Day 55

Gene’s update: Day 55

What can we say? How lucky we are that Gene hasn’t had any complications during this long wait for him to grow his own white (and red) blood cells; how lucky we are for all the love and attention that continues to surround us; how lucky we are for such good care in such a nice hospital, with such a great view; how humbled we are by how many people out there are praying for Gene, sending positive healing energy our way……any other good ideas for how to keep Gene’s spirits up, feel free to send along!

He actually is doing great, considering. But boy oh boy, are we both tired of this hospital routine and so badly want to go home.

Among the other highlights: If you haven’t been on the blogspot, (http://www.genecentral.blogspot.com) there are some cool pics taken by Patty. Doc let Gene go outside for a walk, I think he has had four now, during the day. He walks the track over by the labyrinth at a good clip for about 30 minutes. He has really good energy, and our hope is that the sunlight and fresh air will help him grow those neutrophils. Doc did start talking some discouraging stuff around mid-week….talking aplastic anemia, empty marrow….floating the possibility that maybe he wouldn’t grow cells…..that the treatment, being a bone marrow transplant, would be the same. And we’re thinking….will he ever go home? But he also said that having given him two rounds of chemo back to back with no chance for his marrow to recover, it was not unusual for it to take so long. So a little window into the fact that medicine is both art and science and sometimes they just don’t know. It is more comforting, though, to have the illusion that they do know it all.

Then on Saturday as we were leaving for our walk, Doc called us over to tell us that they looked at a blood sample under the microscope and that there were “some” neutrophils. We got really excited. Then on Sunday they did it again under the microscope and there were no neutrophils……random sample of blood…..who knows. One number is going up (percent neutrophils), they say it isn’t as important, as the number they are looking for (absolute neutrophils), but right now its sounding like good news to us.

Gene had his remaining thin and wispy hair shaved off….or more accurately, the CNA shaved it…he actually looks younger. He’s got quite the hat collection going, comical and functional.

Patty and Jim are leaving at the end of this week. They have been here for two months! They have a college student to check in on, a garden to plant, parents to check in with, and their own lives to resume. They are doing it all right to the end…..I know I will pick up the pieces of my life and resume taking care of myself, but we have been so blessed. They have helped in more ways than can be named. They have helped me transition to this new life….and held my hand through the process. Hopefully, Gene will be home soon and that will make things easier.

And one more really important thing: Friends from SDSU, Susan and Nadine, are working on organizing a Bone Marrow Donor Drive at SDSU with Gene as the “Poster Boy”, literally. Although you cannot donate directly to Gene, during the drive there will be opportunities to get tested, it is as simple as a cheek swab. Susan reports that they (Blood Bank folks who organize it for the Bone Marrow Registry) seem to be encouraging folks to really use all means of networking (facebook, etc, etc) so that even people who can’t make it to the drive can contact an email address and get sent a kit. We are not sure yet if that is only for people in the SD region, but we will put the word out as soon as we know. It may or may not benefit Gene directly, but our hope is that we can recruit some students and others whose HLA type may match Gene’s more directly as ethnicity does matter, and he does not yet have a donor. And even if it does not benefit Gene, it is a worldwide registry, so it will benefit someone, or many others. So, we’ll be keeping you posted on that. I keep thinking that somewhere in Grant County (or Deming) there is someone who shares some of the same Genes as Gene! But maybe, hopefully even, right here in San Diego County.

Once again, I hope that our next update has the coming home news….in the meantime, pray for neutrophils, pray for a donor.