It's been a while since my last update. We have been busy living our lives and getting back to a normal routine in the aftermath of last summer when Raphael received 30 rounds of radiation behind his eye for a tumor which was growing. It seems like that was years ago and I have completely detached myself from those memories.
Right now, I am hunkered down with Raphael and Charlie. Charlie has a fever and a cold and Raphael is recovering from a neck surgery that will hopefully give his voice some more volume after a tumor on his brain stem paralized 1 of his vocal chords.
The thing with nf-2 is, whenever things seem calm, there is always something lurking in the corner to take us off of our tracks... This is him recovering from 3 hours of surgery. I love that face.
We anticipate some down time these next few months before his 3 monthly mri and I plan to take that time to meet with a few more specialists in Boston in the hopes that no more big surprises come my way. Or at the very least to get a few more nf literate specialists eyes on Raphael and hopefully put some of my worries at bay.
Additionally, Ron and I are taking our middle aged butts and getting geared up for training season for the NYC triathlon. Our team is called Team Raphael and we are raising money in honor of my tough lil guy for The Childrens Tumor foundation. They are working really hard on better treatments for NF and we MUST help them. Time is of the essence.
I will attach the link to make donations at the bottom of this post and Ron and I would be so incredibly grateful if you could make a donation big or small... We need CTF to get enough funding so 1 day I can stop fund raising.
Lastly, we want to invite all of our friends and Raphael's friends to join us in Central park on July 24th to party with Raphael after the triathlon. Mark your calendars. It will be a wonderful afternoon and we'll have big plans for kids and grown ups.
Here is the link for our race donations.
Thank you so much.