February 16, 2009

Hello Family and Friends,

Things are really starting to move now. Today, Tom came home from an almost 5-day stay at the hospital (not our idea of how we were going to spend this long weekend, but oh well - at least Tom fell completely off the Valentine hook). In the end his fever seemed to be credited to a staph infection, which the steady stream of IV antibiotics took care of while he was there. The good news is that while he was there they completed most of his pre-transplant testing, including a CT scan. Today Doctor Chen reported that the CT scan (completed on Friday), required before the transplant, took the place of the scheduled PET scan in ruling out lymphoma, which has officially been ruled out. We expected this, but it was great to hear. Tom is also gaining weight. The lack of physical activity, the Ensure and the good cooking at City of Hope (I know it's sad that a hospital cooks better than his wife, but he knew what he was getting into) all helped quite a bit.

In other, what we hope to be useless, information we found out that Marc, Mike and Jeff are all HLA-matches for each other. We hope to find out this week about Steve and Dave. Just interesting to know should anyone else need to swap marrow (not sure if this info is helpful for other body parts, but intend to ask) . . .

Last, but not least, the transplant has been moved up 1 week, which means Tom starts chemo in 12 days. The doctor wants to move quickly to avoid Tom developing any more infections, which we clearly appreciate. Tom is expected to be in the hospital for five weeks post transplant. We're still trying to get clear on whether he'll be there during the chemotherapy, which would mean another week.

Tom's new schedule will be:

February 28, 2009: Estimated start of Tom's "preconditioning" chemotherapy
March 6, 2009: Estimated date of "harvesting" of Tim's stem cells and the transplant to Tom
March 27, 2009: Graft expected to take place
April 10, 2009: Potential discharge from the "plastic bubble" wing of the hospital
June 14, 2009: Rough estimate for the new marrow to be fully functional and productive
March 6, 2010: Rough estimate for return to normalcy

Gabriel still seems to coping well. Now, that we have a plan I will request that Dr. Chen put in an order for Gabriel to participate in a "children of adult patients" group at City of Hope. The hardest part will be that Gabriel will see Tom little, to not at all, during the five to six weeks of hospitalization. I know families have endured worse, but just having Tom in the hospital for five days brought me down and I know that Gabriel can feel that too. He tried, valiantly, to keep me busy with his chatter and constant imaginings. In fact, at one point he told me that Mario (of Nintendo fame) was going to be in the hospital for four weeks. So, I asked if he wanted to make a calendar so that we (Baby Mario and Rosalina - also Super Mario stars) could count the days that Mario is in the hospital. He loves his calendar (which I encouraged him to make for five weeks) and is getting used to this idea. Tom is great at explaining things to Gabriel (such as his face mask, which Tom carefully introduced and Gabriel waved off with ease) and is thinking ahead to things that may be difficult for him. Tom plans to shave his whole face (which Gabriel has never seen) so that Gabriel can get used to it before he loses all his hair.

Tom's brother, Steve, is planning to get Tom a webcam for his little old laptop. This will be great for keeping Gabriel connected to Tom in as tangible a way as possible. Now, I just have to figure out how to use the webcam on my computer. Gabriel is growing and changing so much I wouldn't want Tom to miss any of it. Gabriel's reading skills are expanding so quickly now. He also loves to think up little math problems and either ask us to answer them or answer them himself. He's enjoying art as well. When I refer to his "art area" in the guest room he says to me, "You mean, the art ROOM." He likes to hang out with me in there while I srapbook and he borrows my supplies to make cards and things. I did get busted this weekend trying to throw away some of his art work . . . there were tears . . . I caved.

We hope to visit Santa Maria, briefly this weekend, for my Godson, Kale's birthday. It'll probably be our last time for at least four months (which is a long time for us).

Thank you for keeping us in your prayers. Your love is encouraging. Today's a good day, and though we acknowledge that there are some tough days ahead, our hope remains constant and unwaivering, as true hope always does. Love, The Highland Park DuBranskys