Our baby was diagnosed the day before thanksgiving in 2020 at 14 months old. He also had metastasized disease in his spine. He was in remission starting in July 2021 for 3 months when he was diagnosed with relapse in late October 2021. The brain tumor reoccurrence was not in the cerebellum like his original tumor and was in multiple spots in different parts of his brain.
He had continued tumor progression through relapse chemo and now that we know it is stable on scans as of May 2022 but showing signs of progression with symptoms. He is also starting not to tolerate chemo as well but is still too young for radiation. Our hope is radiation at 3 yrs old but it will depend on a lot of factors.
He has what’s known as group 3 medulloblastoma which is one of the less favorable sub-type groups. He has 3 shunts because of cancer, one for hydrocephalus one for subdural brain bleeds from the chemo, and one for direct brain chemo.
I was a full-time college student excepted to go to medical school and trying to finish my bachelor’s degree. I had to stop to care for Hudson. My husband had to take the entire treatment (8 months) off work because his needs were a two-parent at all times job, Now he takes time off but it’s less since they only do in-clinic chemo once every 2 weeks and the rest is home chemo. We had to send our oldest son, who is 11, to stay with family friends while we were in the hospital and when we travel from Spokane to Seattle Children’s Hospital. Luckily he goes to a small private school where they have been able to help him cope.
He has literally had cancer in his tiny body for every birthday he’s had, He turned 3 on September 8th and unfortunately will not be cancer free. He has been through so much!
Hope session by Heidi Heaphy Photography | Facebook | Instagram