Tuesday, February 3, 2009

City of Hope and a first decision made...

We went out to City of Hope and toured the place, including perhaps most importantly the hospital for stem cell transplants. It's a beautiful campus, and the hospital opened only three years ago. It's very bright, a beautiful building with a lot of common places that have unobstructed views of the mountains, etc. It's also very technologically advanced and the floor dedicated to neutropenic patients was very impressive. We went to tour it and passed through two airlocks to get into the section where air is hyperfiltered and completely exchanged every 15 minutes, etc. If I stay there, I won't be getting sick, I don't think.

Unfortunately the rooms themselves are dismally small. So much for my hopes of writing music, playing video games, working, etc. They look like they are about 150 square feet plus a small bathroom. All of a sudden, a condo in Little Rock looks pretty good...

Which brings us to Big Decision number one. I'm going to do induction in Arkansas. It makes too much sense not to do so. As I may have written, in the words of someone I've encountered who is going through BB's program right now...

It is not just about mirroring the treatment regime. There are many more subtle aspects to the team's approach here that no doubt have a very positive effect on their outcomes. Their resources are unmatchable. They can generate lab results faster than anything I've ever seen. They track everything on an almost daily basis, looking for potential red flags or signs of trouble that can be headed off at the earliest. For example, they routinely do blood cultures from my blood draws, just in case I get sick they will already have something growing in the lab and will know exactly what to treat it with. Typically cultures are only drawn when you are sick, and then it can take up to 4 or 5 days to identify the particular virus or bacteria. Everyone is put on Tamiflu right away, to prevent or lessen any flu events. I've had the flu for the past 3 years, twice developing into pneumonia. No preventative measures were ever taken in my treatment in Denver. Before a new patient is seated in the infusion room the chair is wiped down with alcohol. I'm sure there are many more differences that are unknown to me. But I'm confident the results achieved here are not due solely to the combination of chemo drugs.


So I'm going to do induction there, unless my questioning of BB's resident yields some unwelcome surprises. We spoke with SF about this and he agreed it was smart. He also suggested doing the stem cell collection there, since during collection there are additional elements to the protocol. He did think we could do transplants at City of Hope, and I do think he's an excellent doctor and I believe the quality of care would be excellent -- plus it would be nice not to be away from the kids for such a long period of time. On the other hand, the hospital rooms are like little dungeon cells.

We'll be looking into condos in Little Rock, and then looking into whether or not insurance will be sensible. A condo for a month is less than a hospital room for two days, and if I did the induction at City of Hope, I'd be hospitalized for a week per induction cycle, so if they are sensible, they'll spring for the condo. We'll have to see. Based on previous behavior, I'm not expecting reason to prevail.

Meanwhile, I am compiling my list of 101 questions and will hit Dr. CS (BB's resident) up with them soon.