Day 63

Today began with a bridge walk under a full moon and a return home to a freshly waking boy with outstretched arms. After a big hug, Benjamin said he had an ache in his lower belly. It wasn’t nausea. It sounded like dull, broad pain. It dissipated quickly, but came back intermittently throughout the day, diminishing his appetite.

Benji is also showing some potential early signs of mucositis, a common complication of chemotherapy patients. The mucosal lining of the gastrointestinal tract, most commonly the mouth, gets so thinned by the medicine that it becomes easily inflamed. We’ve been so careful about his oral hygiene, using our homemade mouthwash now two to three times daily and brushing often–I hope I’m wrong.

Everything is worrisome during this prolonged period of neutropenia. Every ache, everything that enters (or exits) his body, every surface and interaction seems threatening. These worries are greatly exacerbated in my mind when I’ve had little sleep. I made a promise to myself for an early bedtime–one I intend to keep–and settled on my default worry remedies: research and kitchen prep.

When Benji’s tummy wasn’t hurting today, he felt great. His energy level remains high, and he’s happy. It’s so incohesive to watch his body move and to know what’s going on inside it. We enjoyed another long bike ride, several craft projects, and a bit of schoolwork. After reading up a little more on neutropenia, we went to one of our favorite produce markets (he loves their garlic pickles) and stocked up. He picked out lots of fresh fruits and veggies. I was so happy to finally get a smoothie in him this week, even if he didn’t finish it all.

Banyan returned from school and we hunkered down to finish his project. He did a brilliant job designing a board game based on a book he’d read. After we were finished and reveling in another delicious gifted meal, we all sat down to play his game. It was so much fun. He was a supreme big brother tonight, being extra patient with Benjamin, and reading to him before bed. My computer was fixed today (hallelujah) and one of the things I was able to accomplish was some middle school placement correspondence for Banyan. As I look forward with him, and look presently at him, I give big thanks for that boy.

There are many other things I need to take care of that require my computer, my phone and my time–but they are all very different than the things that came before leukemia. A couple of days ago, I submitted my formal resignation to the Board on which I’ve served for five years. A local magazine publishes a column I author bi-monthly; the last issue with my byline hit the stands this week. I know that there are big things happening in the world of maternal health, a world I used to feel consumed by; now, they float past me. I don’t feel their pull. I feel a different pull, and its force is unmatched. In some ways I feel like a person with a new identity.

Tomorrow we will meet with Dr. Moore, check on Benji’s absolute neutrophil count (ANC), and hold hands tightly during round five of his Erwinia shots. I have lots of questions going into the weekend, and looking ahead at the second half of Consolidation. This neutropenic period will continue for a few more weeks. There are people in this town (and others) throwing fundraisers in Benji’s honor. To protect his physical and emotional health right now, we just can’t risk him being in a big crowd of folks with their attention, however loving, all aimed at him.  We are beyond grateful, and appreciate everyone’s understanding when we aren’t present. We’ll get there. And when this is all behind us, the party will be epic, and you’ll all be invited.

5 thoughts on “Day 63

  1. I love the picture of the game at the beginning of this email. You used a word above I don’t know–“incohesive”–I’m about to look it up.


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