Remission

Rosina had a bone marrow biopsy on Tuesday and the results are back. They see zero "blasts" - which are the bad blood cells and she is officially "in remission"! This is a big weight off our shoulders as it means the initial treatment was successful. While that test was to confirm what we'd already been told, there's always trepidation before the test or before hearing the results, so it's a relief.

I forgot to post this picture that I took with my phone when I was leaving the hospital. It was right before they said she could go home. Look in the middle in the background. Dim as it might be, it is extremely unusual to see a rainbow in Los Angeles in the summer as we don't get rain from April to October - and I mean no rain - except we got a twenty minute shower this day. Rosina reminded me that it was perfect for the blog: No Rain, No Rainbows.
She's been home for about ten days, and the relaxation of being in your own bed is also tempered by the fact that people aren't coming to check on you all the time and there are a bunch of other, loud, people around, but it's been nice and certainly it's where she wants to be. She's feels fine generally, just taking it easy, doing a few things here and there and gaining some weight. She lost some weight when she first got home which was being maintained by an IV, but she's gained it back. By the time her hair fell out, she'd started growing new hair, so she's got this blond fuzz. Actually blond - not white, not gray, blond. Last weekend my brother John was here with Margo and Jeb from New York and that was great and very helpful. Nina was also here for two days before she jetted off for more summer.
So what's next? The standard procedure in Leukemia treatment is to follow up the "induction" therapy, which she's completed, with "consolidation" therapy. It's another round of chemo which can be an outpatient treatment where you go to the office everyday for the treatment and then you go for daily blood counts, or it can be in the hospital for another week to ten days. It's not as heavy duty as the first round. Once you've gotten rid of the "blasts" that you can see, there is (presumably) stuff you can't see. That's what you're going after. We don't know yet what we're looking at. Despite having a procedure to all this, there's still a lot of "wait and see". Which is as it should be.

The next part of the program is the bone marrow transplant. The search is on. As I mentioned before, the NMDP did not have a match. They also contacted REDOME in Brasil which also did not turn up a match, but people are always being added so they keep checking back. The BMDW (Bone Marrow Donors Worldwide) has turned up one possible match. They have contacted this person (who is in Europe) and are in the process of checking it out - it takes a little while. They are also looking at cord blood. There are organizations that offer a service of collecting and keeping blood from umbilical cords when babies are born. This blood is rich in stem cells and and is stored (frozen) simply for the purpose of helping someone, presumably the baby. If you go have a baby these days, it's a service that they usually offer to you. We did it with Will in 1999. It is also available as a source for bone marrow transplants. It is extrememly unlikely, though, that Will's would match Rosina.
When I spoke to Mei, who is conducting the donor search at City of Hope, she told me that many people who are on the bone marrow registry signed up because of someone they knew who needed a transplant, but rarely do they match. But this fills up the registry and perhaps one of these people will be a match for someone else. If you'd be willing to do this for Rosina, I encourage you to sign up (link on right) - it's really a "do unto others as you would have them do unto you" opportunity.
Will has been busy showing us magic tricks and balloon animals he learned at camp (a good fallback profession if the poetry doesn't work out), Nina is in Ireland, and Jake got a job! Jake is working for a website doing internet research on the internet about the internet - and getting paid. It's perfect.

The show of affection and generosity has been great and so has the response to the blog. As a few people have pointed out, it has created an invisible community of sorts that generates lots of positive thoughts. It kind of forms a circle around Rosina, around all of us actually, and it has meant a lot. It's also been so helpful for us to know that people are informed and I can point them here to catch up! Thanks to you all for the response, the blood donations, the food and everything else. It might be a little slow for now, which is good, but we'll keep everyone up to date.


xo
ph