The other day vampdaddy tweeted about a post titled ‘I know to many names’ and my gut dropped reading the #cancersucks tag meant I knew it wasn’t coming back up. I clicked on the link and confirmed my fears that another young life had ended due to cancer, earned his angel wings as we all too frequently say. I understood the meaning of his title because I too know too many names, Names of kids that fought cancer and lost.
My son fought cancer twice and beat it both times and now has been cancer free for 2.5 years and off treatments for 1.5 years. At age 3 and a half he was diagnosed with neuroblastoma a childhood cancer. Needless to say we were devastated by the news. The next nine months were spend in the hospital or Ronald McDonald House. He went through six round of heavy chemo, 3 surgeries, mega dose chemo and stem cell rescue and 13 rounds of radiation. With the stem cell rescue they took some of his own stem cells and frozen them, wiped out his bone marrow and then gave him back his own stem cells to regrow his marrow. He was N.E.D (No evidence of disease) for a year. Then it came back. Fortunately it was a quarter sized spot and localized. They hit it hard with radiation and and more chemo. Again we got to N.E.D and have been that ever since.
I feel like I’ve been holding this back partially because I was afraid it would be using his history toward my own end, partially because it is hard to explain everything. That last bit is part of why I feel I must. I have stories that only make sense in the context of his battle. He spent over 100 overnight stays in the hospital. He tends to be a night owl and would get paired with teenagers that stayed up as late as he did. That lead to movie watching that was not entirely age appropriate from the Jurassic Park movies to all three Smokey and the Bandit movie and many more.
It also affects my life today and that is something I would like to share but it needs to be in context. Every six months we make a trip to BC Childrens Hospital for three days of tests and scans to tell use hopefully that he is still cancer free. These trip are extremely stressful to the point that we have decided that only one parent goes with him do reduce the stress induced conflict with to many people with to many way of dealing with stress. We have decided to fly rather than drive again to reduce stress.
A lot of of these families have blogs, quite often on Caringbridge.com and you end up following the families that you meet in hospital and later following people that commented on families that you follow. You all know how that works. Eventually you are following kids from all over. Sometimes they stop blogging because treatment is done but sometimes its because the child didn’t make it.
Last week Vampdaddy posted a link to little Declan that had passed away from a brain tumor just shy of his 1st birthday and I was crying. I am crying as I write this. Earlier that week another girl that I follow lost her battle at age 12. Another, aged 4 is losing her battle. Doctors have said there is nothing more they can do. She is on enough pain medication to cause hallucinations but every day she has left to spend with her parents is precious beyond words.
I will write more on this as it comes up. VampDaddy is raising money for cancer research so you can go check that out.