Friday, November 5, 2010

Do We Want a Lead-Lined Room?

I try not to slip and call our hospital room "home", but sometimes it happens. Since September 28th, we've been in the hospital 26 days. But who's counting?

William has been fever-free since we were admitted and his blood cultures are still negative for any bacteria growth. This is good since these are both criteria for discharge. However, his ANC is crashing and is probably at 0 as I type (no active immune system). Typically, this means we can't go home until his numbers rise above 500. Last cycle, it took 6 days for his ANC to start recovering. I don't want to stay 6 more days!!! Fortunately, the doctor is willing to put William into a small group of exceptions due to his comfort with our care at home (and probably due to my constant probing of the possibility and expressed desire to be home for William's birthday.) So, with fingers still crossed and hope alive, William will be discharged in the morning.

Other noteworthy news:
Dr. Lee, one of our oncologists, informed us that UCSF has a neuroblastoma research team that is interested in William, or more specifically, his case as a high-risk, neuroblastoma cancer patient who needs additional treatment after the standard protocol. They use MIBG, a radioisotope, in therapeutic doses to fight the neuroblastoma cells. Basically, they administer very high doses of this highly radioactive substance and it helps fight stubborn cancer cells. As a result, he is put in an isolated, lead-lined room to minimize contact/contamination with medical staff, parents, and other patients. During the first 24 hours, parents are allowed 30-45 minutes of direct contact with their child. The visitation time increases each day as the radioactivity decreases. Is this what it takes to get a private room?

UCSF is reviewing William's medical file to decide whether or not he is a good candidate for the treatment. It was first administered in 1999, but is still considered experimental due to a relatively small number of children with high-risk neuroblastoma. We will meet with them in the next two weeks to discuss the details and then Ryan and I will have the final say if we will have William participate. Dr. Lee thinks William should participate if he qualifies. It's very sobering to think that although William has come so far and done reasonably well, he still in a steep uphill battle.

Everyone says we are handling things well. Perhaps we are and frankly, I don't want to consider the alternative. (Then I'd be popping a very different little white pill!) Sometimes I would like to burst into tears and convince them otherwise. I know we won't be given more than we can handle, but what do I need to do to show that we're there?


  1. Happy birthday to Will, and happy sanity , at least temporarily, for the rest of you all! Shouldn't vanilla Ice-cream, or whipped cream, or white frosting boost his white cell count?

  2. i laughed at your last statement... i'm still smiling... julie you are so awesome. ryan you are so awesome. when i get my big trial or trials in life one day...cause i know they will come, i'll be re-reading your inspiring courageous words. i love you so much!