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HeebieMcJeeberson t1_ixxyev5 wrote

She was cured, but frankly it's not a happy story.

At age 10 she was diagnosed with a medulloblastoma after an optometrist noticed an enlarged optic nerve and recommended an MRI. Two weeks later she was in surgery, followed by 2 months radiation and 6 months chemo.

In a nutshell, the combination of surgery, radiation, chemo, and the tumor itself took a huge toll on her. She was an unbelievably great student, ahead at least 2 years in everything, a super-optimistic problem solver, with tons of friends. She ended up with balance problems, which eliminated ballet and other kinds of dance. Double vision and nystagmus made reading (which she LOVED) too difficult to be enjoyable anymore. She lost her exceptional math ability - which she really tried to regain but it just wouldn't come back.

Except for math her higher functions stayed intact - keen reasoning skills, a huge vocabulary and other things - but because of moving and speaking more slowly than normal, I think people underestimate her mind. She went through middle school and high school as the gimpy kid who couldn't keep up, so almost none of the kids talked to her - like ever - which was very depressing after being pretty universally liked at school. As an adult she has tried to take a few community college classes, but with low stamina and other problems she could only take one class at a time, and even then could barely pass, so she finally abandoned education and is physically not able to sustain a job. At age 29 she is on SSI and spends most of her time in a recliner watching TV and playing on her computer.

She has a few friends and does socialize a little, although her immune system is weak so she has been extra careful to stay away from people most of the time during this Covid crap.

tl;dr: she was a standout kid in every way, with unlimited potential, and basically the cancer and/or the treatments pretty well fucked her over.

Hope this didn't ruin your day.

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Dizzy-Promise-1257 t1_ixy8oll wrote

Is there nothing they can do for now, seeing as it’s been nearly 2 decades, to improve quality of life?

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HeebieMcJeeberson t1_ixy9l4s wrote

You mean for new patients or my daughter? She had the worst consequences they'd ever seen at Seattle Children's Hospital, so her case was an outlier. She was actually lucky to survive - her chances were about 50/50 at the time, but she got into a study for an experimental treatment using a small dosage of a breast cancer drug they thought would make the radiation treatments more effective. This turned out so well 17 ojut of the 18 kids in the study survived. Big improvement over 50/50. But as far as her quality of life now, she's getting the benefit of modern science, checking in with endocrinologists and taking various meds. But the damage has already been done. Fuck cancer.

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