Dear Friends and Family,
My apologies.
It has been awhile since I’ve written you, but this update is positive.
Nancy made it through her six doses of AraC with no untoward effects. Similar to last time, her AraC chemotherapy caused a bone marrow crash, leaving her immunocompromised and anemic. (Just as it is supposed to do.)
Tomorrow Nancy will return home and there is other good news, too.
Nancy feels relatively decent. Even though this was her third round of “poisons” (as chemotherapy drugs are nicknamed), her stay this time was uneventful and benign. As before, there will be no oxygen tubes or IV medicines during our home “vacation.” Her medical team does plan to leave a permanent IV line entering Nancy’s right upper chest. (Thankfully, for now, it’s inactive.) The only reminder that she’s survived another bout with her life-threatening disease will be the changing of her IV dressing once a day. (That, of course, and the cute, fuzzy head Nancy will see when she looks in the mirror.)
The other evening as our entire family was celebrating the final night of round three, Jayna put it very simply: “Mom rocks. She’s got this chemo thing down.”
What’s next?
Our transplant pursuit continues as we await news of a willing and more refined match from the twenty-one potential donors identified by the National Marrow Donor Program.
When (and if) we receive word that Nancy has a bone marrow match from an unknown donor, we will have three questions to address:
1. Do we attempt the transplant or instead do two more rounds of chemotherapy?
2. If we decide to go for a BMT (bone marrow transplant), do we undergo what is termed a “full” transplant versus a less toxic procedure called a “mini-transplant”?
3. If we do go the transplant route, where (the University of Utah in Salt Lake City vs. far away from home) do we go?
Each question is serious. Each question has major implications.
As we get ready to leave for home tomorrow, Nancy is feeling about as normal as anyone can with leukemia. Before this last hospitalization, another negative bone marrow test confirmed that Nancy is still in remission. Being in remission is essential to any decision. And being in remission means there is still a chance to overcome whatever long or longer odds we face.
At this point, if we could write our own script, we’d continue indefinitely along our current path. We’d spend three quarter of our days on the Cancerland floor of the hospital doing treatments and spend the balance of our days in Woodland. (We would still call it “vacation.”)
Even though our lives would have changed drastically, we’d never look back. We could be satisfied with our current routine and not ask for anything more.
As long as Nancy is not suffering . . .
However, we don’t have that choice.
It’s time to look forward.
It’s time to think and plan.
It’s time to not only consider but also choose.
We will do our utmost to determine which treatment best fits Nancy and our family. A big decision is no longer an undertaking for the future.
The time is now.
On October 2, Nancy and I will seek a second opinion at the world’s largest transplant center, the Fred Hutchinson Cancer Center in Seattle, Washington. It’s a bit frightening to know that Nancy will have to transit through two airports filled with lots of people and their accompanying germs.
Our trip will be uncomfortable for Nancy. Her hair is still nonexistent. She will be self-conscious about an IV line that could be visible unless she wears clothing that hides it. There will be many issues and problems that I can’t yet imagine.
My first cousin Dr. Richard Winn, the chairman of neurosurgery at the University of Washington, has arranged for us to meet with his friend Dr. Fred Appelbaum, a world-renowned bone marrow transplant expert and deputy director at the Cancer Center—the birthplace of bone marrow transplants. The center is widely regarded as the “Mecca” for blood cancer research and treatment. We are hoping that Dr. Appelbaum will have answers to our questions.
Both our attending oncologist (Dr. Morton) and our local transplant specialist (Dr. Peterson) have polled other experts regarding the two treatment options: continuing with chemotherapy only or, if a good match can be found, undergoing a transplant. Unfortunately, the respondents were divided about equally. This leaves us with even more questions than when we began our journey.
Will Dr. Appelbaum tip the balance?
Will he be able to answer which type of transplant is best for Nancy?
Will we need to relocate our family to Seattle?
Tough questions will be a fundamental part of our difficult trip ahead. However, in the intervening time, we’ll savor the splendor of fall in the Uinta Mountains, hoping these next two weeks are filled with bright sunshine, colored leaves, and our dearest of friends.
Summary: Though it is risky, Nancy and I will travel to Seattle in a few days to meet with the transplant experts at the world’s original and most famous transplant center.
With love,
Winnie