My nephew has high risk neuroblastoma

DinaL

Hello everyone,

My nephew who is 8 years old has been diagnosed with high risk neuroblastoma stage 4. He needs to start aggressive chemo and radiation treatment as soon as possible, but even with treatment, his prognosis is below 40% chances of survival. His parents are set against starting treatment, and are looking for alternative solutions. They believe the chemo will just cause him unnecessary suffering but won’t really help. I feel that if they could meet and talk to a neuroblastoma survivor or survivor’s parents, it might make it tangible for them that treatment can actually save their son. Anything I tried to convince them to stop wasting time looking for alternatives that don’t exist didn’t help. I feel for them, they love their son very much and trying hard to do the best for him.

So the reason I am writing this post is to try to find a person who is a survivor of neuroblastoma or a parent of a survivor who will be willing to talk about their experiences to my nephew’s parents. Also, any information about organizations or societies whom it would make sense to contact on this would be greatly appreciated.

Thank you all very much!

All best,

D

Debra89

Hi my daughter has high risk neuroblastoma stage 4 cancer and is having treatment since October 2024 she is doing great if u wanna chat message me

DinaL

Hello Debra89,

Thank you for your reply. I am so glad your daughter is doing well! Luckily , sinceI posted the message, my brother and sister in law decided to start treatment for their son at the children’s hospital in Barcelona. He started treatment in November. He is in the midst of it, but is doing great so far. Will be happy to chat more. Again, I appreciate your response and wishing full recovery to your daughter!

Dina