WOW! We're home from camp and our minds are spinning!!!
A long, long time ago (almost a week) we were in the big circle of introductions and many families welcomed the new families (19 of us) and told us many things - much of which I can't remember.... but some of it is as simple as, "this camp saved my life!" and "this camp saved my child's life!" Although that seems a little dramatic - I see what they mean. There was so much critical information that we need to take to our clinic for the sake of our child's life. We were taking for granted that medical doctors in the medical field know everything there is to know about every medical condition. We're remiss. Diamond Blackfan Anemia, (Pure Red Cell Aplasia) has such a small population that many doctors have never had a patient with DBA, and have only read about it in books, and assume that it's like other bone marrow failure syndromes - thalassemai and sickle cell anemia. Unfortunately it's not. Although some of the treatments are the same, transfusions with chelation (ridding the body of iron that has bypassed the iron door), the side effects are different. So when doctors lump all of their anemia patients together they're not totally accurate in understanding that the numbers may be the same but they might not exactly mean the same thing....
ANYHOW, we have lots of information spinning around in our heads. Lots of new words and feelings. One parent said that DBA (Diamond Blackfan Anemia) is the best bad thing that ever happened to them..... It's the worst thing that ever happened to them, but it's the best thing too. They're raising money for research, their marriage is stronger than ever, they feel love, passion, and have energy they never knew they'd have to fight for their children's lives.
Many parents are raising their DBA children without another parent - sadly the marriage couldn't handle the stress and unknowns of DBA.
One thing we noticed about Camp was that many people seemed to rely on God, have some sort of faith, yet there weren't any breakout sessions addressing this. We see a need.... and maybe that's something we can help build at Camp - any camp, all camp or just during our Camp session.... which we hope we can get invited back too!
We have a new protocol for Short Stuff's care..... our doctor doesn't know yet though, so shhhh, don't tell. We want to present it respectfully with journal articles. We're going to be a team fighting for our child's life.
We were sent home with a directory of the families who attended so that we can continue dialogue, support one another and get together. We were also given a CD with over 2500 pictures on it.... I haven't finished looking through each and every photo.... but here are a few....