Downs and ups

It is day 22 post-transplant, and our counts have been down, down, down. On Monday, ANC 272. Fine, I thought, that's really pretty much the same as Sunday's 288. But on Tuesday, ANC 255. And today, ANC 195.

For what it is worth, Samson's doctors do not believe this is the beginning of a downward spiral indicating the transplant has failed. They feel this is very likely a normal up and down pattern that can occur as a person is heading towards engraftment. I feel that this could be true, but I am not convinced. I am worried.

I am also frustrated at the continued separation of our family, which isn't good for any of my children, or for me. Even as Samson's counts have gone down this week, Dr. Nemecek has further revised her quarantine strategy for Samson, as relayed to me by her assistant. First it was three weeks with no sibling visits; then it became, wait until we have one day with a 500 ANC; and now it's two days with a 500 ANC. It is unclear whether these changes are the result of some evolution in Dr. Nemecek's thinking, or whether she was just getting me in deep before she gave me the bad news that she never intended to allow my children to visit their brother here. Two days with 500 ANC is the criteria for discharge from the hospital. Adding to my frustration, Nemecek herself has not made time to come discuss the issue with me, and the attending physicians this week have not been able to articulate the reasons for these special Samson policies.

I could think of all kinds of things wrong with lawyers, but most doctors could learn a thing or two about client service by tailing a good lawyer for a day. It has not ceased to surprise me how rarely doctors carefully explain their recommendations to me, the mother of their patient. I always have to ask for it, and often I have to demand it. Whereas lawyers, even lawyers for wacky felons, treat their clients like they are capable of weighing alternatives and making decisions in their own best interest, doctors usually just want to decide for me. They need to be reminded that yes, if informed, I will think and act in the best interest of my child, and that it is their job to assist me in this.

Of course, I know that any person who comes within a few feet of Samson poses additional risk of infection. But as Samson's mother I am nurturing not only his body but his spirit; I know his life is in danger, and I believe the warmth of his family vastly improves his quality of life. I have not, so far, gotten the explanation I need to properly balance his needs and make the best choice for us. In frustration, I let this morning's medical team know that I intend to start having the kids visit on Monday unless I am convinced otherwise; perhaps that will jumpstart a conversation on this topic between me and Dr. Nemecek.

I hope that by Monday Samson's counts will be recovering and indicating engraftment. But we will also get some additional information from a bone marrow biopsy we are doing on Monday afternoon. The marrow cells will be examined to see if they are normal looking, and they will be tested to see if they are donor cells or Samson cells. We will also be looking to see if any remaining cells show the dropped chromosome 7; these are the diseased cells that should have been eradicated by the chemotherapy and radiation. It will take about a week to get the results from that test.

Like all bummer days, these last few had their bright spots too. First, Samson has been laughing a lot, starting to eat, sleeping more comfortably; he is slowly but surely feeling better. No matter the numbers on the paper, this makes it easier to believe that something good is happening.

Also, we finalized arrangements for Aaron's sister to come out at the end of the month for a several day working visit. Then I was just surprised by my big brother, who emailed to say he is going to come out from Memphis for a couple of days and bring his son. I can't wait to see them.

And Josephine lost her first tooth when I wasn't home. But -- here's the good part -- she wanted to wait until I was home last night to put it under her pillow. So the tooth fairy came when I was there. And if the tooth fairy is not a bright spot, well what is?