Day 5

We got a good night’s sleep last night.

Today was Tuesday, so the doctors had walking rounds. Dr. Moore isn’t on call this week so we’ve been talking with Dr. Wishnew and her team. We got some great news–Benjamin has ZERO percent leukemia blasts in his blood. Again, we know there are still stubborn cells in the marrow–but we’ll take this news happily.

Other reports from this morning’s blood draw, while completely normal to the physicians, raised some questions for Michael and me. Benji’s hemoglobin count was 7.6. The protocol is to do a blood transfusion once that count gets below 7. So, that’s likely in the morning. One more advent of modern medicine for which to be thankful; one more intervention that carries risk.

The other new count we’re keeping an eye on is his ANC (absolute neutrophil count). This is the percentage of white blood cells that are able to fight serious infection. When this number is above 500, Benji can fight infection somewhat normally. When it’s below 500, we should limit visitors, and take other precautions you would expect with a compromised immune system.

Watching this ANC makes us think more about our home life after we leave this place. Right now, we get to know what this number is every day. At home, we will have to go by the most recent number we got from an outpatient visit. This is one of many new judgement calls we’ll have to make. Again, I found myself drawing parallels to being in the NICU eleven years ago. After a few days, you become dependent on the beeps and numbers.

During walking rounds we also learned that one of Benji’s upcoming chemo meds has been known to compromise certain heart functions, so every patient slated to receive it has to have an EKG and a sonogram. These both happened today. More new people to meet, more new things happening to Benjamin.

By the time all of this had passed, Benji was hungry but didn’t want to eat ANYTHING. He kept saying there were “cracks” in his mouth. I examined, the nurse examined, the doctor examined–totally healthy. Just another sensory effect of the chemotherapy. After several other attempts, we succeeded with a strawberry milkshake. Such a relief to see. He hasn’t eaten since.

The events of the morning wore him out. As he napped with Aunt Sarah this afternoon, Mike and I took a walk to discuss logistics for the rest of the week. It was so nice to get a breath of fresh air. We ended up at the bookstore down the street. I was excited to be able to research nutrition for children with cancer, but there was nothing. I’m learning that there is a huge gap in the market for this kind of information. I’m looking to creative and wise resources. And my wheels are turning.

On the way back, I stopped at the church next to the hospital; the church that gave my dear friend strength when her son was here for a head injury just a few short months ago. I thought about the mama I met today whose son had to have 90% of his blood removed. I thought of the babies on our floor who seldom have visitors. I thought about the fact that I have absolutely zero doubt that we will make it through this. I said a silent prayer to sweet Mary, and took a very deep breath.

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