We are at a weird crossroads with my daughter's treatment plan. We have to wait until the next post-surgery, post-radiation MRI to see where we are with her disease. Right now, that isn't scheduled until mid June! They want to move it sooner, but scheduling is so tight. In the meantime, we got the pathology back on the new tumor. It still has H3K27M, FGFR1, and NF1, but added a PI3K mutation.
With this new information, I spend a lot of my free time googling mutations and inhibitors. I'll stalk the online groups to see what medications or trials other people are doing and then google those to see what they are for. I've read so many different articles that I really need to be keeping better track of all the information. There is a constant underlying feeling that I am missing something that could work for her - or maybe that I stumbled across it and cannot locate it again.
Brain cancer research and treatments are all so complicated. There are so many different mutations and so many different drugs and trials that target different things. No two patients are exactly the same - same mutations, same tumor locations, same age, same symptoms. I'll find out about someone who had success with one treatment and then hear about 5 others for whom it didn't work. I do think that as a parent I have an obligation to research all of this even though I am not a doctor. I have one patient to focus on, and perhaps that singular focus can uncover something our doctor hadn't considered. On the other hand, as another parent wrote, maybe this is all the arrogance of love that I could know better than our oncologist who has been practicing and teaching for over a decade.
In addition to whether or not something will work, there are also the side effects to consider - hair loss, nail infections, skin rashes, vomiting, nausea, diarrhea, liver and kidney toxicity - and whether that would be worth it for more months and more time. An adult can decide what they are willing to put their body through, and while we will heavily consider my daughter's wishes, we have not given her all the information about her disease. I mean how do you tell a 9 year old that very few children with this diagnosis survive longer than 2 years?
Before spring break, my daughter's school had field day. Because she was still healing from surgery, I knew that she wouldn't be participating in most of the events. I went anyway because I had to check her out early for radiation. I sat on the sidelines and watched all of the other kids run their races. I couldn't help feel envious of these kids who looked so healthy and their parents taking pictures and cheering them on. I wanted the uncomplicated joy of watching your kid do something, even if it's just a potato sack race. I don't know that I will ever experience that again.
Another favorite
Maggie Rogers, "Light On"
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