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Joined: Apr 2003

Is anyone here a survivor of Neuroblastoma? I was diagosed with it at a very young age and up until a few years ago I didn't really know any cancer survivors and I have only met one other person who had neuroblastoma as a child only she didn't have the same treatments etc. I thought I would post to offer my support and friendship to anyone who has had a childhood cancer and those who are currently caregivers to children with Neuroblastoma. Please feel free to leave me a message here if you have anything you'd like to know and if you've had experience with a childhood cancer. I feel very fortunate and blessed to be alive and I have made it one of my goals to be an advocate for cancer surviorship and childhood cancer awareness.

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Joined: Nov 2017

I'm sorry to hear about your grandson.  My wife and I are also faced with a neuroblastoma diagnosis with our daughter (she was 13 months at diagnosis, stage 2B).  There are many different prognostic factors that are much more important than stage.  We've learned (through many hours of research) that neuroblastoma is a very wide spectrum disease (ranging from very benign forms that the body fights off on its own to very aggressive forms that don't respond to any level of treatment).  If your grandson was almost 2 at diagnosis, he passed that magic 18 month marker which usually has a better prognosis all around.  HOWEVER, the real things to focus on our NMYC amplification result and histology (favorable or unfavorable).  These will be crucial in the classification of medium or high risk.  The treatment protocol between the two are extremely different.

I'm assuming since your post was back in May, you already havae most of the information referred to above, and have been on some form of chemo protocol since then.  Please reach out if you still need to talk about the situation.  We have gotten into contact with some of the best oncologists and naturopathic oncologists in the US, and it definitely makes a difference in terms of treatment success.  In any case, I pray that the treatment he has received thus far is working well, and that his level of suffering through the treatment has been manageable for him (and his parents).  No child should have to suffer like this, and unfortunately our traditional treatments (poison, cut, burn) have lasting impacts that still need to be dealt with at the end of the nightmare.....


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