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Newborns with Neuroblastoma

PoeDunk
0 Recommendations

Just wondering if there was anyone who had a newborn with neuroblastoma (either your a survivor, or have a child with it or whatever)

Right now my son is about to turn 4 months old. He started being tested a little after he turned 2 months old.

He has 4s which they say in newborns is good, because it reacts differently on newborns than it does on toddlers and older children.

It *should* die on its own without any kind of intervention from chemo or drugs, which would be wonderful.

His adrenal gland was affected first, but that marble sized mass has died.

Now his liver, on the other hand....is filled with tumors. Thankfully, at the moment the liver is the only active tumors, there are no tumors anywhere else, it has not spread. Which I hope and pray it does not.

So I was just wondering if there was anyone out there with a newborn going through the same thing. I would love to have someone to talk to. There is absolutely no one around where I live who is going through this, and I feel quite alone sometimes and I don't know what I should do.

Right now my baby doesn't have a clue as to what is going on, he won't remember this early stuff, but I will never forget what we've been through. (He has enough of a clue though that he HATES hospitals, doctors and nurses though! And I don't blame him).

Thanks,
Mae

Explore topics in this discussion:

Leukemia Neuroblastoma

4 replies

Abismum

Hi Mae,

I am so sorry that you feel so alone - there are others that know what you're going through and hopefully as you meet more and more of us that feeling might be reduced.

My friends son was diagnosed with neuroblastoma at 4 months old. He was treated at Birmingham Children's Hospital and did have chemo. His had spread from his groin to his liver and lungs. He is now 4 years old and starts school next week. There is hope.

We are both in a group on Facebook - Poppy Fields Mums and Dads, along with lots of other parents.

I wish you and your son all the very best,
Sarah

Maxsmummy

hi mae,

my son max had neuroblastoma too, so i know what you are going through. we felt very alone too, everyone else seemed to have leukemia, and neuroblastoma wasnt something anyone had heard of.

it takes a while to settle into this world that youre in now, but there ARE others out there who are going through this too.

i recommend that you join Facebook. it has proven to be an invaluable tool and source of support. there are many neuroblastoma groups on there, and you will be able to read what others have gone through and talk to mums in your situation.

there is a group that has a list of families contact details in, and there is at least one other family in there who has an infant with 4s.

here is the link
http://www.facebook.com/home.php?#/group.php?gid=102112264199

i hope this helps, please contact me if you want any further advice or information.

xx

Cherime

hi! keep a journal for His treatment, to help you to focus. Be strong. God Bless You.

PoguesKiss

My son is not a newborn but we found the neuroblastoma a month after he turned 2.
We are in month 5 of treatment.
I'll keep you in our thoughts.

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