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December 24, 2001 "Decorating the Tree"

Posted February 20, 2005

This video clip takes us back to the time of Simon's diagnosis with neuroblastoma. It embodies a great deal about Simon and his way of responding to life and to his pain.

In December of 2001, Simon was experiencing increasing pain in his left hip and the backs of his legs. He occasionally had a stiff neck. From a one-night hospitalization for unexplained pain symptoms on December 3rd, his diagnostic process included a bone scan, an MRI, a bone marrow aspirate, a bone biopsy, and another bone marrow aspirate with biopsy. We were in a whirlwind of mystery, consent forms, and short-lived moments of relief (that he didn't have leukemia and that he didn't have a bone infection).

On Christmas Eve, we were in Oberlin with Grann and Grandad. Simon was recovering from a bone biopsy performed on December 18th in his right ischium (sitting bone). The second bone marrow test had been drawn on December 21st. On the evening of December 21st, a Friday, the oncologist called with the report that Simon's marrow contained small, round, blue-stained tumor cells. They believed it to be metastatic neuroblastoma, but they would need a CT to be more certain. She asked us to be at the hospital for the scan on the first possible day: the day after Christmas.

What?! So, we changed our plan to delay our Christmas travel to allow Simon's right backside to heal before the 2.5 hour drive. We headed to Oberlin on December 22nd. During that surreal Christmas weekend, we went through the motions and had our celebrations. Rebecca, Randy, Emma and Schuyler joined us for dinner one evening. They are very connected to my memories of this time, as are my parents.

Decorating the tree on Christmas Eve was one of the many delights that Simon, and the rest of us, experienced. Simon was able to verbalize his enjoyment, as always. I remember distinctly when he told me that weekend that he was having a wonderful Christmas.

As I look at this video clip, I see Simon looking pretty pale and low-energy. He needs a haircut (we all did, but it had been a crazy month). I'm pretty sure I see him stepping gingerly and limping a little. That CT on December 26th showed massive disease in his body, with 3 solid tumors (left retroperiteneal (near the adrenal gland), right lung, thoracic spine) and multiple sites of bone and marrow involvement. He began chemo on December 28th.

Ah, but the video clip shows Simon in all his Simon-ness. He is enjoying the process of decorating, and he is paying special attention to the bird ornaments. Miriam is quite the chipper sight, too. I remember well how much her healthy visage and body helped me begin to see that Simon, by contrast, was a sick child.

From this same time period, Simon made a rather astonishing comment about birds the morning before he began chemotherapy. Take a look at SIMON SAYS for December 28, 2001.

December 24, 2001 "Decorating the Tree" (2.7 MB Quicktime movie, 1.8 minutes)
You may want to turn up the volume on your speakers to hear the audio in the clip.

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