4 months old daughter with intra spinal tumor c3 to t3

[hope]

My baby was diagnosed with a huge c3 to t3 spinal cord tumor when one month old. It's a rare tumor, lipoblastoma, no doc had experience in where I live. NS said it was impossible to remove so they had only decompress the pressure as much as they could. The latest MRI show tumor did not shrink at all. Im surprise and devastated, she had improved so well after surgery. Doc dunno what to do anymore. Any parents out there that can share experience. This is so heartbreaking. I dunno what we could be facing.

[gordy1]

Hi, sorry to hear your news.

Are you in the US? If so, I have a friend who took her daughter to Texas Children's hospital to operate (successfully) on a neuroblastoma. I will find out a contact name for you. Both my friend and I live in Australia, but we both came to the conclusion that the US has the best skills and knowledge available....

[hope]

Hi gordy, unfortunately we do not live in US. I have been reading different posts and yours too, I get the sense that sct is so rare, perhaps only NS in US can handle best.
As a parent, can you share with me things you would have done differently or we should be aware as we walk down this difficult path ?
We proceeded with surgery 5 days after diagnosis, without getting a second opinion. It was just too urgent and basically no other doc in the area can handle. We have not been told what we could be facing except there is no cure.
Now seeing the post op MRI, with the terribly huge tumor still there, we dunno what's next. Doc just ask us to look for second opinion.

[gordy1]

TCH contact is the chief of division of pediatric surgery....he specialises in oncology surgery. His name is Jed nuchtern. I would assume your doctor could find out his contact details for you.

Alternative contact is Dr Jallo...I'm sure you will already have found lots of references to him on this site.

I would contact both of them, and send MRIs.

In terms of what we would have done differently:
- Found this website (I don't think it existed back when we needed the advice).
- Asked for our NS experience of operating on exactly the same type of tumour.
- Asked for a second opinion from the most experienced people in the world.

Whether the outcomes for my son would have been any different I do not know. Going to the US for treatment costs in excess of $100k. Would we have spent that money back then, when the local NS said he could successfully perform the operation? I don't know.

Ask your doc/NS what your country's policy is for paying for you to go overseas for treatment. In Australia, the government will pay for treatment overseas if the treatment is considered to be curative, and cannot be carried out successfully by Australian doctors and/or equipment. Alternatively, fundraise to raise the money.

On a positive note for you, your NS doesn't seem to have caused any obvious damage in your child's initial operation. That is good.

[hope]

Thanks for your quick responses. we will surely keep your advice in mind. I read your story, you are a very brave parent. Sometimes I still don't know how to cope with this fact, I just pray and ask god to give us peace.

I saw you did eventually went to john Hopkins, so are you happy with the outcome? The cost is a great problem, but most importantly can my daughter be cure. We are Canadian but currently not in Canada. I have emailed Dr jallo and hope he can look at the MRI.

You are right about the fact the first surgery at least did not do any harm. In fact it's been a miracle with the size of her tumor, she has improvement after surgery. But our feeling is on roller coaster everyday, some days she move , some days not. She is still a baby, unlike older kids you can test her motion effectively.

Doc has primarily told us they don't know what else can be done, but will see us again on Wednesday to let us know what options are available. Immediate threat now is since it hit c3, we are told she will have problem breathing.

After reading many threads, I get the sense that radiotherapy is no good for sct. Im new to this, why cannot do chemo instead? Or is chemo worst? Thanks if anyone can shed some light. But we were also told her type of tumor, both chemo and radiotherapy is not an option.

[gordy1]

Thanks, but I'm not brave - my son, on the other hand, is!

Time will tell with the full outcome from Johns Hopkins, but so far, so good. Remaining tumour nodules have either remained stable, or even shrunk (which was not expected by us). Going there was definitely the correct decision, for us.

Regarding radiotherapy (RT) or chemo, I assume that the response will vary depending on the tumour type, and I have no experience of lipoblastoma. But my understanding for SCTs is that surgery is always the recommended way forward. Follow-up treatment with either chemo or RT is an option, albeit we were told that chemo is only effective on growing tumours (ie won't do anything for a stable tumour). RT for us was the option we chose in preference to any more surgery on my son, as the surgery would have been to remove a lengthy section of his spinal cord, effectively moving his region of paralysis upwards - something that we did not want to contemplate, particularly as that would have been the "best-case" outcome.

Others may have different information about chemo and RT for lipoblastomas.

[funnywalk]

My heart goes out to you brave parents and your even braver babies. Praying, hoping and wishing for good outcomes for both of your children. Love, FW

[von]

I have a spinal issue as an adult, but I cannot even begin to think of how I could deal with my child having the same kind of tumor. I wish you the best, hugs.

[hope]

Thanks all. Just a bit of update, she is now almost 6 months, we are facing the uncertainty whether she is not able to sit or roll over is it due to her tumor or just simply development delay. Nobody could answer, they said they have never seen an infant with sct and this big, no prognosis can be predicted.
Still searching for more opinions, our NS and another two we consulted suggest no second operation unless she is declining. from the MRI images, it is still huge from c3 to t3. we know it's impossible to remove, at best just debulk partially. But can't really understand is it really ok to let this big tumor sit there in the long run if it is a lipoma. Currently it is not a simple lipoma , but hope it may mature into one when baby is older. We remain hopeful.

Also anyone had experience with using laser to remove the tumor. Our NS said they don't do, it's too dangerous.