The road ahead

As promised, I should report on the bone marrow transplant education session we went to at OHSU on Friday. It was informative in a general way. There was only one other parent there, who did not speak English, which was on one hand a relief because there was no occasion for chit chat. On the other hand, he required an interpreter, which was similar to the experience of having an interpreter when you are trying a case in court; you want it to go fast but it goes slow. Luckily Samson was in a great mood and he laughed most of the way through the presentation.

After the session at OHSU and the overview I got from Dr. Burroughs in Seattle, I feel I have a good idea of what the road ahead of us will look like. The first step is a pre-transplant evaluation/preparation period, which we are beginning this week. In addition to the more invasive testing that requires sedation, Samson will have ultrasounds of some organs, lots of blood work, and an ekg of his heart. On Wednesday, Samson is scheduled to be sedated and undergo pulmonary function tests, a bronchoscopy, and a second bone marrow biopsy. The bronchoscopy involves insertion of a flexible scope in Samson's lungs, which allows us to test for infection. The biopsy is to establish the current state of Samson's bone marrow, which is expected to be in approximately the same place it was last month. Of course we hope the disease has not progressed, and for the record, I'm hoping it disappeared. You never know.

Next week, Samson will be sedated again to have CT scans of his body to ensure there is no infection lurking undetected. Infection is a huge issue with Samson because his body does not have the ability to fight them off, and previously he has not given clear signs when he was suffering from an infection.

Finally, we are to meet with "Child Life" and "Bridges" representatives, which is social worky and sure to make me uncomfortable. You know things are bad when (a) doctors cry and (b) everyone is trying to make you talk to a social worker. I appreciate the medical empathy. The social work thing irritates me.

Meanwhile, Harriet will be undergoing her donor evaluation next week, which involves blood work and also a biopsy of her bone marrow. She will need to be sedated for the biopsy, but I understand the whole thing is not too painful, which I hope is true because I have to get her back there for the actual donor part a week or two later. We have talked about the fact that she will donate bone marrow cells to Samson. She is taking a twice daily iron supplement, which I mix with juice and she drinks through a straw while sitting in my lap. it is an exciting ritual. She knows she is a "match" for Samson and she is proud of that. I am so proud of her.

When we enter the hospital, hopefully at the end of this month, Samson will have several days of high dose chemotherapy. It is unclear at this time whether he will also have radiation. This conditioning regimen does two things -- it gets rid of the MDS disease cells, and it knocks out Samson's immune system so that his body can accept rather than reject the new cells from Harriet that will create his new immune system. The side effects of the conditioning regimen may include painful mouth sores, nausea, vomiting. The transplant itself is simply a transfusion of the new cells; it is the conditioning and the period afterward, before the transplant cells "engraft," that is really dangerous. Hopefully the new immune system, compliments of Harriet, takes hold and starts working within a few weeks. We will know that is happening by looking at daily blood counts, which will show the numbers of the various cells going up and up, produced by the new immune system. Any transplant patient is considered very high risk for infection during the first 100 days after transplant, so special precautions have to be taken during that period, and often afterwards. However, if Samson is doing well, he could leave the hospital before the 100 days is over.

One major issue with BMTs is graft-versus-host disease, or GVHD. This condition affects 30 to 50 percent of patients who receive stem cells from matched related donors. I understand that it is good to have some degree of this condition, because where the "graft," or donor cells, fight the "host" (Samson's old immune system), they also tend to do a good job of fighting bad cells. This is the "graft versus leukemia" effect, which we want. But you don't want too much GVHD, because it can cause major problems in many systems of the body -- skin, liver, and GI are places it tends to show up first. GVHD can be fatal, but more commonly it is just miserable. To control GVHD, Samson will be on immune suppressant drugs for at least 6 months to one year after the transplant. While he is on those medications, his risk of infection will continue to be high and we will have to be very careful about his exposures. We were told to expect him to come home from the hospital on 15 to 20 different medications.

And so, the road ahead feels a little daunting. I have to come back to the reasons we keep moving forward, like the gorgeous, funny, scary (twins on a cliffside) hike we took in the Columbia River Gorge this weekend. We all deserve many more days like that, and this is how we get there.