying. Tim is an amazing person and what an awesome thing to do. Timmy Berg who is 14 seems to have a connection with Payton. He sat with Payton for an hour on Sunday morning just talking away. The adults had to leave them alone so they could have some time together.
I also wanted to say I met Bill Self the head coach for Kansas basketball. I can’t tell you how much I appreciated the time he spent with me and the words of encouragement. It really helped! Everyone we met with there was truly amazing and for such a great cause. I believe that every dollar earned, and it was over 1 million, will stay in the community for cancer research. If you ever are looking for a great charitable organization please consider the V Foundation.
We can’t thank everyone enough since hearing the news last week of Payton’s cancer spreading. We have had so many people reach out with their thoughts and prayers. Thank you to our family, friends and the community…you have given us such support…especially when we need it the most. The next few weeks will be very difficult for us. Thank you for your continued prayers during this time. I know that Holly will probably be putting another update on soon. I hope you enjoy the new pictures.
All our love
Patrick and Holly
There is a new guestbook section that allows for your entry to get on right away. Thanks to Nikki in my Pittsburgh office. I believe she is putting an archive section if anyone wants to read the old guestbook entries.
Thanks and love to all,
Thursday, May 24, 2007
It is Wednesday evening. I don't even know how to start. Two weeks ago my little sweetheart was celebrating her 5th birthday. Today she is not doing very well. The decline is fast and harsh. She just started to complain about her arm hurting and I am very fearful that this is a sign of her losing her upper body movements. Many of you have said how much we have strength and grace. I can't take this anymore. I am dying! My fear is not so much her death, it is what to come. These last few weeks have been so incredibly difficult for Patrick and me. I try everyday to stay positive and pray for her miracle...but when you see her to continue to have more and more symptoms...this is too much to take. I cannot put into words what we deal with on a daily basis and maybe that is good to spare everyone from this horrible disease. However, I want everyone to know that when you see a picture or story of a person with cancer...I will tell you it is down right ugly and horrific/terrifying. It is fear to it's max. Our family has experienced what hell is, trust me you don't want any part of it. When this is all said and done, please help me fight this disease for all children. Our babies should not experience this. All of your prayers and support is needed so much right now. As you can tell I am having a very
difficult moment. My faith is the only thing that is keeping me a float right now. Please don't give up on your prayers. I will keep you all up to date as best as I can in the next few days. I need to go to my closet now.
There will be a good day...I pray it is sooner than later.
Saturday, May 26, 2007
Today is Saturday. I can't sleep and I believe it is 3:30 am. Everyday seems to get a little more difficult and harder for all of us (including Payton). She is not eating. Don't get me wrong, she wants to but she feels full all the time. We are working very closely with Hospice and trying to keep her as comfortable as possible. I need to stress this again, thank goodness for Tidewell. Everyone has been so incredible. As I mentioned in my last update, we are in uncharted waters. I feel that Tidewell has been our captain to get us through this difficult time. Yesterday, Patrick and I started visiting cemeteries. This has to be the most difficult moment of my life. In the next few days, Patrick and I have many decisions and ones parents should not have to make. I have to tell you the guestbook entries are absolutely wonderful and very much needed during this time. Someone stated they didn't know how we do it. I think we are at so much peace with what is in store for our little girl because for a year we have watched her deal with so much. I don't want my baby to die, but I don't want her to suffer anymore. This is not living. This is not who my Payton is. This is not what a 5 year old child should have to endure. I know that if/when she passes; my little angel will be fine. She will be running, jumping, laughing again...she will be at peace. I hope all of you hold on to your faith. It really is the only thing we all have. It has gotten me to this point. Yes I scream and cry and want a miracle so badly, who wouldn't. We need to take what Payton has been teaching us. Don't forget the lessons and I feel positive things can come from this. I don't know what path Patrick and I are on, but I will tell you we are on a mission to help others. We have signed up on the cancer fighting army. Someone said at the Dick Vitale Gala..."It will be great when a person walks into his/her doctor’s office and when is told they have cancer in the next breath are told and here is how we are going to cure it." We may have a long journey ahead, but we need to start somewhere to make a difference. Please continue to pray for our family. We need the strength. I also don't want anyone to feel that all the prayers were done for nothing. We spent the last 6 months really enjoying our family. We may even get a miracle...but if it goes in a different direction...faith and hope is all we have and need to always sustain us. I should try to get some sleep, but before I log off I also wanted to state that both Savanna and Sydney had their last day of school on Thursday. They both continued to get straight A's even through all of this. I am so very proud of my children. I don’t really care about grades, it is the holding it together part I admire about my girls. They will need extra strength during this. Thank you all for helping the older ones through this as well. May you all have a good weekend. I pray we do as well.
It's gonna be a good day,
All my love
Holly and Patrick
Tuesday, May 29, 2007
I am having a very difficult time writing this update. It is 4:20 AM on Tuesday. Last night we had some friends and family and several of the Tidewell Hospice team here at the house. Payton is very close to being with God. I couldn’t stop crying last night and am so numb right now. I have tried to stay strong for my family, but last night was very tough. I really don’t even know what to say. I wanted to thank everyone for their thoughts and prayers for Payton. These last few days have been especially hard for Holly and I and I know the next few will be as well.
If Holly can’t give an update online as to what is happening I am sure Mimi will.
Love to you all,
Patrick and Holly
Wednesday, May 30, 2007
Today is Wednesday. I am so sad to have to tell you that our baby girl lost her battle with cancer yesterday...Tuesday the 29th at 2:20pm. She was at home with all of us in our bed when she peacefully passed. Patrick, my mom and I were holding her as she passed away. I have to tell you peace came over me. There is no more worry, pain, hospitalizations. My daughter is free. On Monday she lost her sight. We just kept her sedated so she didn't quite understand what was happening. I have to tell you all that we could not have done with without Tidewell Hospice. Oh my, I can't tell you how absolutely wonderful and fantastic the entire team was with our Payton and family. Kim our nurse...Kim I will always be forever grateful for you. You were at our side making our Payton so comfortable. You are such a caring person. With just knowing you a short time, you showed so much love for Payton and our family...you show so much love for your job. I don't know how you do it. We all need to understand what you do day in and day out. You have a tough job and you do it with such care and grace. Tanya was our child specialist. She not only stayed to help our girls cope, but she helped our friends children as well. Tanya was amazing. The girls are sitting next to me right now helping me write this. Tanya, Savanna wants me to tell you she loves you so much. Sydney wants to me tell you "thank you for taking us to the baseball game a few weeks ago, I had lots of fun...thanks for talking to me and Savanna-it helped us so much". Betsy the social worker, Susan the nurse, and Dr. Angston (I hope I spelled that correctly) we love you all. You all helped us with Payton and our family. I will cherish you all. It was unfortunate that I had to experience what hospice is all about... we could not have done this without them. It was such a blessing that we were able to keep our baby home to die in our arms peacefully. We will support Tidewell and their programs during our fundraisers. If any of you get a chance to attend one of their fundraisers or to donate to the hospice program, it is a wonderful program. We also wanted to thank so many of you who came to our home to give your support. As I have said from the beginning, that support is what kept us going and will be what gets us through this difficult time. I told Patrick that during the last few days before Payton's death, I wanted to remember every moment of her suffering so that when she died I would remember how important peace was for her and for us. My heart feels so heavy. We did receive our miracle...it may not have been what I and all of us wanted...her to stay here with us completely healed...our miracle was that she is now free of pain and walking...she is in heaven the most wonderful place to be. I hope we are all so lucky. I was told last week of worst cast best case of things that could happen to Payton. It is all too painful to write, but let me tell you she was spared. She died very peacefully. Thank god for that. Our prayers were answered for that. She actually had a smile on her face...we all felt that she was telling us she is fine and feels great. Savanna and Sydney are doing as best they can...it's a scary time for them now. However, when Patrick and I told them their sister had just passed, they ran into our bedroom and laid right beside her. Sydney just kept kissing her head...the love they had and have for their sister melts my heart. We will all be Ok, but there is such a loss/void in our family and heart. I hope you all continue to keep strong and hold your faith. I have no anger towards anything but cancer. God helped us through this process and will continue to help us for the rest of our lives. He has is beautiful angel at his side and she will be with us for eternity. Yesterday we had a good day...because she is no long suffering she is free.
Someone wrote this in her guestbook and it made us all feel so much better…
“We have lost Payton, but we have gained many new crusaders in the fight against childhood cancer.
Payton was a treasure whose spirit and resiliency will never be forgotten. She might have passed on, but she will never die.”
I love you all
Holly and Patrick
On another note, we will have her service at Harvest United Methodist Church on Friday the 1st form 5-7pm and on Saturday service at 10:00 AM with lunch to follow.
If anyone wants to help with the lunch, there will be a contact person at Harvest. I will get that name to you all.
Friday, June 01, 2007
Today is Friday. I don't even know where to begin this update. I first want to extend a big thank you to all for the most incredible words of comfort during this difficult time for our family. However, I feel I must say some comforting words to all of you, because we feel Payton became everyone’s child. A few days before Payton's death, I sat and watched her lay in our bed very uncomfortable. I remember saying to myself that I wanted those images to stick like super glue in my mind forever, because when she would pass I would understand the importance of peace. When Payton died and a few minutes after I was yelling how much I love her (I wanted her to hear my words as she was leaving for heaven), peace quickly came over me. I cannot explain it, I feel Payton took all of our worry, fear and heartache with her...I feel she is now taking care of Patrick and I. As I have said before, we were told of horrible/painful situations that could occur to Payton. We were so blessed to not have that happen and she died peacefully. I just want to all to know that...she died in such peace. Yesterday, we went to the funeral home for just family. I think that was harder than viewing her at home. It's funny, I spent the last year holding it together in front of Payton, that in the funeral home, I had a hard time crying. I don't when I am in the shower or my closet, but other times I can't. I told my sister that I need to reprogram my emotions again. I have put on the strength in front of her for so long, I can't lose it when I am with her. I know when this week is over, I will have some very good cries...I will have them most likely for a life time. We again promised Payton as we left last night, that we will keep up the fight in her name to help children. We told her we need her guidance and help to achieve a large goal we are making for ourselves. So know that Payton will continue to be on our team fighting childhood cancer...I know she will be our biggest supporter. I again thank you all for such wonderful words and support. I also wanted to thank all my friends and family who are working so hard to help put her "Celebration of Life" service together in such a way that tributes such a wonderful human being. Our little girl was and is an amazing child...someone asked me to describe her in three words... I said STRENGTH, FAITH, AND HUMOR. You cannot go wrong if you are able to have those three. Our love to all and thank you for your guestbook entries. We will continue to write updates to let you all know how we are doing and what we are doing with raising awareness and funds for cancer.
Have a great day...It's gonna be a good day
Love to all
Holly and Patrick
Holly and I said to each other we wish we could see a sign that Payton was ok. There have been so many. How about all this rain bringing the frogs out? If you were out last night or this morning did you see all the frogs! She is doing just fine. I love you baby girl.
Monday, June 04, 2007
Today is Monday. Patrick, Savanna, Sydney and I got through the weekend. It has been very difficult and every time I enter my closet, tears roll down. I know that will happen for awhile. On Friday we had almost 800 people come to the church to give us support...you all are wonderful. We displayed Payton's favorite things such as, books, drawings, clothing, stuffed animals or should I say frogs, blankets and other memorable items. It really looked beautiful. I wanted so much for the church to look and feel of Payton...I think we accomplished that this weekend. I don't know what to say about the funeral service. I feel it was a wonderful tribute to our daughter. My father, brother, sister, our dear family friend Jack, Patrick and myself stood up and said some amazing things regarding Payton. There were some difficult moments during the service, especially when I had to return a cross necklace that Pastor Steve had given (last Aug 2006) to Payton to wear when she was scared. That necklace had a great deal of meaning to me...it was all about Payton. Payton always talked about wanting to return it when she was healed...now she is. Pastor Steve did an incredible job at the service. One of his speeches involved "8 Lessons Payton Taught Us". If you can, print them out and put them on your refrigerator. Here they are:
1. It's always a good time for tea.
2. Life is much more fun when you live out loud.
3. Every princess needs a frog or two.
4. Honesty really is the best policy.
5. Calling someone "stupidhead" sounds much nicer if you're smiling when you say it.
6. Be thankful for every minute you have.
7. One small life can make huge ripples.
8. Always, always, always keep the faith.
Also during the service, Dan Whissell wrote, sang and dedicated a song for Payton. Oh let me tell you there was not a dry eye in the room. It was the most wonderful song I have ever heard. So what Patrick and I decided to do was raise money from this song to help build a new nursery for the church...Payton's Wing. We will have this available within the next few weeks. We are all just getting through this a day at a time. The girls are sleeping with us right now...I think I need them more than they need me. I also wanted to thank all our friends, members of our church and the community for helping us make Payton's funeral special for Payton. When we released the doves, I could vision Payton happy and free (that is a thought that is much better than what we witnessed a few day before). I promise we will keep up our updates and continue our fight for childhood cancer. Oh, before I sign off...a Payton moment. Patrick and I were at the viewing of
Payton on Thursday. As I was leaving I said to her "Payton you know I don't like squirrels or frogs that much (due to certain instances) but if you could put ONE in my path just to let me know you are ok and happy I would appreciate it"...well Friday on our way home from the memorial service at the church there were hundreds of frogs jumping all over the street. My sister who was driving was terrified she was going to hit one. I think she is doing very well.
Love to all
Wednesday, June 06, 2007
Today is Wednesday. Well, it has been a week since our little angel passed away. Each day it seems to get harder and harder for us. We just miss her...we miss her so much. Mornings are the toughest for me. She would always wake up at 6:30am and say "good morning mommy...what can I have to eat"? We have been on "go" mode for so long and all of a sudden it just stops. I have spent the last year caring for Payton and I really don't know what to do with myself now. I feel bad for Savanna and Sydney, because I am all over them (in a good way). I have to make sure I don't smother them. The girls have continued to sleep with us at night. Sydney said "sorry mom, but I think I need to sleep with you for awhile"....of course I don't mind...I need my girls so much right now. Patrick said we need to buy a super king size bed. We just received from Dan the song he wrote for Payton. I hope to have it available soon. I can't wait for you all to hear it...it is so incredible. Hospice continues to give our family support.
Child life was here yesterday and we all made shirts that said "Cancer Sucks". There is no better statement. The social worker will be here today and will introduce us to another person who will help us through this grieving period. We could not have done this without hospice...what a wonderful organization...what wonderful people. Pastors Catherine and Steve have been here every day as well. The support we are getting...we need it. My strength is losing speed, I don't have much anymore. I used it up last week to get through the days. I loved my little girl so much...it is so hard to be without her. We are trying to reconnect with the Savanna and Sydney. Those two little angels are helping us...if they only knew how much I lean on them. Thank you again for all of your prayers and support. I know Payton is doing well and is happy...it has been a good day for her. That is all I wanted for my daughter...to have good days.
All my love
Holly and Patrick
Wednesday, June 13, 2007
Hello everyone. We are trying to get some time together just the four of us. We thought it might be good for the girls, but in reality it has been very tough. We just can't stop thinking about Payton, crying and wishing she was still here with us. Holly is having a hard time and really trying to keep it together for Savanna and Sydney. They both are doing pretty well, but I think they are our strength right now. Holly and I will be in touch next week with an update on how things are going and possibly pictures that Heather at Catch A Star Photography has put together from the memorial service. I am sure they are wonderful, but we want to have a chance to look at them first. Holly will be on with an update soon. Thanks and love to all.
Patrick and Holly.
Today is Sunday. This week has been very difficult for all of us. It is so hard to get out of bed every morning. We want so much to hear the words "Good morning mommy/daddy...what can I have to eat?" I know I may have said this before, but we have been on such a schedule with Payton and taking care of her around the clock. Then all of a sudden it just stops...I feel I don't know what to do. We are going to take this week and spend major quality time with the girls. The girls are doing ok. They continue to sleep with us and I think we all need that right now. We brought Payton's ashes home on Thursday. I am so glad of our decision. It is actually comforting to go into her room and see her angel sitting on her shelf. She has her hospital puppy sitting with her. We bought her her hospital puppy when we first went to All Childrens for basic tests. After her bone scan, Patrick took her to the gift shop and she picked out the puppy. That dog has always been with her ever since. Every time she had to go to the hospital, have tests done, or different doctor visits, her puppy went. We will be turning her room into a play room. I felt it only appropriate for children to go in and play...that was who Payton was...a playful child. We don't have any problems getting rid of her bed...she never slept in it. Now if it was my bed...I couldn't, our bed was Payton's bed. It is so awesome to
hear all of your guestbook entries. Not only for the comforting words but for all of your frog sightings. I do believe she is still with us to help us cope and let us know she is doing well. The song that Dan wrote for her (that we will hopefully get out to you soon) says it all. She is playing, jumping and happy. For the first time in a year, Payton is feeling great. That is all I wanted for my daughter. Selfishly I would have wanted her here with us, but my main goal was for her to be completely healed (that included walking). As I stated before, we did receive our miracle for her. I cry more everyday...I just miss her so much. Patrick and I wake up in the morning and just walk around like zombies. We will look at each other and say the same words....I just miss her. We tell her and the girls all day long how much we love them all. I don't think you could ever tell someone too much how much you love them. I remember being told when all of my girls were babies, that I shouldn't hold them too much because you will spoil them...well, I never listened and all my girls were attached to my hip. I am so glad that I held my girls all the time, for as we all have witnessed you never know what will happen at any minute. Our hearts are so heavy and there isn't anything worse than losing a child. However, we would do an injustice to Payton if we sat back and let life go by. We need to honor Payton and continue to keep faith and fight for children. We promised her and we promised eachother we would not give up. We are taking her drive, spirit and fight to battle childhood cancer. Thank you to all who have said they are our crusaiders...we need to build our army. We are looking at our Payton's Party weekend fundraiser ( Fri Golf and Saturday walk) in September. I will confirm dates within the next few weeks. Thank you so much for helping us during this time. The dinners, cards, donations to Hospice/V Foundation/Harvest Methodist Church mean so much.
The above was written last Sunday. We went away for a week to regroup as a family. Every day I cried. Patrick and I seemed to walk around as zombies.
Our trip was nice, but it took a lot of effort to show enjoyment. It was so hard to walk back into the house today. We all went into Payton's room and had another good cry. I really don't know how we are going to get through this..,I really don't. I know today is Father's Day...Payton gave Patrick a hand painted card and rock the Wednesday before she passed for Father's day.
Oh how he is cherishing those items. We are trying to take one day at a
time. Right now my head feels like I am in a fog.
Happy Father's Day,
Holly and Patrick
Also you can check out the pictures that Heather from CatchAStar photography took of Payton’s service. Go to Payton’s site and hit the CatchAStar link. The password is paytonmemorial
Heather, you did an amazing job once again! Thank you so much for what you have done and do. We are so blessed to have met you. I hope you have some idea of how much this has meant to our family. Thank you, thank you.
Patrick and Holly
Tuesday, June 19, 2007
Hello all. Sunday was a tough day (father’s day) for me. Holly handed me a picture that Payton had drawn for me for her Father’s Day present. Needless to say that was all it took to make dad cry again. Well it really doesn’t take much at all for that to happen. Holly and I are doing ok trying to get the house back in order, going through paper work and bills, and everyday stuff. I suppose someday things will get better, but for now we are pretty consumed with feeling sad. We have so much support from family and friends that I just don’t know how people get through this without it. Our community, Lakewood Ranch just called and wanted to plant a tree in Payton’s name with a plaque at our local park. What a great idea and we thank them from the bottom of our hearts. Thank you all so much, we mean everyone.
I wanted to let you all know that Holly and I are truly committed to continuing our fight to raise awareness and money for cancer research and families. Many of you have told us you are on board and ask us “what can we do”? Well, in the next couple of weeks Holly and I will be figuring out what we will be doing actively to promote awareness. There are several events already in progress. There is the 2nd annual Payton Wright golf outing in Pittsburgh on Aug 20th you can contact email@example.com (412.841.5197) or firstname.lastname@example.org (412-380-7500 ext 102) to golf, volunteer, donate, or be a sponsor. You can also request a brochure from them as well.
There is also the 2nd annual Payton golf outing at the Lakewood Ranch Country Club September 21st in Sarasota, FL. You can contact Tony Noweski at email@example.com to golf, volunteer, donate, or be a sponsor. Both of these outings fill up pretty fast, so if you want to golf, get to the people running the outings early. In Sarasota I think there is going to be another fun walk for Payton as well. It will be on the 22nd of September. I will get back to you with contact information on that event. We have not yet decided where exactly the funds for these events will go yet and will be having a meeting next week to decide.
I received a call from Dick Vitale the other day letting me know about the 1 million dollar Pediatric Cancer Research Grant in Payton’s name he is working so diligently on through the V Foundation. There have been many who have already donated to the grant from small amounts to many thousands of dollars, including Dick himself. We can’t thank him enough and we are so honored that he is doing this in Payton’s name. There just isn’t enough money for research out there for kids. The V Foundation www.jimmv.org is the organization that is sponsoring the grant for Payton and we can’t thank them enough as well. To learn more about the grant go to www.dickvitaleonline.com. On the front page in the center you will see a picture of Payton and a message from Dick about what he and the V Foundation are doing in her name. You can donate to the address listed on his site. Please write checks to the V Foundation and in the memo just put Payton Wright grant or something to that effect. Here is the address to send checks. Tandem Enterprises, 7810 Mathern Court, Bradenton, Fl 34202
I am not sure when he is presenting the check, but I believe it is at next year’s Dick Vitale Gala . That will be a good day!
Dick Vitale and his entire family are as I have said many times, true champions in the battle to win the fight against cancer. I can’t thank them enough for what they have done for my family and am truly blessed to know them.
We are also blessed to have so many friends and family that have supported us, Payton and her fight for cancer awareness. Holly and I are going to be continuing on Payton’s fight and hope all you will follow with us along this journey. Payton has changed my life and I know many of you as well. I hope it will make you feel better about life and how something good can come out of such a terrible loss of life. One of my good friends said she finds herself every day telling someone new about Payton’s story. And she is excited to do so. I feel the same way. Pass it along to your friends and family and help us all win this battle!
Payton… mommy and daddy will make you proud up there in Heaven looking down on us. We love you and miss you so much. Love mom and dad.
Love to all you,
Patrick and Holly
Today is Wednesday. Well, the girls have started their camp this week. They are gone from 9-2. It is very hard to be in such a quiet house. I make sure that after camp the girls have friends over. It is nice to hear noise and kids playing. It has been a long time since we had a house full of children. Not that Payton didn't want kids over, but she wanted the girls all to herself. Every moment, Patrick and I talk about Payton's statements/comments. Sometimes we laugh but mostly we cry. I feel so physically drained. My heart actually hurts. All we think about is Payton's last year. It is almost impossible for me to think about Payton before she became ill. I think I spent a great deal of time at the beginning of Payton's illness grieving for the loss of pre-cancer Payton, now I am grieving all over again for the other Payton. She never was out of my sight...I knew every inch of her...she was all I was about for the last year. It is so hard for me to just stop and be. Pastor Steve said to me today that I need to make time to just relax and take time for me and Patrick...I know he is right, but I really don't know how. I think I needed Payton more than she needed me. Patrick said today that it is hard to look
in our back seat and not see Payton in her car seat. I told him that the Saturday before she died I took her for a drive. As you all know she was not feeling good at all but insisted that she get out of the house. As I had done for over a year, I complied. Whatever Payton wanted to do I did. Anyway, I remember driving around town in major tears and knowing this was her last car ride. Do you have any idea how hard that was...looking back at her in her seat and know...this is it. I have to be honest...I don't know how I am going to get through this. I know time will help, but I just want my daughter. I want to hug and kiss her just one more time. I kiss my girls so much now...you can never tell your loved ones you love them too much. Tell them all day. Kiss your kids even when they yell at you. I would do anything to have one more moment back with her. This is why Patrick and I will be fighting for children with cancer...I am tell you this is hell and a nightmare. I don't want any of you to go through this. Please join us in our crusade. Please sign up to be one of Payton's Crusaders.
We need to help and all of us together can make a difference. Just by coming to Payton's fundraisers, the money we raise, the blood donated, it all helps. You all have input in beating this disease. We cannot do this without you all.
YOU CAN MAKE A DIFFERENCE AND CHANGE THE OUTCOME OF PEDIATRIC CANCER.
They are doing it with breast cancer...let’s all try to do that for our children, grandchildren, nieces, and nephews. Below some info you all might think interesting regarding Pediatric cancer...
Children with cancer continue to be treated primarily with drugs that were developed 20-30 years ago. Scientifically, researchers have reached an era where new types of `smart drug's can be developed to treat cancer at a genetic level. These new types of cancer treatments have started to be developed for adult cancers and have showed great promise for cure. Children with cancer need these types of new drugs to give them Hope for a complete cure.
Current debates in both the House and Senate could eliminate such future development of targeted drugs for children with cancer and other rare diseases. In order to protect biotech development of such essential biologic products, Candlelighters is encouraging families, friends, and co-workers to sign the following petition located at: www.candlelighters.org/petition.stm
A Petition to Congress to Preserve Innovation and Support H.R. 1956, the "Patient Protection and Innovative Biologic Medicines Act of 2007
Because the survival rate of childhood cancer has not changed in the last decade.
Because treatment for children with cancer has not changed significantly in recent years and we are eagerly awaiting a major breakthrough.
Because current toxic therapies are not a solution for children with cancer as they cause lifelong health problems including second cancers.
Because biologic products are among the most promising and effective medicines for the treatment of serious and life-threatening diseases, like childhood cancer.
Because it is vital that we spur innovation for pharmaceutical companies to invest in the development of these life-saving drugs.
As supporters of the development of new targeted therapies for children and adolescents with cancer, we petition Congress to support H.R. 1956, the "Patient Protection and Innovative Biologic Medicines Act of 2007;" legislation that creates a pathway for "follow-on" biologics but establishes an appropriate balance between reducing cost, ensuring safety and providing incentives for innovation.
Please forward to other lists, to friends, families, and colleagues and ask them to sign the petition as well!
Candlelighters Childhood Cancer Foundation
Thank you for taking the time to read and hopefully sign the petition. I have a "Payton moment". Today I took the girls to the mall. They have a father/daughter dance coming up. Anyway, the girls are into "Webkins" (they are stuffed animals that have computer codes attached to them. You can go on the webkin sight, put in the code and the animal you purchased comes on the screen. It tells you a little bit about your stuffed animal and then you can play games on the computer). Anyway, the girls were asking to have one. They already have enough. I kept saying no and finally Savanna said please can I just look to see what they have in the store. I told her "fine, but you are not getting one". Well, the stores also keep the webkins behind the counter because people actually steal them or purchase all of them to resell them. So the stores are only letting people buy a certain amount. Anyway, I walked up to the counter and I asked if they had any webkins...the women said yes, but I am sorry all we have are FROGS. So I bought two..........I am a mother what can I say. Well, we get home and Savanna pulls up her frog on the computer. It gives a little paragraph about the frog and then at the end it says "If it was my birthday I would eat pizza and would want a porcelin tea set"! I never smiled so much...Payton is still with us. You all have a good night.
Sunday, June 24, 2007
Today is Sunday. Well we made it through another week. It is hard to believe that it will be a month on Tuesday that our dear Payton passed. Last night we went to her favorite restaurant (Carabbas). It was so hard to tell them we are a party of four. I just wanted to hear her ask for the bread (she loved their bread). We had our moment of tears. The girls are doing ok. They are still in camp and love it. I have spent the week trying to get somewhat organized. I have major paperwork all over the place. It's been a year since I have been able to go through all the stuff.
I would like to address comments regarding the Payton Wellness Fund and what we plan to do this year. We have not been able to become a Foundation because...when you are a foundation you are unable to have any monies go towards your family. As many of you know, this has been a difficult year. Families that have children with terminal illnesses are unable to work. Payton was 24/7 care. She underwent the most chemo/radiation you could give. She actually had the amounts an adult would have. I hope that gives you all an idea of how severe her treatments were. The majority of this past year she was not able to play with her friends or go to school. We are so appreciative of the fundraisers that occurred to help us keep our heads above water. We had to purchase in November a minivan. We had a Ford Expedition that was paid off, but I was unable (at 5 feet and 95 lbs) to lift Payton who was paralyzed into the truck safely. I also couldn't lift the wheelchair in the back without potentially killing myself in the process. So now we have a car payment. Unfortunately I am explaining this because some individuals made statements. I don't understand why people say the things they say. But as most of you know, Patrick and I hold our values at high standards and will not let a few idiots tarnish our daughters name or our goal of fighting childhood cancer. Someone even made a statement...there are other children besides Payton who have cancer. Yes you are right that is why we are fighting so hard to raise money for research. We lived and breathed hell for a year. I don't want anyone to go through this. Unfortunately my daughter won’t be able to benefit from our efforts. Dick Vitale and the V Foundation are trying to raise 1 million dollars in Payton's name for childhood cancer research. How awesome is that if we are able to raise 1 million dollars for research. What difference does it make whose name is on the grant. Why the anger? Think about breast cancer and the pink ribbon. Yes there is a name that goes with that, but isn’t it for a great cause? Breast cancer has come a long way, thanks to a sister who dug deep and said "this is unacceptable...we need to do something". Well, we are here to say childhood cancer is unacceptable and we need to do something. Children should not have to have chemo and radiation. Many of you have asked how we are doing with our medical bills/expenses and how they can help us. First, thank you so much for thinking of us in that way. The caring that many of you have showed us touches us so deeply. We cannot wait until we are able to help make a difference like all of you have shown us. We are hanging in there, but we do continue to have large medical expenses. We will be starting the process of becoming a foundation. I hope you understand why we could not last year. It will take a few months until it is finalized. I have been asked "what can I do" by so many of you. You can help by coming to our golf outing September 21st and the walk on September 22nd. We need to fight this disease together. Those who participate in breast cancer functions have made a difference. We cannot do this without your help. Rally your troops and lets attack this disease in great numbers...no one’s child should ever have to go through this. Instead of having childhood cancer on the rise, let’s work to push it down a hill at high speed. Thanks to all who have stated they will be Payton's Crusaders. We ALL will make a difference. It may take time and a lot of hard work but we CAN change the outcome. I hope you all have a good day. If anyone has any suggestions to help raise money for research, please let us know. All my love to you and thanks to those who are truly in our corner.
Love and hugs,
Holly and Patrick
Tuesday, June 26, 2007
Today is Tuesday. It has been a month today since Payton has passed away.
Even though she is not physically here with us, we know she is with us spiritually. We wake up each morning and greet her with "Good morning Payt, I miss and love you". I know she hears us. I just wanted to write something quick before I leave to take the girls to camp. Thank you so much for your support after my last update. I even received a ton of personal emails of support as well. It is a shame that there are people out there that say negative things, but we are not giving it another thought. We have a mission to do and will be focused. I have had several people email me regarding a walk in Pittsburgh. We have not proceeded with one yet. Our life took a huge spin right now, but we love the idea. Actually our goal would be for a Payton walk in as many states as we can to raise money for research. If any of you are interested in putting a walk together, just let us know and we can help you set one up. We will help with t-shirts to the actual process. I think the only way we can make a difference is to spread this around the country and get that awareness out there. I am so excited that so many of you would like to do this. I know this is Payton's mission and she is very proud and thankful for all of your support. She will help us make a difference. You can also check out what Dick Vitale and the V Foundation are doing with Payton’s Research Grant by looking at the front page of her site and clicking on the link. Well I need to get the girls to camp. I will try to get another update out later today. Make it a great day.
Thursday, June 28, 2007
Today is Wednesday. Well, we made it through Tuesday. I still cannot believe my little one has been gone for a month. However, I spoke with someone the other day that made me feel so much better. And I realized that even though Payton is not physically here, she is in spirit (and what a SPIRIT)!!! When I view it that way, in my mind I don't feel that she is completely gone from me...we all talk to her every day. We say good morning and good night with kisses blown to her. Payton from the beginning of her illness wanted either a hamster or a rabbit. The doctors told her she couldn't have any until she was better. We said the same statement. Well, the girls have been on a kick about getting a hamster for the last few months. Again, we said no, but Patrick told them he would get them one on a Tuesday. He never specified which Tuesday (he was biding his time).
Anyway, yesterday Patrick and I thought it would be a good idea to get them A hamster....it was something all of the girls wanted. I can home with two!
Again, I am just a mother! Sydney's hamster is named cheese and Savanna's hamster is named marshmallow. How appropriate...food names...right up Payton's alley. Well we had another Payton's fundraiser meeting last night and it went well. We can’t thank the people on her committee who are working tirelessly. Let you know more when it gets closer to the event day (Sept 21 & 22nd).
Thanks to all of you for your support and prayers.
Holly and Patrick
Today is Saturday. My days are becoming harder and harder to deal with. I
used to hate the evenings and love mornings, now it is the opposite. I think every day that comes and goes are hits of reality for me. I am trying so hard to keep it together and be strong, but it is getting more difficult. I have so much anger, guilt, sadness that it is starting to get harder to distinguish one from the other. So many people have told me it doesn't get better just different as time goes on. I can see that. I don't think there will be a day that I don't think and wonder about Payton. I know I look at children now and think of what she would be doing. This is such a nightmare. I wish I could wake up from this. The girls seem to be doing alright. They received some info from an organization called "super sibs". They seem to like the packets. Today they have their camp show. They are so excited to perform the Aristocats. I hope to be able to put their pictures up on the website. Before I forget, some have asked if we are doing a run this year for our fundraiser. We unfortunately we got behind schedule and are unable to put the run together, so this year it will be a walk. We still hope that all of you runners will still help us and join in the walk. I also wanted to comment on someone’s drawing of Payton, I loved it! My mind is a bit off these days, so please forgive me for not responding as quickly as I would like. Thank you again for all of your prayers and support. We need it right now. I hope you all have a wonderful weekend.
Thursday, July 05, 2007
Today is Thursday. We hope you all had a nice 4th of July. As you would suspect, Patrick and I had a hard time with watching the fireworks. However, right before the fireworks started I reached my hand into my jacket to put Sydney’s hair band away. I felt something small and pulled out a pink teapot that belongs to Payton's Ariel miniature play set. At that moment I knew she was there watching them with us. Last year, I watched the fireworks from Payton's hospital window. Patrick was home alone and the girls were in Pittsburgh with my mom and dad. Savanna leaned over to me last night and said "I love you mom and it is so great that we are all together this year"...we just sat and held the pink teapot. We are all working very hard to put together the golf/walk for September’s fundraiser. Thank you to all of you who have continued to help us with your support. We especially want to thank the Vitale family for trying to raise 1 million dollars towards Pediatric Cancer Research. This grant means so much to us. Not only because they are putting it in Payton's name, but this grant will hopefully begin the long road to help other children. We spoke with the Vitale’s earlier this week and they are continuing to work hard in Payton's name. They are an incredible family to have reached out to us like they have and this grant will help so many…. just awesome. We are so inspired by them and so should everyone. If you want to help but are unable to make it to our September fundraisers, please go to the V Foundation or www.dickvitaleonline.com website where you can make any donation. Please remember to write your check out to the V Foundation and specify in your check memo "Payton Wright" in order for your donation to go to Pediatric Cancer Research Grant in her name. We appreciate all of your help in our fight. I hope you all have a wonderful day.
All our love
I want to say as well that we can’t thank all the people who have been so supportive throughout this past year and continue to be. Many of you have been working tirelessly to put together events and work so hard at keeping Payton’s spirit alive! Thank you…Thank you.
Love you all,
Tuesday, July 10, 2007
Today is Tuesday. Every Tuesday I automatically say the number of weeks it
has been since Payton has passed. I don't know why I continue to do that for it brings so much sadness. I really don't know how to explain what this has been like for Patrick and me. When I look at little ones that were the same age as Payton, it kills me to think what we had to put her little body through. These kids not only look small they are small. I miss everything about Payton. I think I am still in shock about this entire
year. I can not believe that this happened to our daughter...I can not believe that we had to plan her funeral. I was not supposed to bury my baby. Cancer took so much away from our family. Not only our precious little girl, but the innocence of our older girls. Cancer put challenges for Patrick and I. We have had to work so hard to keep our marriage strong. I am so blessed to have such a wonderful husband, but we are both hurting and it gets difficult to help him when I can't even help myself. The financial aspects have been hard as well. No matter what we put Payton first. We both needed to be with her and take care of her. Our time was needed for our children this past year...not for anything else. We work daily on rebuilding our life again. Payton is still and always will be part of our new life. We talk to her and the girls still include her in their playtime. I just miss the physical part...I wish I could give her a hug and read her a story. She loved going to Little Bookworms book store. It was one of her favorite places. It is getting harder for me to write. I cry more and more and at this point I can't see the screen very well. However, before I go I want to tell you a story that a very dear friend told me about...it is a Payton moment. Our dear friend Tina wanted to share this
with us. Tina is NOT good at flying on airplanes. She said she prays non- stop from the minute she gets into the airport to sitting on the plane to landing at her destination. Anyway, she was leaving Florida after Payton's funeral to fly back to Pittsburgh. As always she was very scared and was silently praying while she was getting on the plane. She was looking for her seat and when she found it...in the center of the seat was a purple
heart (it was the craft foam that kids use in their art work). She picked it up and thanked Payton. She had a connecting flight, so when they stopped in NC she went to buy a magazine. Right next to the magazine that she was buying were two beautiful frog bracelets (she is a mom and bought both for our girls). As they went to get back on the plane, Tina told her husband she was very cold and didn't have a jacket. As she approached her seat, there in the middle of her seat was a purple blanket. No other seats had one but hers. She said she felt Payton was just watching over her that night. It all may sound so silly, but for us it is so comforting. Thank you Tina for that story...that was how our Payton was...thoughtful and caring. She always worried about others. Thank you all as well for your continued prayers and support. We are getting through our days one at a time. It is very difficult for us. The loss of a child is so hard. Our hurt is incredibly deep.
All our love
Holly and Patrick
Monday, July 16, 2007
Hello everyone. It has been awhile since I have written an update. Holly is usually the writer in the family. I think it has been very therapeutic for her to write down and express her feelings this past year. I have not done this as often and she thinks I need some help dealing with Payton’s loss. She is probably right about that, but being a typical guy, I think I can handle it on my own. Well here to say that is easier said than done. This past year I tried so hard to “fix” Payton . I found the best doctors, the best hospitals, the best care, and medicines. Holly and I worked around the clock caring for Payton. We spent countless nights at All Children’s hospital in St. Pete and at Duke. The emotional and even physical toll it took on us both was tremendous and continues to be so. I was not prepared for how very hard it was going to be now that Payton is gone. Holly and I seem to just wander around with blank stares in our eyes. The house is so quiet without her and we miss hearing those “Payton sayings” like; I’m hungry here, or FINE, or is anyone going to feed me, or just a simple I love you daddy. I would give anything to hear that one more time. I continue to say I love you Payton everyday and can’t stop thinking about her. I wonder how long I will feel so sad. I saw something this past Friday that really made me think that I will never ever stop feeling the way I do. I tried my best not to burst out into tears in front of so many people, but later that night with just a few family and friends I lost it a bit. I was at a golf outing for Muscular Dystrophy that is put on every year for I think the past 13 years or so. One of my good friends Brian and his partners put it on every year. Anyway at the end Dustin got up to speak to everyone which I think he does every year. Dustin lost his brother to Muscular Dystrophy I believe 13 years ago. What really hit me hard was how emotional he was trying to speak about his brother after 13 years of his passing and why they do what they do every year to raise money for their cause. Right then I knew that I will never get over this feeling of sadness and it was very difficult moment for me. I left there ready to go to a party afterwards and I just couldn’t go and be around people. I want to say that I am so proud and honored to know the people I can call friends and how I admire someone like Dustin who can continue to do what they do in the name of their loved ones. I also truly admire the Brian’s of the world who work tirelessly for their friends causes. There are so many family and friends of Holly and mine that work hard at raising awareness and money for us, the V Foundation, Hospice, you name it, just because they want to do something for us and in Payton’s name. There are so many that I could start listing them all and I would still be writing hours from now. These people know who they are and we thank them so much. But really how do you thank those people? This is something that I think about constantly and have a very hard time dealing with. I am really having a tough time with outpouring of support from so many. Not that I don’t appreciate it, it is just hard for me to understand why us. I don’t know why, but it is very emotional for me. Love and compassion are powerful emotions that I never knew until going through this can absolutely change the way someone can view the world. I think that is what I see differently now in people, because I totally see and admire so many for what they do for others and not themselves. We are changed forever and I know we will never be the same people we once were. I am getting some comfort right now as I write this, it is somewhat therapeutic as Holly has said to me it is. I also hear Holly, Savanna and Sydney play a game in Payton’s room. They just love sitting in her room playing board games and talking to Payton. That is about as good as it gets right now. I will take it. One day at a time. I know I will get through this for my family, but I also know that it will be one of the most difficult things I ever do.
In closing, I want to thank so many of you for the cards we receive every day. We just can’t thank you all enough for your support. I truly mean it and love to all of you.
Wednesday, July 18, 2007
Today is Tuesday evening. As usual I woke up stating the week since Payton's passing. I find it very difficult to say the word death. I read the poem in the guestbook regarding "My mom tells lies". Yes, I tell them every moment of every day. I am asked all the time how I am doing or how Patrick is doing and my statement is always the same "we're doing alright". Patrick and I try to smile through our pain. Well to be honest we aren't. I cry all the time and I feel so lost. I know I am still in shock. You would think that after almost 2 months (if you can believe it has been that long) that I am still in shock. I look at my little girls pictures and think what happened. How could this happen to her to us to our family. This past year seems like such a blur. I just want one more moment with her...I say to myself over and over "Oh my god...Oh my god..because I can't. I try to
remember that when I look at Savanna and Sydney. It is so hard to pull yourself away from your heartache. I don't want to miss out anymore on Savanna and Sydney's life. I try to focus on them and give them as many hugs/kisses I can...but it takes effort. Don't get me wrong, I love my girls and I am so sad over what they have and are going through. I don't want to miss out on their life, but my mind and heart is crushed. It takes so much effort to pull myself into the present moment. I can see how someone can go crazy. We have a meeting with a grief counselor on Thursday. They are from Hospice. I hope it helps. There really are no words to describe how we are feeling and doing. We are just trying to make it through each day...it is difficult to take care of ourselves because our
first priority is making sure the girls are ok. I miss my old life so much. I miss having all three girls around me, I miss the girls playing together and having their little fights. I miss normal. I miss going to bed without stress, worry, sadness, heartache. I miss being happy. To be honest, no matter what anyone tells me, I will never have any of that back.
Our family lost so much due to cancer...we lost not only our precious Payton but large pieces of ourselves. I don't mean to make this update sound so depressing...but I thought I would let you know how we really are doing. I saw a picture of a little boy who was in need of a bone marrow transplant. There was not a story attached to the picture, but the
unfortunate thing for me was I already knew the kind of story he had. When you see a picture of a child who has cancer...I just want to stress that there is more to their story than their cute little round faces. They endure so much. I know I have shared our story with you all this past year, but there is alot I didn't tell. I could not put into words the pain or feelings or describe her wounds. I could not put into words the sleepless nights due to worry or her care. I can not put into words really what it is was like to watch your child die. It will be with me for the rest of my life. To watch your child take her last breath...as I said there are no words. Well, it is late and I need to go kiss my children goodnight. As I hope you all know, I thank you so much for being such great friends and supporters. We need your shoulders to lean on and you all have been so wonderful for sharing them with us.
Love to all
Holly and Patrick
July 25, 2007
Hello everyone. We are in the process of putting together a new website for Payton and it is in the beginning stages so please bear with us. You can still get to the site from www.portercs.com/payton but now you can go to www.paytonwright.org From here you can listen to Payton’s Song that was written and sung by Dan at our church, Harvest United Methodist. We just love the song and I hope you all will as well. Soon the site will be all set up and functioning, so like I said bear with us as the kind people at Net Wise Tech are putting the finishing touches on the site.
We are doing OK….that is about it. We spent some time with Pastor’s Steve and Katherine today and they helped us out a lot. Even though there are really no answers that will truly help, we are glad they are here for us as well as so many others. We continue to receive letters of support and Mr Lee sent us one that helped us in so many ways. We don’t really understand why Payton has touched so many lives, but she has and we feel so blessed. Mr Lee said in his letter that “people who understand need no explanation, people who don’t no explanation will suffice”.
Thank you all again for your thoughts and prayers and we will be in touch soon. I hope you all enjoy Payton’s Song.
Love to all,
Patrick and Holly
Thursday, July 26, 2007
Today is Thursday. It is around 3 am and there is no sleeping in our house. As I just started to write, in walks Patrick...he is up as well. We had Pastors Steve and Katherine over yesterday to help us. I had lots of questions that unfortunately no one can answer. I felt that we all prayed so much for Payton. I do feel that our prayers were answered by her not suffering anymore. As I have stated over and over I know she is doing fine.
She is healed, happy and running just like I only wanted for her. I think my questions have been, "god is greater than cancer, why did he not heal her"? I don't want to hear that I didn't pray enough. I alone prayed non-stop for my child. I guess I will just have lots of questions when it is my turn to go. I've been saying that I will live a very long time because god doesn't want to hear my mouth when I get to heaven. We are all doing ok. The girls don't want to talk too much about it...Savanna says it hurts too much. Sydney just gets tears in her eyes and says she just misses Payton...don't we all. I converted Payton's room into a play room and the girls love it. It has been great to see Savanna, Sydney and their friends go into Payton's room and play. I know Payton loves having them in there. I have been offered by a friend of my neighbor Laura to have Payton's clothes turned into two blankets for the girls. I thought that was a great idea. I couldn't part with her clothing and this way the girls can have her stuff wrapped around them. I hope you were able to get onto Payton's other site to listen to Dan's song. We are in the process to get this other site up and running, so bear with us. (read the above update) We wanted to get the song out to you all. We have met so many talented people. Dan did a great job with this song. I also received a beautiful pencil drawing of Payton from Mena C. Mena, there are no words to describe this picture. You are so talented, I hope you understand that. Thank you so much for thinking of us and spending time drawing that picture. It is framed and will be placed in our room. Thank you again...I really hope you know the talent you have. I also wanted to thank Mr. Lee from All Children's for your letter you sent. Mr. Lee...I hope you know how much Payton loved you. Mr. Lee was the first person Payton would see when she went to the clinic at All Children's Hospital. She would always bring him some sort of candy and would talk about food with him (her favorite subject). When we were at Duke (and even at her worst moments) she would tell the staff at Duke that they didn't prick her finger the right way...they needed to do it like Mr. Lee. She would look up at me and state "they are doing it all wrong...Mr. Lee doesn't do that, they need to do it this way". At one point the person that was dealing with Payton asked her to explain how Mr. Lee does things so that Payton would get off her back! I have to laugh when I think of my Payton. Patrick and I would always state (even before Payton got sick) that we didn't need to worry about Payton...even though she was the little sister, we felt she was the one that would protect the older girls. She would let people have it! I always wonder now, what she would have been like as an adult. She definitely would have gotten her point across, no doubting that! Since my mind has been like mush, I believe there is a blood drive at Harvest Methodist Church the first Sunday in August. I have been in contact with a lot of families who are dealing with sick children. They can use your help. Please continue to donate your blood. There is a need for blood and platelets. Thank you all so much for your continued support. Even at our lowest moments you all have been there to help us and keep us standing. It takes alot these days and we really appreciate your kind words, encouragement and advice. I hope you all have a good day tomorrow.
www.paytonwright.org is the new site that is being put together and Payton’s song.
All our love,
Holly and Patrick