Sunday, July 8, 2012
Diamond Blackfan anemia over load
I'm not going to lie. I thought I was going to camp to be a camper. Or at least for my kids to enjoy that true camp experience- archery, arts and crafts, game room, cafeteria line wih as much yum-yummy food as you want, bug juice, etc you get the picture.. Camp Sunshine is prestine! Clean, shiny, more people in yellow tee-shirts than not, (volunteers) HOWEVER, about a week ago the organizer phones me to tell me That indeed its not an opportunity for respite, it's an opportunity to network, get support, and meet others with the same diagnosis as Short Stuff and even more importantly, an opportunity to listen and ask questions about medical protocols, what's out there for trials and information. Did I mention that there are only 700 registered cases in Noerth America? Yes, that's countin the 2 in Canada. There is a foundation which I researched last night..... I wish I didn't. I like "ignorance is bliss" too much information, too many sad stories, too much weight on my heart for my own kiddo as well as those I haven't met. And they want to gather us together to help us make decisions for our children, or introduce our doctors to possible treatment plans. Did I mention we are the only case at our sons hospital? Get this: there are only 4 cases at CHOP (children's hosp of ?(some place in PA). So yea, I'm gatMhering info, stats, bu hard is the faces that accompany these numbers. Each person is required to wear a name tag and there's a certain code on the tag. A sunshine icon is "first time family" that's us. People are extra helpful to the sunshine wearers. An asterisk = person with DBA diagnosis, again with the faces associated to stats. There are 56 families here = at least 56 people here who know their hemoglobin and feritian numbers (iron level). The word MRI and Exjade roll off moms and dads going like they are medical professionals thenselves. The tidbits of information keeps coming as kids toast marshmellows, play volleyball and volunteers serve blueberry cobbler- as if this is all natural ...... My head is spinning, heart is aching, eyes are leaking, and it's just the first day. I have no idea how I'm going to handle the introductions tomorrow- I want to opt out and go hang with Max the therapy dog. Sorry if there are any crazy errors - I'm on my phone and it's hard to go back and spell/grammar check.