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.