Today is the first day of school in New York City. Instead of joining his friends at Beansprouts, Toby spent the day at Sloan where he endured even more than what he, Mooki, and Stephen have come to accept as "routine" - blood tests, transfusions, poking and prodding, various medications, long waits, and most of all uncertainty. Toby is not himself. His usual inquisitiveness and fascination with his surroundings have taken a back seat to a tired, exhausted, withdrawn, and wiped-out little boy. Toby has stayed in bed for most of the past five days, preferring to conserve what little energy he has. In the eight days since Toby had surgery on his neck he has been to Sloan as many times. This past Thursday he was there twice; after coming home in the evening after having spent the entire day at the hospital getting chemo and intravenous fluids, he made an unplanned visit to the emergency room until 03:00 a.m. because of a fever. Toby was back at Sloan six hours later for more chemo.
There has been no let-up in what has been an unusually chaotic week. In addition to surgery, chemo, ER visits, and foul moods Toby and family moved to their new place on Friday and are trying to adjust to their new home while literally spending all day and some nights at the hospital. Adding insult to injury, Toby's surgical site is causing him quite a bit of discomfort and pain. Mooki describes his skin as though it was "run over" and said that it looks like "road kill." The pathology report on the excised lymph nodes confirmed metastatic neuroblastoma. Fortunately, the bone marrow was clean of disease.
Today was especially hard because in addition to needing blood and platelet transfusions as well as pentamidine (a preventive monthly aerosolized medication to ward off fungal pneumonia), Toby also underwent several hours of a radiation simulation (a procedure to map the exact areas to be irradiated which requires that Toby be fairly still and cooperative). Toby also starts daily subcutaneous G-CSF injections (these hurt) today to boost his white blood cells so that he's not as susceptible to infection. As if that's not enough, an additional antibiotic was started because of the risk that the surgical site will become infected. This might not sound like that big of deal, but cajoling Toby into having to take one more medicine, every six hours for the next ten days is exceedingly difficult. Add to this the news about the lymph nodes and that today is the first day of school and one can appreciate just how hard and upsetting a day it has been for Mooki and Stephen.
Toby is scheduled to start radiation treatments to his shoulder on Monday. He will have two sessions a day for seven days, which will then be followed by restaging scans and bone marrows.
Many of you have reached out to Mooki and Stephen this past week. Mooki asked me to let you know that she and Stephen have read all of your e-mails and messages and that once they are a little more settled in and things are less hectic, she will update the blog herself.
Ed Clark, Christmas Guest
6 months ago