…or more appropriately, a new volume.
At Boston Children’s/Dana-Farber, new oncology patients are presented with the book at right, the “Fish book.” This is a thick binder full of LOTS of information, and ours grew in dimension over the past months. Its messages are varied and are mostly about managing chaos. Today, we were presented with the small book at left, the “Butterfly book.” It’s much more modest. Its basic message: “This is a challenging time, but odds are good. Here’s what we’ll look for.”
Over the last few weeks, we’ve already begun making this switch. Soren didn’t miss any school for two weeks and began to find a rhythm in class, he rocked his debut swim meet, and he started to faintly regrow hair. When his doctors saw him today, they immediately remarked “You grew!” He already looks healthier than his blood values would suggest.
We also began to make the evidence of treatment less present. His medication is now simply 1 pill, 3x a week. Contrast this with his prior assortment, now set aside:
All good! So what’s next? Monthly visits with his team in Boston, who evidently miss him. No more scans, because they offer more harm than good. His chest port, the tether enabling IV draws and medication, scheduled to be removed in a few weeks.
Harlan is so obviously overjoyed with his big brother being ever-present. There’s some high-intensity sibling electricity in the Cooper household these days, usually for the better. And we parents are learning to take deeper breaths and are trying to recover as well. I marked the passage of these cycles in my own way, by bicycling repeats of the local hill. Below are my bookends:
Thank you all for your deep and tireless support.