Day 503

Day 503

Today felt a lot more manageable than yesterday did. I spoke with the clinic nurse this morning about Benjamin’s toe, and she asked a lot of thoughtful questions. She feels we are taking the proper precautions and doesn’t think antibiotics are necessary. I agree. It was nice to get the validation though. And Benji’s steroid “afterglow” is waning, thank goodness. He was sweet as pumpkin pie after school today. He was a bit (a lot) manic at bedtime, but in a happy way.

At lunch, I was treated to the company of several friends who have children at Banyan’s middle school. It is always so rewarding to keep tabs on our big kids this way, comparing notes and learning from each other’s experience. It makes me feel much safer navigating these pre-teen waters with company.

Banyan didn’t feel well after school and sat out from football practice this evening. It meant we ate dinner as a family at a reasonable weeknight hour for the first time in a long time. Dinner at a reasonable hour means Benji takes his medicine at a reasonable hour, which means that everyone gets a good night’s sleep. As I was chopping cilantro, I thought of my Sarasota friend whose daughter shares Benjamin’s diagnosis. They live in our neighborhood, and Ava and Benji have been on a very similar path. Like Benji, Ava failed to achieve remission after induction. She is also allergic to PEG Asparaginase. On Monday, they went to All Children’s for Ava’s third bone marrow aspirate to test for remission again. They were told they’d get the results tomorrow, and I remember how long that wait felt.

I put down my knife and cilantro and texted Ava’s mother, “So. Tomorrow?” She texted back. “No. Laura, I got the results.” I held my breath as I watched the little dots on my phone signifying her typing. When I saw her next text–“0%”–I lost it. I was bawling right there in the kitchen. The boys came running. Benji said to Banyan, “I think she’s happy!” I hugged them both. I was very happy.

Ava’s mother told me that she had saved the picture I posted of Benjamin’s “MRD 0%” from last May. She had set it as the background on her phone and on her husband’s phone prior to the bone marrow aspirate, and printed it and hung it up in her kitchen. She was trying to draw energy toward that outcome for her daughter. I know how she feels tonight. It felt so good to share the feeling with her. It is a feeling I could never properly describe, and one I will never forget, as long as I live.

 

5 thoughts on “Day 503

  1. I am so happy for Ava and can’t get over what an amazing presence YOU are in your family’s life and the lives of others. Thank you for sharing your experience, for modeling such incredible love and courage. determination, resilience, presence, authenticity, kindness, compassion. xoxo

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