Big Battle for a “Happy Little Guy”
Charlie Smith is a Riley Hospital patient who was diagnosed with neuroblastoma last November. I have greatly enjoyed participating in his care because of this family's attitudes and love for Charlie. Despite all of the challenges with chemo, his feeding difficulties and infections, Charlie is such a happy little guy who wants to play and be a normal kid. His parents have been exhausted at times, and had to be frustrated with the situation, but have really tried to keep Charlie's life somewhat normal despite all the time they've spent in the hospital.
A few weekends ago when I was rounding, Charlie and his dad were playing with surgical gloves blown up like balloons, and batting them around the room and "shooting" at them with toy pistols. Charlie was still rather puny at the time from his transplant chemo and got tired quickly, but he was smiling from ear to ear and having a ball. I think his Dad was enjoying time with his boy, too, despite being stuck in the hospital. It just seemed like a thing that could have happened on a Saturday morning at home, rather than in the hospital, and it was great to see.
Charlie had an excellent response to his initial chemo and surgery; at the end of 5 cycles of chemo his Curie score (a grading scale of how much tumor is present on a nuclear medicine scan) was 0, which is undetectable. He has had one of his two planned autologous stem cell transplants, better called high dose chemo with stem cell rescue. High dose chemo is given to eradicate any remaining microscopic tumor.
With this treatment, we are essentially wiping out Charlie's bone marrow and rebuilding it from his frozen stem cells―twice. Unfortunately, the immune cells in our blood, which remember our previous infections and vaccines, don't survive the cell freezing and thawing process very well. When kids like Charlie recover after transplant, they essentially have the immune system of a baby, with no immunologic memory of past infections or vaccines.
We require all kids post-transplant wear an N-95 mask when not in the house or in clinic to prevent infection. We ask that the kids not go to public places like stores, movie theaters or church since you can't control who you might encounter who is sick and can put the child at risk outside the home. This social isolation, mask wearing and stringent hand washing is particularly important now with the COVID-19 pandemic, since kids have no ability to fight off the virus. In fact, the "stay at home" restrictions for most of us during the COVID-19 pandemic are essentially what we recommend for all of our patients post-transplant.
While Charlie still has a long way to go with his treatment, given his response so far I am very hopeful that he will continue to do well and be cured of his disease.
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