Here’s an update to last week’s call for blood and/or platelet donation for Nathanael Sandstrom, a young (well, my age) man suffering from lymphoma at Sloan-Kettering in NYC. It’s from his wife, and was passed to me via my pal Elayne, who first sent out the call to all VM friends:
A bit of good news: it seems that the doctors have a dignosis and treatment that they feel confident about. Last week, a new doctor came on the case and suggested histiocytosis as the bone marrow disease that has been keeping Nathanael’s blood counts so low and making him so sick for so long. Histiocytosis is an extremely rare condition, usually found in children, in which histiocytes attack white blood cells and platelets. There have only been 2 cases at MSK in the last 10+ years that our doctor is aware of, and so she consults with the authority who is based in Houston. Apparently (in Nate’s case) the disease results somehow from the original lymphoma.
The 8-week treatment for it (combination of steroids, antibiotics, and a new chemotherapy) has been working, albeit slowly, and so Nathanael has been feeling and seeming much better. In the last few months he’s lost a huge amount of weight and most of his muscle mass, so he’s now focused on rehabing his body. If the trend of the treatment stays positive, he may be able to leave the hospital within the next couple of weeks for an outpatient period. After that, he’ll need to go back in for a bone marrow transplant to replace his immune system. That transplant will be used to ultimately defeat the histiocytosis but also to consolidate the treatment for the original cancer.
This sounds like a lot and it is, and so Nate is just looking forward to getting strong enough to be out of the hospital for a little while.
We are deeply thankful to everyone who has donated blood or platelets here in NY; friends, family, colleagues, and people we’ve never even met but who make the trip and the effort on Nate’s behalf. We are deeply moved.
And thanks to everyone for notes, calls, thoughts and prayers, which sustain us on a daily basis.
Onward. xoxo
For more information about this disease go to http://WWW.histio.org