Week 2 Chemo

Monday morning we awoke to Payton having a high fever. We headed to the hospital for Payton’s last day of radiation and a chemo treatment not knowing what to expect since he really didn’t have a very good weekend. We arrived at the hospital and met with Payton’s radiation nurses, where he was immediately put on IV fluids. They decided to go through with his last radiation treatment (we are glad to have that over with, one more step closer). We then went to the oncology clinic where Payton was to get his outpatient chemo treatment. We informed the front desk that he was running a fever and we were immediately seen. After checking Payton’s temperature and testing his blood counts we were told that he needed to be admitted to the hospital. His white blood count was “0”. We got to our room not knowing what to expect, and were told that he might have a virus since his blood count was so low and immune system was down. Payton was pretty sick all day and didn’t get out of bed much.

Tuesday; we are still in the hospital. Payton still has a high fever, vomiting, and low blood count and so he needed a blood transfusion. That was something new for us and was scary. We better get used to it since it sounds like we will need a few of these over the next 30 weeks. They tried a new anti-nausea medicine on Payton today and he started hallucinating, he thought he saw a dog in the room and said he was seeing bubbles which he tried to pop. We decided that we didn’t want him to have that medicine anymore.

Wednesday; we are still in the hospital. Payton still has a high fever, vomiting, and low platelet count so he needed a platelet transfusion. Payton has quite the lungs on him and his favorite word to tell the nurses is “NO”. Payton is pretty self conscious about the incision on his belly, he will often say “don’t touch my “owe.”

I think that this is all starting to affect Payton’s sister Savannah as well as us. Savannah was at her Aunt Jennifer’s and had a melt down. She is starting to ask a lot of questions to why this is happening to her family. It has affected all of us and we are going to have to somehow find a “new normal”. We are all going to have to stay strong to get through the next 30 weeks.

Thursday; we are still in the hospital. Payton’s still has a high fever, vomiting, and his white blood count was a little better today at “0.3”, which we were glad. Payton’s ANC (Absolute Neutrophil) count was 90 today (A normal healthy child’s ANC count is 1,500). We need to get it up to at least 200 to be able to leave. They decided to order a chest x-ray to make sure they weren’t missing anything. We received the results and everything looked just fine. We were so grateful. We are hoping to get out by the weekend since this has been a really long week. Payton still has not wanted to eat anything; I think the last time he ate was Sunday night. Today we noticed that Payton’s hair is gradually starting to fall out which is really hard for us to see.

We are so grateful to all of our friends and family that have helped us get this far. I feel so lucky to be able to spend every day by Payton’s side, while he has been sick. I am so thankful to the people who have provided a way for me (us) to be able to do that and to not have the worry and burden about having to be at work. I am also so grateful that Chad received the fellowship grant which he did so that he has some flexibility as well. It’s been really amazing how the Lord has worked through other people to provide a way for us to be able to be by Payton’s side during this difficult time. We have such amazing friends and family and feel so blessed to know each and every one of you. Thanks for the strength and support that you give us.

Friday; we are still in the hospital. Payton’s fever finally broke (we were thrilled). Payton’s blood count was still a little low and so they decided to keep him at least one more night. Payton received chemo today and it has made him sick again. He was just starting to feel a little better. This is pretty frustrating. We really just have to take this a week at a time. We had Savannah come to visit and stay the night at the hospital. Payton was really excited to see her and had been asking where did sissy go? It has been good for us to all be here to regroup. We have mixed feelings about wanting to go home, we want to get home and yet Payton still is not eating or drinking much and would hate to see him go down hill again over the weekend. We’ll see what the doctors say tomorrow.


Saturday; Payton's white blood cells were up and we were finally able to go home! Of course his first meal after arriving home was hot noodles from Joe's. We hope that Payton will have a good week and will be able to recover his strength to begin chemo again next week.



Payton getting ready to go "night-night" before one of his radiation treatments. Nurse Cindy was so nice and so sweet to Payton.


The nurses get Payton ready for his radiation treatment.














Payton waking up from his radiation treatment on the "yellow rocket".

Start of Chemo

This has been a pretty crazy week. Payton started his radiation as well as chemo. He had radiation daily and a heavy dose of chemo on Monday and Tuesday. Payton was admitted into the hospital on Monday and was supposed to only be in for one night; since he got so sick they kept him an extra night. Looks like every time he gets certain chemo drugs he will have to be admitted into the hospital. Payton’s aunt Jennifer is a nurse at Cook’s Children’s Hospital and was working on Tuesday night; she came and walked the halls with Payton since he didn’t want to lie in the hospital bed. We brought Payton home on Wednesday and feel that he has gone down hill pretty quick. We didn’t expect him to crash so quickly. He hasn’t wanted to eat or drink much and everything that he does eat or drink seems to come back up. Payton seems much thinner since we brought him home from the hospital. He has been lethargic and doesn’t want to play. We almost feel like we have a newborn again, since he constantly wants to be held. Payton has been traumatized by all this and often wakes up with nightmares.

We are trying to prepare ourselves for starting another week of Chemo. Payton only has one more radiation treatment which is Monday, we are very glad for that. There are certain weeks coming ahead that we have Chemo for 5 days in a row. We are trying to brace ourselves for those weeks. We just ache for Payton and what he is going through. It doesn’t seem fair that a 2 year old should have to endure so much. We are trying to stay strong, but this has not been easy. We pray every day that it is the “Lord’s will” that he will get to stay here with us. We have such a great love for Payton that keeps growing stronger every day.


Payton and Savannah having fun on the swing the day before the start of chemo.

Payton and Savannah on the trampoline.

Payton is understandably tired after his first round of chemo.

Payton was excited to have a visit from Savannah and Carly.




Payton having a little fun with mom.

On Tuesday, we received a call from Dr. Bowman regarding a revised histology of Payton's tumor. A pathologist at the National Wilm's Tumor Study Group modified the prognosis from a stage 1, favorable histology to stage 2, diffuse anaplasia (unfavorable histology). Apparently the tumor had penetrated the renal capsule (outer lining of the kidney) and the cells displayed subtle characteristics associated with anaplasia; therefore necessitating a more aggressive post-surgical approach. Bad news to say the least! Now Payton will have to endure more extensive chemotherapy (5 chemo drugs for 28-30 weeks) accompanied by two weeks of radiation. This more aggressive approach carries with it a higher likelihood of long-term side affects due to the chemotherapy and radiation and an increased chance of relapse. Payton will start his Radiation and Chemo treatment on Monday. He will spend at least one night in the hospital to be monitored and kept on an IV to make sure that he stays well hydrated. Despite this, Payton still has a very good long term prognosis. With proper Chemo and Radiation the odds for relapse at a stage 2 with unfavorable histology are around 20 percent. We have faith that Payton will come through this just fine. We are praying that he will have the strength to get through this without any long term side effects, minimal short term effects and no relapse. After 28-30 weeks of treatment Payton will have continue to have MRI’s every 3 months, and they will continue to monitor his heart since one of the side effects of the chemo drugs could cause damage to the heart muscle (the left ventricle.)

Our love for Payton grows more each day. He has such a special place in our hearts and we are determined to do whatever it takes to help him get through this. We ache to know what he has ahead. We will be right there by his side to make sure that he stays strong. We can’t thank everyone enough for your continued prayers and strength that you give us. If I could give any advice it would be to not take life for granted, don’t let a day go by that you don’t appreciate what you have. Life is so precious. I want to thank everyone in our lives, we love you all.

Payton enjoying some "hot noodles"

Welcome Home Payton!

We received great news today from Doctor Black who told us that Payton was ready to go home from the hospital. We were so excited since Payton was getting restless of being in his room. He was having a hard time staying in bed and was constantly saying "down". There is not much that can stop this little guy. Before leaving, we took Payton on a final wagon ride where he proceeded to give the fish in the playroom a kiss goodbye. We loaded Payton in the car and told him that we were finally going home. He grinned, began clapping his hands and said "yea, yea". He was truly excited to be going home. We stopped at Sonic and got him his favorite, blue coconut slush. We were greeted by Grandma, Savannah and Becki who had brought over a welcome home sign and balloons. There wasn't much we could do to stop Payton from running through the house in search to find his toys. In the afternoon our neighbor Becki took Payton for a ride in Tony's truck. Payton smiled from ear-to-ear as he got to ride around. We decided to get take-out from Payton's favorite restaurant Joe's Pasta. He could hardly wait to get his "Hot Noodles" which are his favorie food. He didn't even make it to the table before he started eating away. He quickly finished and said "more, more". We were thrilled since he has lost some weight from being in the hospital. While still in some pain, Payton is trying to carry on as best he can at getting back to being a rambunctious two year-old. We are meeting with the oncologist on Friday to discuss our plan with Payton's Chemo. We anticipate that he will start the following week. We are so grateful that Payton has done as well as he has this far. We can't thank everyone enough for the love, support, prayers and strength that everyone has given us. We know that we still have a road ahead of us, but are positive that we will see the end with good results.

A final wagon ride around the 4th floor.

Payton giving the fish a kiss goodbye!

Leaving the room!

Welcome Home Payton!

Hot Noodles Please!

Day #4- Restless in the hospital and on the road to Recovery!

Today was day #4 in the hospital for Payton. He was finally given solid food which seemed to make him sit up in bed with such excitement. The minute they brought in scrambled eggs and french toast he sat right up and scarffed it down without taking a breath in between bites. His favorite food is "hot noodles" and he kept calling his scrambled eggs "hot noodles" because he was just so happy to have FOOD. He is also getting very restless in the hospital bed and every time he is put back in the bed insists that "no, No Nigh night" He wants to be up and going and his little body is just not quite ready for the energy and activity inside him. Payton wanted to be up in the wagon or in the play room all day. He was hard to keep up to because he is still connected to his IV fluids/pole. We could tell that he was hurting more because he would run around the room or try and pull his wagon and hold onto his back and say "ow, ow". We have been trying to push fluids with him since he just doesn't want to drink much. This is very unlike Payton since he has always been our "juice" boy and his favorite thing is a Route 44 drink. We are pushing popsicles, juice, water, ice cream, you name it so he can get out of the hospital tomorrow. These four walls are closing in on him and us! We are so grateful that he has come so far in just 4 days and are anxious to get him home and on his feet before we get to start chemotherapy.

Day #3- Much to be Grateful For!

They had a party for patients and their families in the Atrium at the hospital. It was a chance for us to get out of the room and spend some time with Savannah. Between the playrooms, playground and all the children's activities, Savannah and her cousins, Noah, Riley and Ella, think that a children's hospital is a pretty fun place to go. I think Payton would have a different story!

Payton did get out and play in the play room. He was a little wobbly on his feet but was still strong enough to push that lawn mower around and was even quite irritated at the tubing connecting his mediport to the IV pole and fluids.

Eating my pop-um in my bed and playing with my cars from Brian and Lisa, Michael and Dani.

Day #3 and Payton finally got to start drinking. As much as he thought he wanted juice or "wa-wa" he still was just not feeling very well today and didn't drink quite as much as we thought he would. The one thing he did want was a "pop-um" or popsicle as well all know it. He was so happy to have a popsicle and he loved being pulled around in the wagon eating his popsicle. Day #3 brought more pain because he is starting to want to move more and insists on walking. He has learned that he really doesn't want to get back in the hospital bed and points to the chair to be held to go nigh-nigh! He was started on oral pain medication tonight so hopefully it will last a little longer than the morphine but still continue to control his pain. He was a little more irritable but that probably means he is now wanting to be more like his normal self and just is not quite ready to be.

Good news came from the biopsy reports today, stage I Wilm's tumor with favorable histology. The lymph node and liver biopsies came back without any cancer growth. What an answer to lots of fasting and prayers. Because of the tumor being in stage I he will still need 19 weeks of chemotherapy, but will more than likely have a 100% cure rate after the chemotherapy. Tonight the surgeon brought in pictures of the kidney/tumor. It was hard to tell that it was actually a kidney because it was so large. The tumor weighed 449 grams and was 12.5 cm long. Payton's little round belly is much flatter now that that awful tumor is gone. We are hoping to be out of the hospital by Saturday, much will depend on how Payton does on oral medication and how he does with eating tomorrow.

We are so very grateful for all the love and support that we have felt. We have had so many people bringing food, toys, balloons, flowers, prayers and words of encouragement. How do you even begin to thank the wonderful people in our life that we call family and friends. We are so grateful that the Lord answered our prayers. In so many small and large ways, we have seen the Lord's hand in carrying us through this experience. 19 weeks to go and we are ready to face the battle!

The first step! Payton's first two days in the hospital!

Our sweet little Payton- this is when we finally got to change him into his own pajamas and he was in a nice little sleep thanks to his morphine! This is the children's hospital, Cook Children's, where Payton is and where his surgery occurred!

Savannah came to visit me in the hospital- she brought Payton so many cool toys that he just couldn't help but dive into the bucket! Payton with his nasogastric tube still in place- he did so good at keeping it in and not touching it!
Payton after he got his nasogastric tube out- he quickly decided that he wanted juice and cookie!

Grandma and Savannah coming up to visit me on my second day in the hospital!

Our Sweet Payton! June 5- Day 1 on the Road to Recovery!

Our Sweet Little Payton- so tough and all boy- has endured so much these past couple of days. He is so strong and has tugged at our heart strings and made us pray more than we have ever prayed before.