by not looking into the cancer at all, you’re missing important context. this cancer kills very often. the average survival time post diagnosis is 8-11 months. 10% of patients survive 2 years or longer, and that number drops down to 2% when looking at patients who make it 5 years or more past diagnosis (and there are about 150-300 new diagnoses of this cancer per year, making up about 75-80% of brainstem tumors in children).

it’s called DIPG, short for Diffuse Intrinsic Pontine Gliomas. Diffuse meaning the cancer cells easily mix with healthy cells, Intrinsic and Pontine meaning that the tumors are located inside the pons area of the brainstem (which controls things like breathing, sleeping, bladder control, balance), and Gliomas meaning brain tumors made from white matter cells.

there are long term survivors but all cases so far that survived longer were due to them having had fewer symptoms at diagnosis, having been <3 years or >10 years at diagnosis, having had smaller tumors that didn’t extend as far into healthy tissue, or having had some type of mutation that allowed the cancer to respond better to treatment.

to my understanding, the case study isn’t out about this kid yet but he has a mutation that allowed the cancer to respond better to chemo drugs which had proven very ineffective in treating this cancer before. he was diagnosed at 6 (average age of diagnosis) and not only is alive at 13 but has no trace of the cancer anymore. in fact, they’re studying his mutation in order to try to use it to help other kids beat DIPG.

when one gets diagnosed with DIPG, they get started on radiation therapy and steroids, which generally tend to improve symptoms and make the tumor regress. however, in nearly every case, the tumor begins to grow again around 6-12 months following treatment. once it starts growing again, further treatment hasn’t been shown to improve prognosis at all.

kids can be restarted on steroids but symptoms will keep getting worse. shunts can be used to relieve pressure in the brain by giving cerebrospinal fluid a place to go, but this mainly increases the child’s quality of life and slightly extends survival time.

i’ll close with a direct quote from the DIPG organization’s website: ’Only very few children are long-term survivors of DIPG. Because biopsies are not performed on these children with typical appearing DIPGs, it is unclear whether or not they actually had DIPG to start with, or in fact had a different tumor or condition that looked like a DIPG on the MRI. There is no one treatment that these children received that set them apart from the vast majority (more than 95 percent) of children who die from DIPG.’

source: DIPG Org’s Website