In less than six weeks (and hopefully a few weeks sooner) Jacqui will give birth to our first born, who as a fetus, we have nicknamed Lester. I am not sure where the name came from. We called the fetus Junior for a while, but at some point early on I called it Lester, and the name just stuck. I apologize to all the Lesters out there, but the name has a funny ring to it, and it makes us laugh each time one of us talks into Jacqui’s belly-button microphone and says “hi Lester.” We, of course, do not know the gender of the baby, so if Lester turns out to be a girl, I suppose we should start putting money towards her therapy bills now.
Our firstborn is arriving at an obviously crazy time in our lives. While we knew that we would have to deal with me and my wacky lymphatic system some day, this is not what we envisioned for our first, or for that matter, any of our children. When I was diagnosed, and then got past the one-year-with-no-change-in-my disease hurdle, the odds were with us that we’d have significant time before I had to go through delymphomatization. Screw you Las Vegas bookmakers who put the over/under at five years!
There are moments when I look at Jacqui’s belly and wonder what lies ahead for little Lester, Jacqui, and I. At what point in Lester’s life will I tell him/her about what I went through from when she/he was little more than a clump of cells? How can I make sure that Lester doesn’t grow up afraid of losing dad, but realizes that there are no guarantees that my lymphoma will not come back some day, that I’ll need to be retreated, or that that treatment might be more brutal than what I am going through now? How will I let the little dude(tte) and future sibling(s) know that everything will be ok?
Should I need to be retreated, one option, the “home run” of lymphoma treatments, would be an allogenic bone marrow transplant, which means that a family member or total stranger donates their marrow to me (this is different from an autologous bone marrow transplant, where I donate my own marrow back to myself. The auto-transplant is a safe procedure, one that I will be going through later this year as part of the process of delymphomatization).
Donor (allogenic) bone marrow transplants, while potentially curative, are also very dangerous (a 10-25% mortality rate). So it is not, as you might understand, an attractive option, except as one of last resort. FOR THOSE OF YOU THAT MIGHT BE CONFUSED, I REPEAT, THIS IS NOT THE PROCEDURE THAT I WILL BE GOING THROUGH, SO DON’T FREAK OUT. I HOPE TO NEVER HAVE TO GO THROUGH THIS, BUT…
Hopefully the current treatment does its job forever and we never, ever have to think about IVs, neutropenic diets, and delymphomatization again. Lymphoma treatments are evolving quickly, and the need for such brutal cures will hopefully be a thing of the past soon. But should I ever need a donor transplant, there is a good chance that the marrow that saves me could come from my firstborn. At birth, we will be collecting Lester’s umbillical cord blood, and it will be stored somewhere in the Arizona desert, where I hope it will collect dust forever, or be donated to someone else in need. But should I ever need it, and Lester’s marrow is a match to mine, it’s there. And should I need it, and Lester’s immune system in the form of his/her marrow saves my life, it will be a miracle, our lives literally meshed together, father and child as one in the ways of medicine and in life. And to Lester I will forever say thanks and love.