Trying to Get Home

Here's our Family House room. It just a room, no bathroom, sink, TV, but it's clean and place to crash and briefly escape from the confines of the hospital.

Sunday night when I returned to the Family House to sleep, this was posted on a guest door down the hall from us: (click on photo to read more clearly)

This morning I frantically began packing up and cleaning our room and washing our bedding and towels. But it wasn't due to the illegal drug activity. Oh my! This morning's radiation reading from the safety team was 2.8: good enough to be told we could go home after an official reading from the Radiation Safety Team later in the afternoon, the arm banding, and the MIBG scan. William has to wear a special bracelet for a month to notify any hospital in the event of an emergency that he has received this treatment since most healthcare facilities have never heard of it. The scan will reveal all the places the MIBG was taken up by the neuroblastoma cells. He'll have a follow up scan in 5 weeks, just before transplant, to see how effective the treatment was.

We rarely get too optimistic when things seem to go unexpectedly in our favor, but we never stop hoping for the best. Does that say anything about our exhausting journey? The nurse assured us we would be discharged, the final say from radiation safety was a YES, and the Nuclear Med Dept. rained on our parade out the door. They were backed up and wouldn't fit us in today. They can't schedule the scan until tomorrow (Tuesday) at 4 PM. I guess that's a price we pay for staying at a large hospital facility: they keep busy. However, we did take our discharge papers and ran for the . . . family house. (No funny pot smell today. Just a strong smell of cleaners and disinfectants.)

Pot or no pot, we weren't staying put after 6 cooped up days. We dropped our bags and headed out to find non-hospital food and fresh air. We walked around Giradelli Square and sipped hot chocolate; meandered through Fisherman's Wharf, buying and eating a fresh, whole cracked crab, (stopping at McDonald's for William); and roamed Union Square by foot, gazing at the beautiful Christmas lights.

Tomorrow we hope to continue the touristy thing in the morning before we have to report back to the hospital. William deserves a fun day before the world of doctors and hospitals swallow him up again.

Once we get home, William will need to remain at least a meter away from anyone for extended periods of time for 10 more days. He'll have several trips to the clinic to monitor blood counts and then we're back here next Friday for a stem cell infusion to boost his bone marrow in preparation for transplant on January 24th.

But for now, we'll just focus on getting home.