Way back on March 17th, we contacted the NIH (National Institutes of Health) in hopes of finding a clinical trial for Jordan to participate in. It's a huge deal, so it has understandably taken a few phone calls to get to this point, but today we were told that they are interested in pursuing something that might help him. A bone marrow transplant! I think they may have been swayed upon hearing he has six brothers, at least one of whom will surely be a perfect match as a bone marrow donor. Roll up those sleeves, boys, ve vant to test your blood.
We've given the NIH coordinator Dr. Z.'s phone number, and asked him to persevere even if our doc's response is less than enthusiastic. It's taken a month for them to decide they're interested. For all we know, it may take another month before they contact Dr. Z. By that time, our mythical mind control methods will have convinced him to cooperate fully. In any event, treatment will continue here, and we will likely have a consult in Seattle with Dr. Hawkins in a few weeks.
Jordan came home for a few hours this afternoon on a hospital pass. Had it not been for spiking a fever last night, he would have been released today. After twelve long days and nights on a squeaky, automatically re-positioning, thin, hospital mattress, his own bed feels luxuriously inviting. But no bed is comfortable 24/7, so, the amazing Jordan did take himself up from his bed, and walk to the family room for pizza and a movie, followed by a small serving of peach ice cream. He was loath to return to the hospital for the night,, but if all goes well, he'll be back with us tomorrow, until it's time for the next round of wonder drugs.
This morning's CBC revealed Jordan's hemoglobin rose for the third consecutive day. On the 12th, the date of his last transfusion, it was at 7.8. Naturally, it was higher the next day, at 11.1. Then it began the all too familiar decline: 10.5, 10.2. But wait, then it commenced this encouraging climb, 11.0, 11.6, and now, 12.1. WBC's are sitting at .3. Platelets dropped from 18K to 13K. Ordinarily, a platelet transfusion would have been ordered, but the doctor wants to give it one more day to see if they'll turn around and head in the right direction.
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5 comments:
Theres no place like home. Hopefully there will be more time at home in the days to come. Keep up that good work, all of you.
Liz
Hooray for the NIH, and hooray for 6 healthy brothers with plenty of bone marrow to spare! While we're at it, hooray for platelets, rising hemoglobin and hospital passes. Lots of things to be grateful for and to look forward to. Hang in there Jordan, I think that light at the end of the tunnel is a little brighter! Louise
I agree , there is not place like home and your very own bed and yes I do believe there are some valid Hip Hip Hoorays going on, let's get more of them too!!!!!!
Oh Bonnie this sounds sooooooooo encouraging and does my heart good!Thanks for putting a smile on my face.Pizza,a movie,peach ice cream and one's own bed is good medicine for anyone!!
Keep up the good work!!
We love you all!!
Deb
www.cllcfriends.com
Thanks, team! My optimism has been tempered by remembering my friend, Trudy's, transplant experience. She and her sister matched originally, but after she'd had over 15 transfusions, for reasons I don't understand, they no longer mattched. Trudy had enough of the right kind of cells to be able to use her own for the transplant, and she is well and healthy today. Jordan has had more transfusions than she had, and I'm sure he doesn't have enough viable cells to harvest for an autologous transplant (no way). The NIH doc never asked me about transfusions! So, we'll continue to wait, and hope.
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