Dear Friends and Family,
A significant portion of our first week home has been spent negotiating the “insurance quagmire” as we consider if Nancy should attempt a bone marrow transplant, or BMT (also sometimes called a stem cell transplant). There are multiple forms for the many doctors to fill out, permissions and releases that are needed by the hospital and insurance company, and a never-ending myriad of phone calls. (The list is long, but I am persistent to say the least, and I can’t help but wonder how someone with less understanding or determination can be expected to navigate such a detailed process.)
Even more important than the paperwork and financial aspects related to Nancy’s hospitalization has been the identification of a suitable donor. (I believe I mentioned in an earlier note that Nancy, her brother Jim, and her sister Linda had their bone marrow “typed.” Unfortunately, neither Linda nor Jim’s bone marrow match Nancy’s.)
Once I obtained the approval of the insurance company to proceed, the Human Lymphocyte Antigen (HLA) pattern (type) used to identify Nancy’s unique bone marrow was sent to the National Marrow Donor Program. The process is sort of like a computer “dating” match for blood cells. After sending in the final paperwork yesterday, we only had to endure one restless night worrying. Today, we learned there were twenty-one potential donors. (Keep your fingers and toes crossed.)
Now the potential bone marrow donors will be contacted, questioned again about their present health and continued willingness, and then retested for the next set of more specific blood compatibility markers. This next phase can take from three weeks to six months. The process is a lot like Nancy’s blood talking to the donor’s blood and having several “dates” to see if a serious relationship is possible.
In the interim, if we decide to proceed with a transplant, the next question is where to do the procedure. In “transplant-speak,” Nancy needs a MUD procedure. A MUD transplant is not dirty in any way; rather MUD is the abbreviation for matched unrelated donor. Only one local facility near Park City performs MUD transplants—the Huntsman Cancer Center, which is part of the University of Utah in Salt Lake City. Huntsman is a smaller transplant center than, for example, the Hutchinson Cancer Center in Seattle or the facility in Houston at MD Anderson Cancer Center.
So I have a new project.
What are the cure rates at these three locations?
What type (mini vs. full) of MUD transplants should we consider?
What are the “logistics” if we move Nancy and our family to Seattle or Houston?
Meanwhile, Nancy will undergo another round of chemotherapy to ensure she stays in remission while we figure all this out. And we will return to the “penthouse” floor of LDS Hospital in another six days. (I’d be struck by lightning if I told you I am ready.) In between all these tasks, our time at home has been filled with togetherness, fun, and peacefulness (when we are not thinking about the future).
Nancy has been exercising, eating, and mentally preparing for what lies ahead, while I have been constantly on the computer and phone. In all honesty, I am a wreck trying to sort through our next challenges, but Nancy has a different take: “I’m ready for the next round. After all, what’s the alternative?” Somehow her sense of humor will drag me back to the rollaway on the eighth floor, smiling and willingly.
Lastly, I would be remiss by not mentioning that we are fortunate to have some physician cousins on my side of the family. (Thank you, Sam and Richard.) Invaluably, they are helping me contact out-of-state experts for their opinions on which procedure might be best and where to obtain treatment. I suspect the decision will not be clear cut and will require a certain amount of “best guessing” on what feels right.
Which is where all of you come in.
Your constant support and energy continues to give us the resolve to forge forward and the strength to choose a direction.
Summary: It has been great to be home with Nancy feeling so good. Especially since it has been time to decide if we should proceed with a transplant, what kind of transplant we should choose, and where we should have it.
Thanks and love,
Winnie