When you’re facing one of the more momentous decisions of your life, one that is entirely out of your control, it’s often best to just put your head down and work on something that you CAN control. Today, while awaiting Soren’s PET/CT scan, Soren killed marauding pigs with flying angry birds (or ran around temples), Erika reconfigured online forms for swim lessons, and I edited a long-neglected manuscript. Even little parts of these tasks that escaped our control became major annoyances: a right hand encumbered by an IV, a lousy VPN, a bad file format.
Truthfully we’ve been silent for the last several days because there’s simply too much to say. Some great: Blue&White day with friends, a Boston Red Sox game (Sox win!) with a fabulous behind-the-plate view, a first Seacoast big-kid swim practice, soccer practice, mom’s birthday (bike ride and cake). Some annoying, like a day of school missed because of uncertain blood pressure and levels. And some simply too much to write in a blog, like what this scan means to us: a giant, pivotal fork in the road. Tears shed and sleep lost are just minor features. I’ve found myself increasingly incapable of answering the “How are you doing?” question.
I can say this: you would never know it from his activity, cheer, and normal 6yr-old behavior, but Soren is just narrowly avoiding a transfusion and mandated rest given his blood values. His hematocrit is 22, hemoglobin is 7.3, and ANC at 900.
**a few hours now past, scan over, 2h in traffic, awaiting for the phone call**
The scan results: agonizingly uncertain. The good: the PET scan, which tends to show more false-positives, was clear. The bad: the CT scan still showed a number of small abnormalities in his liver. Scar tissue, remaining lymphoma, or otherwise? The team at Dana-Farber will discuss, evaluate, and plan, with the outcome ranging from stay-the-course, to biopsy, or to a shift to more aggressive therapy. Next to Soren, I (Vaughn) am the optimist, and I believe that dead lesions take time to disappear.
This is a lot of heavy information for a well-read blog, and we apologize. We want you all to know how much we dearly appreciate all of the thoughtful gestures, donations, good vibes, and yearning you are sending our way. We feel them.