August

In case you were getting geared up for our April 5 start date, settle down. We put it off for another week.

Don't think I'm dragging my feet. It was partly because of doctors' schedules; we couldn't get the central line placed at the right time. And then, when we met with Dr. Nemecek on Monday, she told us that they have decided Samson can't have visitors for his first three weeks in the hospital -- during his chemotherapy and for a couple weeks after chemo while he is most vulnerable to infection. I can have other caregivers relieve me but, significantly, the kids won't be allowed to visit. It's strange, the things that get me during this process, but in the midst of one of the grimmest conversations I have ever had in my life, the only time I cried was when I realized we wouldn't all be able to have birthday cake with Samson on his first birthday, April 9. Samson is of course totally oblivious. But while I live and breathe there will be first birthday photos, and he won't be by himself in them.

Thus, the central line is now scheduled to be placed on Tuesday, April 13, after which Samson will be admitted to the hospital. The conditioning regimen will begin the next day. Depending on a couple of factors, we learned, Samson's chemotherapy will last for either 7 days (the treosulfan regimen) or 10 days (the busulfan regimen). The regimen decision will be made next week, and at that time we will be able to pinpoint the harvest/transplant day -- "day zero" -- which would be either April 20 or 23. Both of the regimens under consideration are "reduced intensity" regimens, meaning they strive to prepare Samson to accept the new immune system and to eliminate the bad monosomy 7 cells, but without doing him as much damage as some other, more intensive regimens. The balancing act is to do enough so this works, but not so much that he can't recover afterward.

The only other big thing that happens before the 13th is a final bronchoscopy, which we are doing tomorrow at 11:30. That requires sedation, but I expect it will be fairly quick and hopefully uneventful. You may recall we ended up in the hospital for a couple of days after the last one, but this time we are not taking Samson off antibiotics for the procedure, so I am anticipating this will go more smoothly. Dr. Nemecek wants the procedure done, she says, to ensure that we are treating the infection that we found last time, and that there is not some new thing in there that is not covered by the current antibiotics. Everyone seems to think it unlikely that this bronchoscopy will result in further delay in the transplant schedule, but let's just say I'm writing the dates in pencil.

We spoke at length with Dr. Nemecek about risks, benefits, options. Her opinion remains that the potential benefits of waiting any longer (overall growth, lung improvement) are outweighed by the risks of delaying transplant (infection and leukemia). She is extremely concerned about the state of Samson's lungs for weathering the transplant; as she says, if you have sick lungs, they get really sick during transplant. But she is convinced that his lungs over time are more likely to get worse than get better, so I do not believe she wants to hold the transplant up any further. Samson's major risk period will be days 0 to 100 post-transplant. Everyone knows August is the best month in Portland, and it looks like 2010 will be no exception. Here's to August -- I can almost see it.

Also on Monday, we met with Kathy Perko, who is a nurse practitioner with the Bridges team, which is supposed to fill a support role for families of very sick children. I liked Kathy. I hope I don't ever see her again or need to make any difficult decisions, but I suppose if I found myself there, I could use a well-informed and straightforward person to help me collect information, and she would be okay. I even warmed up a little to the inevitable social worker, Rowena, who was there too. Aaron thought I was hostile to Rowena before, so I tried to not be hostile, and it was pretty clear Rowena was trying to win me over, saying things like she would try to help me get a good room on the oncology floor. I'll let you know how that works out for Rowena.

I capped off the day with a five hour stay in an infusion room, where Samson was dosed up with IV immune globulins, which is a bag of antibodies from other people that may help him not get sick. He will continue to get these infusions throughout the transplant process. Suffice it to say there are ten thousand things we would rather have spent the afternoon doing.

August. Can you hear me? Zip zip.