Another Crazy Week!

Payton started fevering on Friday night (July 20th) after a couple calls into the oncologist throughout the night; we were told we needed to take him into the Emergency Room. We arrived and blood tests were taken right away. We found out that Payton’s Platelet count was at a dangerously low rate of 1. Blood Transfusions are normally done at 20. They immediately admitted us into the hospital and gave him a platelet transfusion and red blood transfusion. Platelets are what cause your blood to clot if you get a cut. Luckily Payton didn’t or he could have hemorrhaged. It was pretty scary. After talking with Payton’s Oncologist we need to watch him even more closely since we were in on Thursday, had a platelet transfusion and then he still dropped to a level 1 in just less than 48 hours. We were told that the bone marrows of some children do not take chemo as well and, it looks as if that is going to be the case with Payton. We are really lucky in ways that he started to fever so we could get him the help that he needed. Payton has continued to have several transfusions during our visit.

On Sunday we had a bit of a scare we noticed that Payton’s stomach looked really enlarged. That evening we noticed even more of a difference. We informed our nurse and requested that she called our Oncologist. Our Oncologist ordered an Ultra Sound to see what we could figure out. We found out through the ultra sound that Payton has what’s called an Ascites which is an abnormal build-up of fluid in the abdomen which can be very uncomfortable or painful. We had a little scare because one of the causes of Ascites can be cancer cells in the liver. That was a scare that I don’t want to experience again. Thank goodness they didn’t see any masses on his liver. They also decided to do a blood culture to test the function of Payton’s liver and kidney. All came back fine. We did a Chest X-ray on Monday and found out that Payton has what’s called typhilitis which may be caused from some of the chemotherapy drugs. Typhilits is an inflammation of the cecum and colon. It usually takes about 2 weeks to clear. In the meantime Payton is going to be pretty uncomfortable with such a large abdomen. Payton is being treated with 5 different kinds of antibiotics to try and treat this. We are hoping that he will be fine and that no surgery will be needed. If surgery was needed some of his colon would need to be removed. Payton also had to have a EKG to check his heart, because some of antibiotics that he is on have the potential to cause heart damage.

Payton’s blood work came back on Tuesday and we found out that he has fungal infection in his blood stream. It feels that we are dealing with one thing after another. We are feeling pretty frustrated about right now. Not sure if this infection came from our time in the hospital or at home. Payton was seen by and infectious disease specialist today and was put on antifungal medications to treat this. There is a possibility that they could have to go in and surgically remove his port if this doesn’t get better in a couple days. We were told that this could take up to 3 week to clear. This could be life threatening if left untreated. We feel really frustrated, overwhelmed and feel so sorry for all that Payton is going through. Payton still continues to have a high fever through this and has a very little appetite. He has been put on Intralipid IV fluids to give him the nutrition that he needs since he hasn’t been eating. Our nurses have stayed busy running all of these IV’s. There hasn’t been much of a break.

We are really nervous and apprehensive since we have had such a hard week due to the effects of chemo. Payton was scheduled to have the same round of Chemo on Monday. Looks like that will be postponed until all this clears up. We have heard that Payton is the first to be on this regiment of 5 doses of Chemo in this hospital. We hope that things get better throughout this. It’s not so much the week that he has Chemo; it’s the weeks after and the later effects of chemo that you have to worry about. Payton’s blood count levels will drop to their very lowest 10-12 days after the first day of chemo. It looks as if the hospital will be our second home for a while. Payton’s blood count levels are still low and we are waiting for them to rise.

We have no idea how long our stay will be in the hospital at this point. It depends on how well Payton does. This is frustrating since we know that his is prolonging his chemo and we feel he has had to endure much more than he should. It’s been hard to watch Payton be so sick. We miss our mischievous two year old boy. We can’t wait for the day that we can see Payton be himself again.

Savannah left to go visit Grandparents in Utah on Tuesday for 2 ½ weeks with her aunt Jennifer and cousins. I hope that she can go and have a good time. I worry a lot about how this is all affecting her. She is such a sweet girl and is so sweet to her brother. She doesn’t quite understand why Payton can have ice cream and brownies for breakfast and she can’t. Payton’s taste buds have changed a little since Chemo and we have to feed him whatever he asks for.

Week 5

Since we got Payton home from his 5 days of chemo in the hospital, he has been pretty cross, which is to be expected for all that he has been through. Payton has wanted to be held a lot and doesn’t have much energy. We took him in on Thursday to check his blood counts and he ended up needing another platelet transfusion. I guess that explains why he hasn’t had much energy. Payton’s blood counts drop to the lowest point 7 to 10 days after his first dose of chemo, which is right where we are at. Payton is most susceptible to anything right now and has to be watched close.

While we were at the hospital getting blood work done today, we were able to talk with one of the oncologist. We were talking with the oncologist about The National Protocol and how they had added a fifth chemo drug carboplatin, which has been used as a relapse drug for Wilm’s tumors, brain tumors and other types of cancers. Through this National Protocol study we are hoping that by adding this drug and using it upfront that it will increase our odds of no relapse even more. We just hope that this never comes back since that would mean that these cancer cells would be resistant to carboplatin. Payton is going through a pretty heavy dosage of chemo in hopes that we will get rid of any existing cancer cells the first time around. I think they are hitting him like they would have hit a relapse patient years ago. Our oncologist said that we have every reason to be optimistic. We are doing everything that we can and leaving the rest in the Lord’s hands. This is going to be a really bumpy remaining 25 weeks. The doctors are watching Payton really close and hope that he will be well enough to stay on the protocol and finish his full chemo. We are so proud of Payton. He is going to be the toughest little boy if he can make it through all of this. We love him so much and are so grateful that we have two wonderful kids.

P.S. Payton saw a picture of his tumor today and pointed to it and said "pizza."

Week 4 of Chemo

Payton was supposed to be admitted into the hospital on Monday for 5 days of chemo. We arrived at the hospital and were admitted. After getting settled into our room and receiving IV fluid for a couple hours, we were informed that Payton’s neutrifil levels were not high enough to start chemo. We were then discharged and told to come back on Thursday. We were a little frustrated since Chad’s mom had flown in from Idaho to help us with Savannah for the week. That’s what is so frustrating about all of this, there is just no guarantee.

We were then re-admitted again on Thursday to start our 5 days. Payton did quit well with his chemo this time. I think that this gives us a little bit of hope. We kept him on anti-nausea medicine around-the-clock and he made it through without throwing up during his stay. On Payton’s last day in the hospital he had to have another blood and platelet transfusion, since his counts were so low. Chad’s mom left on Saturday and we really appreciated her help with everything.

We are so blessed to have so many wonderful friends and family in our lives that give us so much support. Heavenly Father has blessed us in so many ways that we never thought were possible. It’s amazing how he works through other people. We want to thank everyone in our lives that have helped us get this far. We love you all. We have faith that Payton will get through this and live a happy healthy full life.




















During his stay in the hospital, Payton got to visit aunt Jennifer while she was working.