What we have

Friends . . . we have neutrophils.

Samson's white blood cell count remained at 0.5 on Tuesday and again on Wednesday. Today it went up to 0.6 (600), so it was high enough to do what they call a differential, where the lab breaks down the total white count into the different types of white cells -- and there they are. You know we like neutrophils, but we also like other nice white cells like monocytes, and we have those too. It's like a buffet over here.

"Engraftment" is defined by my little book as follows: "The process of transplanted stem cells homing to the recipient's marrow and producing blood cells of all types." So really, we are looking for the production of cells of all types, but the neutrophils are the big gun infection fighters, so that's the number we always come back to. We will be considered officially engrafted by our doctors here when Samson has multiple days of a 500 ANC (absolute neutrophil count) in a row. Today his ANC was 108. Now that may sound to you like we have miles to go, and that is true. But when I told Aaron the news, his response was, hey, he's back to his old self! And that is true too - except really he's better than his old self.

For example, on March 29, before transplant and before we had even gotten near the chemo, a clinic blood draw showed Samson's total white count was 5.9 (5900), with an ANC of 59. This was pretty typical for real-life Samson, and it was a compelling and immediate reason he needed a transplant. As you can see, with a total white count of only 600 and an ANC of 108, today he has not only a higher ANC, but he has a much higher percentage of neutrophils, which is significant.

I know this is really good because people are excited. The oncology resident just stopped by to tell me the ANC because she had become impatient and called the lab to get it (we got the WBC this morning but the differential is slower to show up in the computer system). I already knew the numbers because our nurse had done the same thing. The infectious diseases resident popped her head in the door right after, all smiley, to say hey I heard he's engrafting! These are the same people who have warned me so often against getting excited; if they are acting celebratory, I think we should too.

But don't stop praying yet; don't stop until I tell you. The less bubbly doctors remind me that with engraftment comes our next big set of worries in the form of graft versus host disease. Samson will almost certainly experience this to some degree, and it remains to be seen how much. Again from my little book: GVHD is "the immune attack by lymphocytes in the donor's marrow (the graft) against the tissues of the recipient (the host). The principal sites of injury are the skin, the liver and the gastrointestinal tract." Minor GVHD is just fine and shows an active new immune system, which we want. Severe GVHD would be bad, but it is less likely in cases like ours, with matched sibling donors.

There is some concern that Samson could have GVHD effects in his lungs. That is a less common site for GVHD to pop up right away, but the worry is that if Samson were to have lung problems, he has little reserve to handle that well, with his long history of lung disease and damaged airways. So until his counts are higher, his medical team and I are on high alert for pneumonia-like signs that could signify lung trouble.

Meanwhile, Samson is and has been on a continuous drip of an immune-suppressant drug called tacrolimus, which fights GVHD, and he had several post-transplant doses of methotrexate, a chemotherapy drug that was targeted at any of Harriet's T lymphocytes that might have been touring around causing trouble in Samson's body prior to engraftment. When we go home, Samson will be on tacrolimus for many months to fight GVHD. As soon as he is able, we will start to transition from the IV form he gets here to an oral form he can take at home. Part of his followup care will be monitoring his GVHD symptoms and adjusting the tacrolimus levels in his blood accordingly.

In other news, Samson has gotten in a bad habit this week of having major allergic reactions to his transfused blood products. He turned red and puffed up like a balloon again on Tuesday when he had to get red blood cells. It was a severe enough reaction that we had to stop the transfusion and treat him with steroids. Luckily, before it was stopped, his hemoglobin was restored to an adequate level, and it held steady today, so he is getting a break. Not so luckily, he is going to require transfusions, of red cells, platelets, and immune globulins, for a long time even after engraftment. It will take months for Samson's new marrow to grow big and strong and make cells at a rate high enough to keep up with the needs of his body. So until we hit on the right pre-transfusion anti-reaction cocktail, transfusions may entail a day and night of misery for all.

In more cheerful news, Samson has seemed a little less painful and has actually drunk (and not thrown up) a few ounces of formula over the past day. Today we are going to try reducing his morphine dose, just to see what happens. We will go slowly; as one of my friends commented on an earlier entry, it is important to Samson's healing for his pain to be well-managed, and now that we are doing that, I don't want to go backwards. Samson has lately been very entertained by the screensaver on my laptop -- a steady stream of pictures of the people who love him most.

Also, my Josephine turned 6. Kandis stayed with Samson while the five of us went out for mexican food last night. We will continue the celebration on Saturday with some of her friends. I am head over heels in love with my daughter. I look at her sometimes and think, she deserved better than this. On Josephine's first birthday, we were just three weeks off the plane from China; no mother has ever loved her baby more, but I would say pretty much all of them had a better idea of what they were doing by the time they got to the first birthday. On her second birthday, I was pregnant and nauseous, days away from finding out we were going to have twins. On her third birthday, I had five month old twin infants, sucking the life out of me. By her fourth, I had gone back to work and was six months into a guilt-fueled habit of staying up all night with the children I had to leave all day; I could barely remember my name. When she turned five, I had to postpone her party because of our sick new baby, just home from the NICU and about to be hospitalized with his first respiratory infection. And now 6, right smack in the middle of the bone marrow transplant. Depending on how I tilt my head, I see another amazing year in the life of my family, or another year I stumbled through, being far less than the mother I planned to be.

But Josephine helps me see the enormous good in these years. She has risen to the occasion so exceptionally, so sweetly, that I can sometimes think she is the better for our craziness. I am in awe that during the last year, when she has had every reason to do otherwise, she has thrived in all aspects of her life and person. She is joyful and unselfish, curious and funny. She strives for perfection; she does not like to do anything until she can do it right, but she does not hold others to that standard. When I try to pronounce a new word she learned in her Mandarin class, she will tell me, with a gentle smile, Mom, I like the way you say that, but it's not really right, let's try it again. I hear from her teacher that she is talented with language, and that she is kind to her classmates. I knew she was smart; I love that she is kind.

As we reach these milestones, the birthday, the end of school, the accomplishments that make me reflective, I hope both that Samson is on the road to recovery so we can resume a normal life (not our normal, the other calmer kind) and that I can continue, as long as we do have struggles, to focus less on what I've missed and more on what we have. Like, for example, 108 neutrophils and a most extraordinary oldest child.