Trust

I had a helpful conversation today with a friend, Kate, who just spent the last year fighting breast cancer. Next week she leaves to run a half-marathon in Paris, which sounds so good, minus the marathon, plus wine. I appreciated hearing about how she decided to get her treatment here in Portland, rather than looking elsewhere. What can another place give me that Portland does not? It better be something real, and something I want, in order to give up everything we gain just from being home. We also talked about how Kate picked her doctor and then trusted her; she did not spend a lot of time or energy second guessing the experts she had chosen. I think that would be nice, to really trust someone. It sounds relaxing. It might be easier to trust someone with myself than with my baby though. I do think Dr. Nemecek, the bone marrow transplant doctor here, is a good candidate. She is reportedly very smart, very committed. And she is a mother. We will see.

I have not entirely ruled out Seattle for transplant. I will meet with Dr. Lauri Burroughs there on Thursday. Another frustrating back and forth today: after a gazillion phone calls from me requesting an urgent appointment, the Seattle bone marrow transplant folks couldn't possibly fit me in until next week. No way, so sorry. So I sent an email to Dr. Shimamura, who we met in Seattle two weeks ago, thanking her for being so helpful and lamenting the fact that the transplant people just weren't interested in saving Samson's life, so gee, I was going to look elsewhere. Shortly afterward, Dr. Burroughs was calling from transplant and looking forward to seeing me this Thursday at 1. Really, if she was available on Thursday, why not just do it, why make me be so crafty? Do I look like I have time for this? In any event, the whole thing was not trust-building.

Since I told Dr. Nemecek and her team that we are thinking Portland at this point, they are starting to move things along and get set up to go here. Doernbecher's bone marrow transplant nurse coordinator, Allison, is working on setting up the tests and procedures for both Samson and Harriet that need to happen before the transplant. Dr. Nemecek emailed yesterday that she is thinking we can finish the pre-transplant workup during March, get Samson admitted to the hospital to start conditioning (that means radiation & chemo) the week of March 29 - April 2, and do the actual transplant the week of April 5. I will not be surprised if it is pushed back slightly because of scheduling issues. I would imagine this would be the same approximate schedule Seattle would shoot for.

Dr. Nemecek also emailed me her consult note from our meeting with her last week. A lot of it was a recap of Samson's history, but the summary of our current situation was helpful for me and so I am copying it here:

Rationale for transplantation: Samson has a suspected bone marrow failure syndrome with associated neutropenia, anemia and newly diagnosed myelodysplasia (refractory cytopenia) with monosomy 7. Although the definitive diagnosis of the bone marrow failure is not completed, the development of myelodysplasia is concerning and his risk for evolution to acute myelodysplastic leukemia is very high. The only known cure for childhood MDS and bone marrow failure is allogeneic stem cell transplantation using an unaffected donor. Samson's sister is HLA-identical to him, and our donor of choice if she is deemed eligible after donor evaluations are completed. He also has several unrelated donor choices available in preliminary world book search, which will be explored further if his sister is not able to serve as the donor.
The probability of curing marrow failure/MDS in children is approximately 70% in the early stages of myelodysplasia, with decreasing risk for success as myelodysplasia evolves into leukemia. The risk for transplant-related mortality is approximately 14% in patients with normal organ functions. Causes of death other than the primary disease include: infection, graft-versus-host disease and acute or late toxicities from the transplant preparative regimen itself. Of concern in Samson's case is his fragile pulmonary status. A full myeloablative preparative regimen is not recommended in this setting due to a much higher expected risk for transplant-related mortality. However, there is some risk for graft failure using nonmyeloablative low-dose regimens and finding a balance between those two risks (transplant mortality vs. graft failure) is necessary to achieve the best possible outcomes.

I can't say I'm wild about those numbers, but they are not entirely grim and they are way better than our numbers would be if we had not detected the MDS at this earlier stage. Samson is obviously stronger than the average baby, and he has a lot to hang in there for. I mean, we are going to Paris after this, right?

It will be a busy rest of the week. Tomorrow, music class for the twins, ballet for Josephine, and a possible doctor appointment for Cash, who has weirdly red eyes today. Gave him Zyrtec tonight and am hoping he wakes up cured. Thursday Seattle. And Friday a bone marrow transplant education session with other families at Doernbecher, which should be informative, except that group things sometimes give me the creeps. I will keep you informed.