My brother called early this morning to tell me that he didn’t sleep at all last night because his 4-year old daughter told him that the other kids won’t play with her at recess.
She can’t run and jump like the other kids due to the location of a brain tumor. I told him that we ought to take her to the pool because she is a good swimmer. That seemed to lift his spirits some. He said that once you reach a certain age, running and jumping aren’t the primary form of play. That’s certainly true. And we all know that 
we have certain types of play unique to only us (like fighting with PBMs). That stuff is difficult to explain to him.
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The nature of disability is probably that people overcompensate for the stuff they can’t do and it all works out in the end.
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That sucks. I’m trying to think of what passive games 4 year olds play… marbles, tic-tac-toe with chalk? Uno? Maybe someone with kids could chime in here. It’s been way too long since I was 4. 
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She jumped the other day. We think she did it on accident. When she was speaking to the chemo nurses she shouted, “My daddy took me camping!” and she threw her arms up in the air and jumped in the air with excitement. They say that the kids develop in leaps and bounds after chemo ends, so maybe it’s all not as set in stone as we were led to believe. We are down to only 6 more months of chemo (total of 12 months) and are seeing good progress. My brother and his wife felt really good about it.
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That’s encouraging. Most brain tumors don’t respond to chemo because the drugs are filtered out by the blood brain barrier. So she must be getting one of the very few that can be effective. Most brain tumors that little kids have are benign, but of course the cause all sorts of crowding and pressure issues so in most cases they use surgery and radiation. I’ve been out of the chemo world for 10 years so it might be different now, I can’t remember seeing a young child on chemo for a brain tumors,of course they do for other types routinely. Cancer care has take a very sharp turn to biologic treatments and cures and although chemo is still the number 1 treatment for metastatic disease, most research is looking at dna and biologic paths
This must be a very rare case, hoping she continues to improve
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That’s interesting, Timothy. Thanks for perspective. I don’t actually know much and am getting info second hand from my brother.
I heard (take it with a grain of salt) that they try to avoid radiation on young kids because it impacts their ability to have kids down the line if they survive. They don’t know if its cancerous because they can’t get a sample. It’s very close to the spinal cord, so surgery may not really be an option. They discovered it because her balance, gait, ability to hold a pencil were being impacted. The daycare noticed she was slow to reach certain milestones so they sent a social worker to run some tests. The social worker said she had never seen a kid test so high on the cognitive tests and realized that there was something else at play. We were very lucky that they were all so knowledgeable about kids. We never would have recognized anything was wrong until the thing had grown and caused further damage to her mobility. We were very lucky.
Feeling terrible today about the little kids that were harmed & killed in the active shooter event today in south Minneapolis. The whole city is just heart broken. I used to drive past that school every day on my way to the museum where I worked and it’s a great neighborhood and a beautiful little school.
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Yes that type is likely the congenital type that wraps around the brain stem and is almost always benign but still problematic as it crowds the brain. So I’m surprised they would give her chemo without knowing the type. And it’s unlikely to be metastatic. Again I’m out of the oncology world now, so maybe there is something I don’t know about.
And yes radiation can cause issues like early puberty and slowing growth, but really works well to treat the main issue.
I hope she’s getting better. And yea too many shootings in our country. Kids become targets, don’t know the solution, but what we are doing isn’t working
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