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Posts: 1
Joined: Dec 05, 2012

Neuroblastoma Experience

Posted by @cwalker2300, Dec 5, 2012

Hello Everybody,
My name is Cameron Walker and I am currently a senior in high school taking an anatomy course. Although I do not have neuroblastoma or ever had anyone close to me have to suffer with this disease, I am very interested in learning more about the disease and its profound affects on not only the lives of those directly affected, but the families as well. Because neuroblastoma primarily affects young children and toddlers, I am very interested in hearing stories from family members or survivors of this disease in order to spread awareness. If anyone is willing, would you mind answering the following questions? How was it to first hear that either you/ or your loved one had been diagnosed with neuroblastoma? Was it hard to tell the rest of your family? What was the response from your friends and community? What was the hardest part about the entire process, from diagnosis to treatment? If you could go back and do anything differently, what would it be? Any response would be extremely helpful. Thank you all so much!


Alex Simon

Posts: 179
Joined: Feb 08, 2011
Posted by @alexsimon, Dec 12, 2012

Dear Cwalker2300-
This isnt a patient story – but here is some more factual information for you –


Posts: 3
Joined: Jun 21, 2013
Posted by @strappiesandals, Jun 21, 2013

My son was diagnosed as an infant. Treatment at Rochester St. Mary’s in Minnesota. It wasn’t difficult to tell our family as we spent a couple weeks in the hospital doing tests. We knew it had to be a very specific diagnosis to take so long to pinpoint. As a mother of this baby I really didn’t know what to think of this diagnosis. He has nothing externally wrong with him, he’s smiling and playing like normal and there we sat in a cold dark hospital room. Our small community was not supportive or helpful in any way. Fortunately I was to busy in the nursing apprenticeship to care about that. The hardest part was looking at my happy baby and knowing the pain he was in. I felt so badly thinking that he was used to hurting so much that it was normal for him. If I could do anything differently I would have bought a brand new vehicle right away. With all the traveling I still do I wish I hadn’t been so concerned about money and change at the time.

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