stem cell journey

do you recognize this handsome face? it sure has taken some getting used to. since doing several stem cell treatment since august 2010, thanks to incredible donations (especially one sizable one) from family friends, there have been some changes. as you recall, N dropped to 85 lbs. last January and a port was put into his chest for IV nutrition. in june, he suffered a compression fracture in his spine due to his advanced osteoperosis which has still left him primarily bedridden (he broke his spine in 3 places in 2007 after a major seizure so his back has never fully recovered). last year at this time, there was little progress and we were painfully doing paperwork for advanced directives and discussing N's wishes should something happen to him. it was awful.

then when N was flat on his back barely at 90 lbs. in june, that's when he convinced us to let him try the umbilical stem cells. "what do i have to lose?" he kept telling us. we held back because of finances (not covered by my insurance) and worries that it wouldn't work in his unhealthy condition.

after 5 donated treatments, for the first time in years (and remember we've known one another since middle school) N has gained weight. to date he has gained almost 20 lbs. i don't know what to say or what it means, but i am nervously thankful for this desperately needed gain. his red and white cell counts are also staying up. i am holding my breath, and anxious to go forward with more treatments.

it is still 24/7 care for N. he is relearning to walk and has some very hard days like today. his lyme symptoms are ramped up and he has to go on and off of antibiotics which regulate his pain, mood etc. it's a catch 22 because you can't stay on antibiotics for long without side effects. it's very emotionally draining to watch him fight so hard and have so many tough days of late, and then others where he cheers us up by shuffling out to the kitchen in ray bans.

we are hoping to keep up the treatments as long as possible since they are the only therapy (beyond the things he has found to just stay alive) that have helped him significantly. i have been researching fundraising ideas so i can keep this going. the umbilical stem cell injections are $4000 a piece and insurance does not help at all. as i said, we have been able to do this through a major miraculous donation. in my research, i am finding many lyme patients whose families spend all they have to keep loved ones alive, and many stories young adults who move in with parents as we have, and parents who work beyond retirement and sell all they have and get second jobs just to keep someone alive and fundraise when they have to. this research has comforted me; it's nice not to feel so alone on this unique journey. it's hard to keep asking and being in need, but i am encouraged by others who are not afraid to do the same. that's why it's been so long. it's hard to explain all we are going through and i still can't do it fully.

i know many of you out there want to help so if you have any good fundraising ideas, please let me know. i am trying to set it up through a non-profit so if you have any connections or insight in that area, i will gladly take suggestions. you know my e-mail or leave a comment.

much appreciation,

roxie