I still spend hours researching different types of pediatric brain and spine tumors and stare at Raphael while internally talking myself down from symptoms I'm likely making up - but than again, nothing seems out of the realm anymore - he has a brain and spine tumor disorder. When Ron gets scared or upset my fear multiplies. He's always so steady but every once in a while he lets his guard down and while it only makes my love for him more powerful, it also makes the reality of Raphael's condition more real to me and makes me a little more scared if possible though denial would likely be way worse.
Today after leaving the hospital, (I brought Gus who wore his spider man costume for the entire 5 hours) our oncologist ordered a mri in 3 months and said barring results look as he predicts we don't have to return to Jersey for 9 months (oh and " and enjoy your summer"). I took the boys to lunch and then to the sprinklers at the park out back or our apartment. Came up, made them dinner and stumbled upon a post on facebook about a beautiful little girl with DIPG which is basically a incurable aggressive brain tumor that forms at the base of the brain stem and from what I understand from my internet maddness mimics the symptoms that NF-2 "can" have only very rapidly (average life span after diagnosis is 9 months) and it's horrific. I spent the last hour reading every article I could find about it. It turns out that 1 of the neuro surgeons we met with when discussing options for Raphael's treatment was working on a clinical trial for this rare pediatric cancer. This made me cry. I cried out of happiness that Raphael does not have DIPG and then out of guilt that someone else was enduring this and that I was relishing in my luck. It's such a psychological roller coaster. So while I will do my absolute best to enjoy these next 3 months and try not to think about brain tumors, I can't pretend that every time Raphael coughs while drinking, or trips or makes a funny face I won't feel ill.
So thats where I'm at tonight. Hopefully all will be uneventful and this will be my last blog post for a while and I can get to all of those long over due thank you notes out to everyone that has been so generous with contributions, meals, gifts and love etc. I want to get back to work and back to a routine which doesn't consist of driving to the hospital. I'm excited for the boys to start camp on Monday. Raphael is so sick of me!!!
To end on a hi note I've attached some pics from these last few days. We went away for a few days and had a blast. Swam, watched beautiful sunsets, played our faces off and felt lucky.
Lastly if you want to make a donation to speed up research to cure nf-2 here is the link :