Ryan is officially in remission!!!!
How exciting is that!!! We got the preliminary results on Wednesday - the 2% number - and the final, more detailed bone marrow results confirm it. We saw Dr. Steensma today in Boston, and he was as excited as we are. Every single patient he has treated with the CD22 antibody has gone into remission!!
So far, we are not aware of any long-term side effects or permanent damage potential. Of course, that's why they do these studies.
Part of me wants to shout from the rooftops to everyone who has ALL: Go to Dana Farber NOW!!!! Of course, they can't accommodate everyone, and for now - since it's still experimental - it is only being used when "standard" therapy fails. But the standard therapy has all kinds of toxicities - heart damage, serious immunocompromise (Even more than with the cancer itself), neuropathy, sterility, you name it. We met a man at Dana Farber today who has a rare type of leukemia and was treated successfully with arsenic. I'm glad it worked for him. Yet slightly aghast at the things that need to be used to kill cancers.
Won't if be great if someday soon they can look at the cells, identify those with high levels of DC22 and go straight to the CD22 antibody? And find markers on other tumors that can be targeted? It takes a long time for new drugs to come to market, and rightfully so. I can name multiple "miracle" drugs that looked great in clinical trials, but after a year or two on the market and use in thousands more patients, serious problems were identified. I never wanted to be the first to prescribe new medicines to my patients unless well known meds failed - for precisely that reason.
Yet now, with my son's life on the line, I'm desperately grabbing for this drug and almost giddy about it's potential. All the future "what if's" pale since (as Dr. Steensma pointed out today) without this drug, there were very few options to save his life. So we'll deal with whatever complications may come someday in exchange for having a someday!
I'm again reminded that lots of scientists labored extensively to discover the minutia that makes this possible. I firmly believe that Heavenly Father guides many of them. I'm praying now not only that Ryan will continue to benefit from this miracle drug, but that scientists will be inspired and given gifts beyond their own capacity to be able to help many others.
Thanks to Jen Dinkel for taking the girls today - they had a great time.
Oh - and guess what: after Ryan got the news on Wednesday, he started playing his guitar again and is looking into on-line classes from BYU. He's starting to live as though he's going to live!!
Love to all. Thanks for every prayer and fast that led to this miracle!!
---Barb
Awesome!!!
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