Dear Friends and Family,
We are home now and everyone is tucked safely between the sheets. So I want to explain to you what will happen in the ensuing days, weeks, and months ahead.
Nancy will enter the University of Utah Hospital in three days, October 17. Once there, she will receive six days of toxic chemotherapy. The panel of drugs will completely obliterate her bone marrow over a nine-day period. By far, this upcoming period will be the most intense (and therefore toxic) chemotherapy Nancy has received since May. And this phase is called “conditioning therapy.” The drugs are meant to totally destroy her existing bone marrow cells, thereby setting the “conditions” for her new bone marrow cells. In theory (and hopefully in practice), this therapy will destroy every cell of her existing and potentially leukemia-harboring bone marrow tissue.
After the next ten day’s chemotherapy ordeal, she will receive her MUD (matched unrelated donor) transplant. Many of you have asked if a bone marrow transplant is an actual operation. It is not. Rather than an actual surgery, Nancy will receive her new bone marrow cells via an IV catheter that enters a large vein in her chest, just like any other medicine or the many blood and blood product transfusions she has received in past months. Quite miraculously, the special donor bone marrow cells will know where to look for a “new home” outside of Nancy’s bloodstream.
Once inside Nancy’s bones, we will need to wait for an “engraftment.” This is where the donor’s bone marrow cells will, with any luck, replace Nancy’s natural bone marrow tissue that should have been “destroyed” by the potent chemotherapy. During this period, once again, Nancy is at great risk for unusual “opportunistic” infections as well as bleeding.
At this point, Nancy will have zero natural immunity, zero natural ability to clot her blood, and zero ability to make her own oxygen-carrying red blood cells. She will survive on blood and blood product transfusions for up to three weeks. The earliest Nancy might be able to leave the hospital is four weeks after her transplant, though six weeks is probably more realistic (and only then if there are no complications). We’ve been quoted a 20% death rate during this first, critical phase.
When Nancy leaves the hospital, she will move to an apartment that we’ve rented in the Sugar House area of Salt Lake City, about eight minutes from the University of Utah Hospital. Our transplant “contract” requires us to stay close to the hospital for a minimum of three months because the critical landmark of success is one hundred days post-transplant.
The major worry during this “out of the hospital” post-transplant period is something called “graft-versus-host” disease, a condition where the donor graft attacks the body it has entered after the transplant. During these three months, we will be monitored very closely with frequent outpatient visits to the Blood and Marrow Transplant Clinic (BMT Clinic). On the day of our recent orientation meeting, we visited the BMT Clinic and witnessed a lot of bald folks wearing specialized masks to avoid infection. (At this point, we can’t wait until Nancy has her very own anti-infection mask.)
So that’s the summary for the next leg of our journey. Not surprisingly, we have no doubt it will be a very long and very difficult road to travel. But Nancy, as best as I can tell, seems prepared for what lies ahead.
As I turn to look at her now as she slumbers beside me, I observe a whisper of contentment on her lips that shape a faint grin. I wonder if she is dreaming of her eventual return to our comfortable bed, her health fully restored?
I dream too, but my dreams are “day” dreams. (I am experiencing a nervous period where I have great difficulty sleeping, so I daydream instead and try to picture her prospects the way I want them to be.)
We are about to take a very big risk.
We hope to win big.
But today, the mountain seems steep and the climb very long.
I can’t yet see the top.
When I “dream,” I force myself to imagine snowflakes lightly floating outside our Woodland home’s bedroom windows, covering the trees’ bare branches like the softest and fluffiest of frosting. I gaze at Nancy beside me and concentrate on how it will feel to share a white winter wonderland when she comes home to the bed in which she now lies. At best, it will be a long time from today.
As I’ve said to you before, I’ve never much been one to anticipate my next day off, my next vacation, or even my next special event. Living in such a wonderful place as we do, I’ve been too busy enjoying the present to anticipate the future. Not today. It is a different chapter in my life. I want the next one hundred days to pass like a quiet storm in the late evening. I want to wake up from my “dream” to bright daylight as if nothing happened during the dark hours of night.
The address of our new home will be: Nancy Winn, Patient Extraordinaire, 5th Floor (I’ll send the exact room at some point), University of Utah Hospital, 50 North Medical Drive, Salt Lake City, Utah, 84132.
P.S. We will be unable to find out much about Nancy’s donor for one year. As part of the donor-recipient agreement we signed with the National Marrow Donor Program (NMDP), we are limited in finding out more about her donor. Likewise, he knows little about Nancy. With mortality rates so high, the NMDP feels it is best to reveal only the most basic information to either party.
But we do know this: The NMDP did reveal that the donor is a male, with A-positive blood type. Thankfully, we know he consented to give us his stem cells removed directly from his bone marrow. We asked for this method because this technique of collection carries a lower likelihood of graft-versus-host disease.
Without doubt, it is crystal clear to us that Nancy’s donor is truly our “angel.” Please send him your extra positive thoughts, appreciation, and gratitude.
Summary: Nancy begins her ablative chemotherapy in four days, and (if all goes well) we will reside in the hospital for four to six weeks and then live near the hospital in Salt Lake City for three months before returning home.
With love,
Winnie