I am happy to say that today we are done with the fludarabine. Only one more dose of the cytoxan to go. We will still have to change diapers every two hours until Thursday at around noon though. We’ve started the immunosuppressants today, Mycophenolate Mofetil (MMF) and Cyclosporine A (CSA). There are, of course, a host of potential side effects. I could list them but the side effects seem to be the same for every drug. What I particularly love is with the MMF, the side effects are diarrhea and constipation………Hmmm, don’t they cancel each other out?

Although we didn’t culture at the time, it is pretty obvious that Rafi has once again developed a staph infection on her foot. It also looks like it has developed under her arm as well. We cultured the arm this morning and are awaiting results, but we already know the answer. Nothing happens in our household without some drama. So we are treating with IV antibiotics before the staph has a chance to go systemic, aka in her blood stream, and put her at any real risk. Add that little wrinkle to the fact that the side effects from the chemotherapy are starting to be a little more pronounced and we have a real ballgame.

It’s amazing to me that we are this close to transplant. For all intents and purposes we are at day -2. It’s very exciting. I know the actual transplant is a little anticlimactic but the symbolic nature of it is pretty amazing. We could have a new chance at life. While the past two years have been difficult at best and the next two will be anything but easy, it’s 4 or 5 years from now that I am thinking about. We are not only changing Rafi’s destiny but also Jackie’s and mine. Our life together, as well as our separate lives, have really been limited and pushed to the point of breaking at times. I am not the same person anymore, and part of me never will be the same. Many of my worst traits are now more pronounced. As I know some of you understand, EB gives you nothing but agida and takes away so much. The transplant isn’t a rebirth but it is a new start.

I’ll try to work harder at not taking so many things and people for granted. We have some really great friends that have been very supportive in so many ways. Some have disappeared and others have come out of the woodwork and really stepped up to the plate. As I see it now, I haven’t always been the best friend, the best family member, the best father or the best husband. For that, and to those people, I apologize. I hope, after this is over 4 or 5 years down the line, I’ll be strong enough, that there will be enough left, to make myself a better person for those that have stuck beside me, Jackie and Rafi.

It’s time to change a diaper now. I hope Jackie is deep under the covers, tucked in tight and sleeping soundly right now. She has two years of sleep to catch up on and she deserves the rest.