Gene’s update: 2-28-10

Wow….the whole month of February….today is day 46. And there are still no numbers. Now the docs are saying two to three weeks after the end of chemo they will expect to see some neutraphils, the key number that will allow Gene to go home. So we are 2 days into week three after the last chemo. Closing in on seven weeks in the hospital. The nurses tell us that it is better that he is not coming back too quickly, that is what happened last time, which is why they knew he probably still had some leukemic cells. They say that because his marrow had a double whammy….he did not have time to recover between rounds of chemo so it is taking longer to come back. All, they say, to be expected. So we are still in watch and wait mode. Gene is hanging in there really well. Still good attitude, still good energy, still race walking the halls daily. We both just can’t wait for him to be able to go home, so we can both, but especially he, sleep. Gene hasn’t had more than a 4-5 hour stretch of sleep in 46 days. We both agree, he just needs to sleep for a couple of days.

And then we’ll take a deep breath and think about the next phase. We found out this week that none of Gene’s sisters were a tissue match for his transplant. I took the news very hard, but Gene maintained is good attitude, and that, once again, helped me through. The complication risks are higher when it is a non-sib donor, and there is the wait for a donor. Gene is entered in the registry, and we’ve been told they are already doing a check with two possible matches. But even that can take 2-3 months. We’ve heard from 3-6 months to find a match. And in that time, anything can happen. Remission, if in fact we got there this time, which we still don’t know, is fragile with this kind of leukemia, so he could slip out. He will need more chemo, and each round has to take its toll. And there are the dangers of developing an infection. Although he will have enough white blood cells to come home, he is far from having a restored immune system, even for up to a year after the transplant. So, the reality of how long a road this will be is just sinking in. Having a sibling donor would have put us on the freeway. Now we still have the mountain to cross, but is will be a winding back road, with lots of twists and turns. Another lesson in acceptance.

We did have a little adventure this week. Doc must have felt pretty sorry for Gene because he told us that we could go outside for a walk.. The only other time Gene even stepped outside was the night they told us he would not be going home before the second round of chemo. We were allowed then, to go out onto the front foyer/entryway/driveway, look at the stars, etc. So this time, when he told us, he didn’t mention how far we could go. So we walked three buildings over to the Scripps Center for Integrative Medicine. Behind that building is a labyrinth. I’d discovered it when I was trying to stay calm during his bronchoscopy way back in week two or so. We went over under the waxing moon and walked the labyrinth. A small thing, but it was pretty cool and we felt like we were really daring and had escaped for awhile. Gene of course, had a mask on, and the next morning I immediately checked to see if he had a fever or any other warning signs that we’d crossed the line, but he has been fine. Doc just chuckled and said he hadn’t really intended for us to go that far.

Regarding the donor issue, several of you have asked how you might be able to donate. The way it works, from my understanding, is that apart from first-degree relatives (siblings), one has a 1 in 5000 chance of being a match for someone. What that means is that you cannot get typed just to be a match for Gene, but you can join the bone marrow registry, simply by giving blood in a regular blood drive and completing paperwork to say you are willing to be a donor. Your contribution would be “for the greater good”, not necessarily directed at Gene, but you never know….they told Gene that they’d be checking the registry daily. These days it is almost exclusively a process through blood donation, not the old way of extracting the marrow, literally. The website www.bethematch.org has information on the nearest donor event, usually through the local bloodbank, in your area. There is no cost, though contributions are welcome. I still don’t know really how ethnicity impacts the donor list, and recipient opportunities, but plan to ask those questions next.

So….one more thing. Some of you don’t actually know Patty and Jim, only what you’ve read here about how incredible they are, continuing to hold us up on angel wings, or as my friend Jocelyn says, raising the bar for what friendship means. So here is a photo:

The next update will have news of being home, hopefully!

g