Savannah working on her school project

Savannah was to make a turkey into something different for her school project. She is doing great in 1st grade.

Making Carmel Apples with her cousins


Savannah's butterfly.

A day at the air show

We decided to take Payton to the air show on a day his counts were up since he loves airplanes.

Another Week

I took Payton into the clinic today to have his counts and an out patient chemo round. Payton’s counts were surprisingly pretty good. His Platelets were 103,000, WBC 8,600, ANC 2,510, and his HGB was 7.8 which is border line of needing a transfusion. Our oncologist said lets give it a couple days to see if his red blood cells can go up on their own. Payton is off of his neuphogen shots which will sometimes cause his counts to drop a little. We are scheduled to be admitted next Tuesday a week from today for another big round just as long as he has an ANC of 750 and Platelets of 75,000. Payton is scheduled for his CT scan this Thursday and scheduled for an Echo Cardiogram (EKG) on Monday which will make sure that his heart is ok since that can be one the side effects of these chemo drugs. I pray everyday that these chemo drugs do not cause any long term side effects. Payton is so brave. He realizes when we put a numbing cream on his port that he will have to be poked. Payton stressed about his cream on his port the whole way to the hospital. He said no cream, no doctor. Poor kid it’s just not fair that any 2 year old or any kid should have to go through this. Payton is getting pretty smart and is very aware of what goes on now at the clinic. He is so brave and I am so proud of him.

Savannah on the other hand seems to be improving everyday with school. I still can’t believe that she is a 1st grader. She is so lucky to have such a great teacher who is so understanding and kind to her. This is the year that we really needed a great teacher. Savannah is starting to make friends and I hope is coming out of her shell a little, she is pretty shy which is surprising since at home she is totally opposite. I hope that she will continue to do well as the year goes on. I worry a lot about her and want her to be happy.

All and all we seem to be holding it together a little better. Since things have slowed down somewhat I have returned to work one day a week on Saturdays. It has been good for me to get out and have some sort of sanity. I hope that we have found our happy medium with these reduced chemo dosages and that we can continue to do well. We are looking forward to next week since this will mark our half way mark of chemo with the large treatments. I am so proud of my family. I have sat back and watched each one of us struggle in our own way and yet we have really pulled it together and been a strong team. I have such great faith that we will see an end to this and that Payton will be cancer free and go on living a happy normal healthy life. I can’t wait for the day when I can see him be himself again. I want to thank all of our friends and family that have helped us get this far. Thanks for your strength, prayers, and words of encouragement. We love you all.

Week 11

We completed another big round of chemo last week. The big rounds are all in-patient. Payton is doing well so far. We are 40 percent done with the big rounds hooray! We are so grateful that he is doing better since Savannah has started school and life feels and little more chaotic. We had Payton back into the clinic today for more chemo, vincristine which is just outpatient and to check his counts. His counts were fine. He still has not hit his nadir yet. We need to take him back into the clinic again at the end of the week to have his counts checked. Next week we have a CT scan lined up. We are praying that all this chemo and radiation has killed any cancer cells and that nothing will show up. Savannah is back in school and has been struggling a bit; although, every day seems to get a little better. I think that it is more a separation thing than anything. She has a hard time being away from her family. Poor girl has been through so much the past few months. We are grateful that Payton is doing well again this round and hope that we continue to do well. We are hoping for no unexpected hospital visits again this round.
We are so proud of Payton. He is so brave.

A Day at Fossil Rim

We picked a day when Payton’s counts were good and drove to Glen Rose, Texas, to Fossil Rim Wild Life Park and Dinosaur Valley State Park. We figured Payton would be ok since you stay in your car to drive through and see the animals. The kids had a blast and it felt so good to get out of town for the day.

Savannah's 1st day back to school.

Finally able to continue on with chemo

My mom flew in for 10 days since Chad had to be out of town. She was such a big help since we were admitted in the hospital for 4 days. They had to access Payton’s port 3 different times. I felt so bad for Payton the first time they were testing out some new needles and didn’t get it in right. I noticed that he had IV fluid dripping all over his shirt. The second time they didn’t use the right size of needle. Third time was the charm. Poor Payton he was screaming louder than I’ve ever heard him scream. He was really upset. One time is bad enough. Sometimes I wonder what he is thinking. No two-year old should have to be this traumatized. That backed our chemo up until late into the evening due to all the problems. Payton did much better this round with the reduced chemo dosages. Dr. Bowman decided to reduce the chemo drugs that lower his counts by 25 %. We only needed 2 platelet transfusions and 1 red blood cell transfusion. His counts dropped to their lowest after 10 to 14 days and then went back up just like they should. No fevers which meant no unexpected hospital visits. This has given us some hope that we might not be in the hospital after every big round of chemo. It has been so nice to be at home a little more. I am so grateful that my mom was able to come. I’m not sure that I would have made it through the week without her. We were so glad to get Chad back.

Almost Home From the Hospital

As we near the end of our latest unexpected stay in the hospital (18 days to be exact), we are both excited at the prospect of going home for a few days to regroup and nervous for the future with another 24 weeks of chemo ahead of us. The past 18 days were more eventful than we would like and an emotional rollercoaster. We’ve learned firsthand of the intensity of Payton’s chemotherapy regime and how precarious his situation can be at times. At one point last week Payton woke up and gave us, his nurse, and Dr. Heime quite a scare; he was curled up, shaking, breathing erratically, and wincing from obvious pain. Dr. Heime was worried that his colon might have perforated and ordered an immediate platelet transfusion in case he was to undergo emergency surgery. A surgeon, Dr. Miller was called up to examine Payton and after examining him believed that Payton was experiencing intense pain because his immune system was now beginning to fight the infection, but to be sure we were whisked downstairs for a chest x-ray and another ultra-sound. Fortunately Payton did not have a perforated colon and would not need to undergo emergency surgery. In fact, later that day Payton started feeling a little better and when Dr. Heime came back to check on Payton, he remarked that he looked like a different child and was very relieved that he was doing much better, as were we. Slowly, the ascites Payton was experiencing has begun to subside and his stomach is looking normal again. As he has steadily improved, Payton is back to his mischievous self, throwing bowls of hot noodles, peaches, and many other items of food onto the floor much to the chagrin of his parents and the various housekeepers.

Unfortunately, because Payton contracted a fungal infection, Dr. Shelton from infectious disease recommended that Payton have his port removed in case any Candida sp. was hiding there. This seems to be standard procedure with the contraction of fungal infections since they are notoriously difficult to eradicate. Payton had his port removed last Wednesday and had a peripheral IV until he had another port placed on the other side of his chest the following Monday.

Now that Payton is feeling much better we will have a few days to go home and allow Payton’s neutrifils and platelets to recover before we have to start another round of chemo on Friday. What has become painfully obvious to us and the oncologists is that the regiment that Payton is on is hitting him too hard. That being said, Dr. Bowman has been in contact with the oncologists at Children’s Oncology Group to discuss how to modify Payton’s treatment so that he won’t be at such a high risk for serious infection in the future with upcoming treatments. Dr. Bowman has suggested that they drop the doses of some of his chemo drugs by about 40% and see how he does. Fortunately, the fact that Payton has already had two chemo treatments at the full intensity will serve him well, since they want to hit the chemo hard and fast particularly at the beginning of treatment. We are therefore hopeful that the reduction in dose of several of the chemo drugs included in Payton’s regiment will lessen his chance for serious infection and will still be effective in ridding him of any remaining cancer cells.

During our stay here we have been amazed by the many other children and parents that we have met. Like little Hector who is only 11 months old and has leukemia. He races down the halls in his little walker late at night as his tired mother Michelle follows him around anxiously waiting for him to “wear himself out” so she can get to bed. Little Illa, who is almost 2, has already undergone a year of chemo for neuroblastoma and has had to go to the ICU for 5 days because she is having heart problems. Her mother Sadie walked her around the halls in a wagon for several days before having to take her to the ICU and looks completely drained emotionally and physically. So many sad situations and struggles that many of the children and parents here have to endure, but also a lot of courage and determination. Quite an amazing situation it is to be on the “chemo floor” of a children’s hospital, when you feel both blessed and guilty that your child has a highly treatable type of cancer with a good prognosis. If that doesn’t put your life in proper perspective of what really is important, then I don’t know what else would.

What an experience this is all turning out to be. We are thankful for all our blessings. We are so proud of Payton for the strength he has shown. We are also proud of Savannah and how she has been strong as she has been away. We look forward to seeing her again soon and all of us being together again. We are so grateful for the continued support that has come from so many people. We feel like there is such a long way to go, but at the same time we have already come so far.