Day 651/23


Benjamin slept in this morning. When he woke up he seemed a little down. Withdrawn. I sat with him and gave him space at the same time. I think he was just tired. Soon he was as spunky as usual, and we started our day with some schoolwork and music therapy.

Benji is profoundly neutropenic now. His absolute neutrophil count (ANC) is just 90. At morning rounds, I got the rest of the usual numbers–platelets 19,000, hemoglobin 9.0–and some specially requested ones as well. I was given the batch numbers for Benjamin’s Erwinaze shots. He did receive the batch that was released with particulate matter.

I asked lots of questions. I was assured that the pharmacy had reconstituted the Erwinaze per the special instructions issued. I was assured that a reaction from anything that didn’t belong in those syringes would have began as localized inflammation at the injection site. Benjamin is fine. This is not something I need to worry about.

I told our ARNP that I felt so passionately about this shortage not only because of our friend who isn’t getting her medicine, but because it seems almost certain now that Benjamin got the last medicine in the building. He was so close to not having any himself. I told her I felt like he was prioritized because of the high risk category his relapse has put him in. She looked at me with honest, kind, empathetic eyes, and said, “He was.” Her expression made me want to cry; with gratitude that he got what he needed, with heartbreak that he needed it in the first place, with anger for my friend and for the other children who are going without, and with sympathy for her as well. No health care provider should have to choose which of their patients get medicine and which do not.

My dear friend Maggie came to see us today. She brought Benjamin quite a special gift: a medicine stick, made and adorned by her, with special gifts of the sea from our favorite beach when the boys were little. It was beautiful, and he was in awe. She kept him entertained while I took a shower. We all played games together. It was so good to see her again. I miss our sunrise bridge walks. I miss the morning air. But I know this season will be short, and these days are so important.

In the afternoon Benji and I had a Lego building marathon. Michael and Banyan came up for dinner and brought some more magic tricks with them for Benji to master. It always feels so good to see their faces again.

After his bath tonight, Benji started the prophylactic antifungal medicine that is protocol when his ANC dips below 200. I’m curious to see what the morning blood draw will yield. This morning there was nothing in the “blasts” category, but they sent Benji’s blood to pathology anyway, just to be sure. No news is good news.

Benjamin’s marrow is in recovery mode now. We will try and prevent any infections while we await his lumbar puncture and bone marrow aspirate next week. I look forward to a few days of sweet company and, hopefully, little intervention.

3 thoughts on “Day 651/23

  1. I love the medicine stick. You have so many talented friends. Give Benji a BIG HUG from me. Love and Prayers

  2. I’m in awe too….That medicine stick is pretty awesome! I know this shortage is a hard balance for you as you were told Benji took priority while others are going without it now but I also know what an incredibly fierce advocate you are! It is unacceptable and it must be resolved! I love your empathy for others and how you have taken action against this. Stay strong mama and I pray this will get fixed soon so these kids can finally get their medicine. xoxo

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