Day 49

Benjamin didn’t get a blood transfusion after all today. His hemoglobin count was 7.53 on Monday, and was expected to drop below 7 by today, because of the chemotherapy medicine Cytarabine (Ara-C). Today was Benjamin’s last day on his first “Ara-C Cycle,” two weeks of four consecutive doses each. His complete blood count this morning showed a hemoglobin level of 7.39.

Each physician has his or her unique perspective, and fluctuates on the conservative-to-progressive scale. Today, we saw Dr. Grana. She is all business, and it comforts me instantly. Her recommendation when looking at Benjamin’s counts today was to hold off until Monday on the blood transfusion. Her reasoning: Cytarabine decreases blood counts gradually, causing the lowest point, or “nadir,” 7-10 days after a given dose. Today was the 9th day after Benji’s first dose last Monday. So, each dose will cause its own nadir, spanning the time period between this past Monday and the end of next week. If we wait until Monday to transfuse red blood, Benjamin will be much more likely to receive only one transfusion during this cycle instead of two. The risk of receiving blood is a small one, but one she felt we could avoid a second time if we wait through the weekend. Had Benjamin been symptomatic–severe dizziness, headaches, shortness of breath–Dr. Grana may have had a different suggestion. But he was a ball of energy today. 

Benjamin is asking his own questions of the doctors. Today, he asked Dr. Grana if they did the lumbar punctures in the same place each time, and, his biggie, “How did all this start?” Her answers were honest and direct, without so much as a touch of condescension. Her response to his second question started with “I wish I knew.”  He is recording the questions in a new journal, which now has two questions for next week: “Why is the sleepy medicine white?” and “Why do you give me sleepy medicine for the L.P.?”

I sat there for a moment, after the doctor left the room, in total awe of my child. I took turns looking at the piece of paper showing me his blood counts, and looking at the boy in front of me showing his spirit and strength. Benjamin’s hemoglobin wasn’t the only low number on the page; his absolute neutrophil count (ANC) is the lowest it’s ever been, at a “profoundly low” 176. This was also expected, and means that his immune system is almost nonfunctional right now. The numbers and the boy in front of me didn’t seem to match. I’m completely amazed by him.

We are taking all precautions to avoid a hospital stay. But a sniffle and a sore throat have already shown up tonight. I gave myself a crash course and hit the health food store, ready to boost his immune system gently, without compromising the job the chemotherapy is doing.  Over the weekend, we will take it slow. We will watch for fever, congestion, and any signs of dropping hemoglobin. We hope to avoid inpatient status, but we are rolling with this, day by day.

Adaptability is key during Consolidation.  Today’s decision to hold off on the blood transfusion means that Monday and Tuesday will be far from predictable. During these 48 hours, Benjamin will get an intravenous dose of Vincristine, an intrathecal dose of Methotrexate (and the “sleepy medicine” that comes with it), the red blood “product” infusion and an intravenous dose of Peg-asparaginase. Each of these interventions has its own set of unique timing parameters and criteria. None of them will begin until Benji’s blood count Monday morning, which will start the domino effect of which comes first and what is scheduled when.

Whatever happens this weekend, or Monday, or Tuesday, or during the next three years, we will get it done, and we will do it with a mighty army behind us. Already, Banyan has transportation to and from school, should we need it. Our dogs will be taken care of. Our meals will come easily. Our safety net is secure and strong. Our family is so present for every request, even those for which we don’t even think to ask. I have a SunPass on my windshield. I didn’t purchase it. I didn’t even stick it on the glass. I just give thanks for it, and all it represents, every time we cross that bridge. I feel so fortunate that I don’t have to worry about the how. It will just be. The healing is happening.

 

5 thoughts on “Day 49

  1. Healing is what we are all praying for. You are a great Mom. Thanks for the posts, I rely on it to keep me updated.. . Love to Gilkey family.

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