My Son's Medulloblastoma Tumour

The way it's been put to us seems to suggest that "all high-dose chemo must have stem cell replacement".

So it's got my obsessive mind thinking that the people I talk to who haven't had the stem cell replacement, haven't actually had the high-dose chemo.  But that may be me going nuts I suppose.

What do you think?

Apparently it's to protect the bone marrow, if he needs high- dose chemo. It all depends on what they think the patient needs. I had higher dose radiotherapy than he is going to have, but that's what they thought my case needed. If they haven't seen the histology yet, they wouldn't be zeroing in on his unique tumour situation yet. I would imagine it's the requirement of the treatment protocol they plan to use rather than anything specific to him. I don't think they gave me high dose chemo, Just high dose radio.

limasierra, you've been an awesome source of information, help and comfort. 

Thanks for taking the time to reply to my questions.

Best wishes

Huw.

Hi Huw,

As a fellow father of a child with a brain tumour, my heart goes out to you.

I remember that feeling of devastation well. Be strong my friend. There's much hope and plenty of love out there.

My daughter has a lower grade tumour. But if you want to get some idea of what may lie ahead, I've written a book based on our story. It's available here: https://glowkeeper.gitbooks.io/my-abi/content/. I hope it helps, somewhat.

I wish you all the love in the world. I'm here if you need to talk....

Steve x

Thank YOU. My heart goes out to you.

Big hug,

Lima

Hi Steve

Thanks for your reply, I really appreciate it.

Empathy from someone who''s been through this awful process helps me a lot.  I'm not an emotionally strong person, and, like you, my children are my life.

I'll definitely check out your book.

Thanks once again, my friend.

Huw.

My son has medulloblastoma, diagnosed Nov 2016, he's 13 and the treatment plan you have described is almost identical to ours except he is only having four rounds of high dose chemo lasting around four months. My son is just coming to the end of his 6 weeks of radiotherapy and is doing well. A little bit of nausea and hair loss but that's all so far. If you are on fb there is a group for parents of kids with medulloblastoma. It is good to hear the success stories. Equally though it goes without saying there are some not so great posts but it is good to be part of a little community that will understand you better than anybody else. Good luck with your sons journey 

Natalie 

Hi Huw,

I didn't think I was particularly strong either, but I have managed, somehow! Indeed, I believe we all have a capacity to dig deep and find strength from somewhere.

Steve x

m.facebook.com/story.php

I hope this link works. I shared it with my friends and family to help them understand a little how I was feeling. I was getting sick of people telling me how strong i was when i dont feel strong at all. I feel trapped in a nightmare that i cant escape from. What is strong is the love for your child.

Natalie x

Unknown said:

m.facebook.com/story.php

I'd like to read that. Unfortunately, I'm not on Facebook :(

Unknown said:

I feel trapped in a nightmare

Unknown said:

What is strong is the love for your child.