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Ganglioneuroblastoma

marcyjo2
Posts: 2
Joined: Nov 2008

Hi, I'm new here.
My daughter, age 3, was just diagnosed with Ganglioneuroblastoma. Last week they removed a large tumor the the posterior side of her chest. The finding was complete luck, I have a very through ped doc who was ruling out pnemonia because she had been vomiting. (Oncologists do not believe that the vomiting had anything to do with her cancer)
The results that we have gotten back so far have been good, the histology is favorable, the bone marrow had no disease, and there was no gene amplification.
We are scheduled to have a bone scan and a MIBG scan next week.
I am so scared and am looking to talk with others that have been on this journey who can offer me words of advice and encouragement.
The worst words I have ever heard is that my baby has cancer. Any information you have would be appreciated.
Thanks,
Marcy

Mysterial
Posts: 9
Joined: Jan 2009

Hi Marcy,

I'm an adult survivor of childhood cancer. I'm 26 now, but I'm not far removed from my experience with cancer. I was diagnosed at age 10, and I know my parents were very worried and scared about my health. My dad told me that he wished he could have traded places with me, so he was the one dealing with cancer instead of me. My mom took a medical leave of absence in order to take care of me. I have a sense of what you feel. You're strong, you have the life experience, and you wish you could take that cancer from her and beat the living daylights out of it. She's young, she's your child, and you want to do everything possible to make her better. I understand. And I sincerely hope that everything goes well for your daughter's treatment. It sounds like her cancer was found early, and that is favorable, along with a clear family history.

One piece of advice I was given during my treatment was to take things one day at a time. It's not the easiest thing to do when your mind is racing a million miles a minute and you just want to be free of the whole stress and worry of cancer. But slowing down and realizing that I was okay today, and I was okay yesterday, helped me feel that tomorrow might not be so bad. And if I was having a bad day, then tomorrow would be better. It's a lot easier to deal with when you're not stressing out about next week or next month or next year. My parents found support within the family and close friends, as did I. My mom has a small group of friends that meet for Bible study and I know that helped her quite a bit.

It might be helpful to ask your daughter's doctors if there are any support groups at the hospital or other parents who also have children being treated there. My hospital had a few parent and sibling support groups. Also, there are some good resources on this website--the I Can Cope link, and also a local branch of American Cancer Society might be of some help.

I hope this has been somewhat helpful. I'm know I'm not in your situation, but I do have a lot of experience with cancer, and I thought you could use a reply. I wish you and your daughter all the best. :)

mariajoseolaso
Posts: 1
Joined: Feb 2009

HI, I live in Southemerica.
Two years ago when my daugther was three years old we went to doctor because of a pain in her ears.
When the doctor examined her, he found out that she had also something in her abdomen that had nothing to do with the other pain.
It was a ganglioneuroblastoma. The results that we have gotten back have been good, the histology was favorable, the bone marrow had no disease, and there was no gene amplification.
After surgery and chemotherapy therapy she is OK. She is now six years old and we only control her with magnetic resonance every six months and everything OK.
The prognostic is very optimistic.
Sorry for my english, my language is spanish...
I agree with the guy who wrote before me, you have to live day by day, always the present moment, soon you won't believe those days are gone!
God bless you and your baby. Perhaps you will notice He is always close to you in those moments.

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