City of Hope, Disneyland, and things inbetween

We went to meet with Dr. Forman today at City of Hope in Duarte. City of Hope is a hospital/care complex with several buildings and nice landscaping. It's 27.1 miles from our house on the far side of Pasadena, which means it could take half an hour to get there, or with bad traffic, two days. We liked the Doctor a lot and he listened to all our tales of woe and I'm not even talking about the medical stuff. He has been in contact with our other doctor, Julie Dunhill, and had a look at all the reports etc. His nurse is Brazilian so there was Portuguese health talk. His primaray focus is doing the Bone Marrow Transplant (BMT) and the factors involved in that. We still are waiting on some reports that may affect the actual drugs used for the chemotherapy which would begin Wednesday the 20th. He also noticed that the bone marrow biopsy was done with a smallish section of marrow, so he did another one today to be sure about "blast" counts and "auer rods" and other diagnostic stuff that I unfortunately know the meaning of. He was, in general, informative and positive, and while no one diminishes the seriousness of the condition, he said it was good that this was caught early, quite by happenstance, and that Rosina is not showing any symptoms like weakness and bruises and other leukemia stuff. This makes her stronger for the long haul.



A little more on Bone Marrow Transplants. Many people have asked about what donating is/means/entails. If you need a transplant, they do a blood test and look at 10 indicators specific to you. Then they look at their (worldwide) registry of 10 million donors - yes, 10 million - and look for a match. There could possibly be 35. Maybe 1000. (about 70% of patients find matches this way - which is better than eharmony online dating). Then they begin to contact them in small numbers and see if they're interested. If so, they draw some blood to check again if they truly are a match, and if that's good, do a short physical to check them out - health history etc., and then, when the patient is ready (timing counts) they get the marrow for the transplant and get it to the patient.

How do they get the marrow you ask? No saws, drills, or random-orbit spindle sanders are involved. There are two methods and both are used equally. One involves the donor getting a shot that increases stem cell production so there is more present in the blood, then they draw some blood a couple of days later. The second is a bone marrow aspiration which is a five minute deal with a needle into your hip and they pull some fluid. In terms of having yourself tested, basically what you're doing is putting your name on the registry after they draw blood. If it's not for Rosina it could be for someone else, but I didn't get the impression that it's at all likely we could match her. Although, for me, if some stranger is willing to give bone marrow stem cells to help my wife, I'm willing to give bone marrow stem cells to some stranger. More than fair. If there is no match, they can use some of the patient's own blood if they're in remission, but it's not the first choice. There are a lot of factors and possible complications that will be determined and dealt with down the line. Again, Dr. Forman was encouraging in that it was early and Rosina was in better shape to go through this.

A couple days ago she went to Disneyland with our kids, Sonia and some friends. Our friend Susan helped us with the last minute hook up to get a guide at the park. It made a big difference, as while they don't let you cut lines with a guide anymore - they cut lines with the guide. Big difference. The wait at the new Nemo submarine attraction was 3 hours! 3 human hours! I can BUILD a submarine in three hours! Luckily they got to do all that without the lines and took advantage of the situation and stayed there until 8pm. As if impending chemo wasn't torturous enough. But they had a great day. The guide, who came in on her day off revealed that her father is suffering from Myelodyplasia. She really felt like she came in for a reason. It was a good trip.


Tomorrow is haircut day! If you're going to lose your hair, it's better not to lose a whole lot of it, so Jose is coming over to the house tomorrow to give Rosina a really short cut. I'm confident she can pull it off. She's done it before! (This is her at three.)

Unfortunately for us, our families live far away. My parents will be here next week and others will come, but I have to say that we feel completely surrounded with love by our many friends here. A lot of support and a lot of help. And for a waspy yankee like me, it's been a great lesson in caring; for the brazilian girl it poses a question: why isn't it always like this?
Thanks, everyone, so much!
xo
ph