While I was doing the research for this article, and getting fairly desperate to find out what a real family goes through when a child has Neuroblastoma, I came across the following on a Neuroblastoma support group forum As I read it, I realised that I'm not qualified to write this article; the only person qualified to do that is a parent who is going through it, or someone who's had the disease and survived it.
And so, I decided to just let these two people speak; 'Lovebird', the parent, and 'Mariah', the survivor.
Lovebird..
23 November 2009
"My daughter was diagnosed one year ago with neuroblastoma stage 4 high risk and was given 20% chance of making it. WOW!!!
She was 5 at the time, after one full year of treatments and hospital we are still seeing signs that it may not be over, her cancer has metastasized all on the left side of her upper body, the main mass was 9 inch long by 3 inch length by 3 inch thick, she had a mass in her neck the size of a small ball and has it around her vertebrae.
She also has a mild mental retardation which we learned about when she was 4 years old so all this has been quite a challenge to her and us.
Right now she is having more ultra-sounds for unexplained weight gain (2,3kg) in a week, her spine is getting curvy and she always has blood in her urine, two bone marrow biopsies show two different result and I dont know what to think anymore... she is finishing her isotrenoin treatement in December."
Mariah...
30 January 2010
"Hello, my name is Mariah, and I am currently 30 years old. I was diagnosed with neuroblastoma at age 1, and there was no cure at the time, so I became an experimental patient.
I had years of chemotherapy and radiation (I remember some of it!!), and it worked and I have been pronounced cancer-free for almost 25 years!
When reading your posting, I noticed many similarities between my cancer and your daughter's. My tumor was very large, and was wrapped around my aorta and my spine. Due to the radiation and damage to the spine, the doctors told us that I would have scoliosis, but they did not know the severity of it. I had very severe scoliosis, and have had multiple surgeries on my back, including fusion of almost the entire back.
I have chronic upper and lower back pain, and I have difficulty walking long distances - I use a cane for short distances and a wheelchair for long ones. The pain is very severe, and I have had so many secondary effects from the experimental treatments. In fact, I am writing a book about my lifetime in the medical field(!) and how I deal with it.
Overall, I have been able to do lots of things in my life, despite everything, and I am happy to be alive and have a wonderful husband, family, and friends support system. Although I am unable to use my education, I have a B.S. in Political Science, spent 1 semester in law school and then got my Master's in Business Administration instead. However, I also have 1 1/2 years of biology, chemistry, and anatomy and physiology education, too...."
Lovebird
31 January 2010
"My daughter is in recurrence and since December we've had two options:
1- do nothing and hope she will live more than a few months or
2- be part of palliative care and try more chemo and radiation to control it so she gets to live as long as possible because there is nothing more to be done, the tumor is coming back at the same place right now, it's surrounding her left lung, on vertebrae, and abdomen.
All we have is hope, hoping she will be stronger than the neuroblastoma but no matter what, we've been told that it will always come back because of the genetic study they did on the tumor when she had surgery.
We already in the past went through dialysis because the drugs they use are so strong. The side effects can be amazing so we have to watch for that. Her body is still fragile from all the strong drugs, strong radiation and her stem cell transplant so I dont know anymore what to think..."
All I know is that this mother, Lovebird, and her daughter, are going through a private hell that can only be understood by someone in their situation...
And I know enough to be grateful to the Mariahs of this world, spreading a real, first-hand message of hope.
Note: I've done a bit of editing for clarity and brevity's sake, the original page can be found at http://www.mdjunction.com/forums/neuroblastoma-discussions/introductions-personal-stories/1023070-my-little-girl-has-neuroblastoma-she-is-6-now
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www.mdjunction.com is a vast collection of online support groups; there are 65 groups for cancer alone. See http://www.mdjunction.com/support-groups/cancer/
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