Dear Friends and Family,
The light streaming through the window is a little less intense in our corner of the world now; our lawn is hiding beneath a shallow blanket of brilliant gold aspen leaves sprinkled with an early season snowfall.
I realize that it’s been several months since my last update, but life has been terrifically unexciting. Summer and fall have been filled with bright sunshine, both inside and outside our Woodland retreat. Nancy continues to slowly recuperate, experiencing more good days than bad. In general, our family, and Nancy in particular, has savored each and every day without hospital food.
So why write now?
Today is October 27.
On our family’s revised post-illness calendar, October 27 is our biggest holiday. On this day last year, Nancy received her gift—the transplant.
Today is our day to reflect and be grateful. It is the day we are finally allowed by the National Marrow Donor Program to initiate the process that may lead to our finding out the identity of Nancy’s donor. Each member of the Winn family would like the opportunity to personally thank Nancy’s donor.
While Nancy went to Park City to obtain the ingredients for our celebratory dinner, I filled out the proper transplant registry paperwork and posted it in our mailbox with great satisfaction. I can think of nothing more gratifying than to shake our donor’s hand and have him meet Nancy’s many friends and supporters. If we are able to contact him and he consents, we plan to fly him to Park City for a big party in his honor. We’d like him to meet as many of you as possible.
When Nancy returned home in the early afternoon, I inquired, “Hi, Nancy. How was Park City?” My bride gave me a look we exchange frequently. “What do you think?” dangled from the corners of her lips. She won’t ask. It’s part of a game we both enjoy—which of us will break first?
“It was fun, Winnie. I ran into Jane at the Albertson’s and Susan at Linens N Things. Both asked about you. And I found a razor for Jaret.”
(Nancy finally has enough strength to make local shopping trips, and her taste buds have finally recovered. Much to my delight, she is also cooking again.)
“Can I have a sip, Nancy? I’m dying of thirst.”
Nancy picks up the sixteen-ounce Coke cup sitting between the driver and passenger seats. “Sure, Winnie,” she said as she handed me the half-empty drink. After taking a big gulp, I spit the contents almost across the driveway. “What is that?”
Between fits of laughter, Nancy replies, “Just one of my ‘combos’—I start with Mountain Dew, combine it with lemonade, and then add vanilla Coke. Oh, and raspberry tea at the very end. I forgot—you don’t like tea.”
I surrounded her with my arms. “You really got me. You haven’t made one of your ‘combinations’ in a very long time. It must be a special day.” Then, softly rubbing her head with the back of one hand, I could no longer ignore Nancy’s now beautiful hair. “I like your hair. Do you?”
Nancy shook her head from side to side, pleased with her pyric victory. I had commented first. “Yep, I do. I wondered if you’d notice or at least would say something.”
I twisted her new curls between my thumb and index finger. Over just an hour or so ago, those curls hung two or three inches longer. It was her first haircut in seventeen months. Bald, long, or (now) short, she always looks great.
Nancy was diagnosed with AML on May 29. After achieving the first remission, we were told she had, at best, a 5%–10% chance of survival. With the transplant, her chance of survival increased to 50%. And by a hundred days post-transplant, we heard incredibly good news from her doctor: “Nancy, you made it through an extremely rough procedure. By making it this far, you have an 80% chance of a cure.”
On this day last year, less than two ounces of bone marrow stem cells flowed into Nancy’s vein. And the news from Nancy’s doctor today when he called with results was the most wonderful news that a person can receive.
“Nancy’s one year (post-transplant) bone marrow shows no sign of leukemia. The donor stem cells are healthy. A recurrence of leukemia will get more and more unlikely as the months pass. By two years, Nancy’s risk will be less than 5%.”
Our next challenge?
We will need to get Nancy off the remaining bone marrow–suppressing medicines so she can be around larger groups and travel again. Right now, heading into the winter flu season, she still is at greater risk (than you or I) for normal and unusual infections. Since her new immune system is literally in its infancy, Nancy has to redo her “baby” shots such as polio and tetanus in the next six months once she tapers the medicine that has been suppressing it.
And after that, the next big milestone according to Dr. Pulsipher?
“Once Nancy is off her immune-suppressing medicines and makes it another three months, have a big party. At that point, it’ll be highly unlikely her graft will attack her organs. And she will be able to resume a more normal life without much worry about germs.”
You may not hear from me until close to the three month’s post-medicine day, but I can promise each of you that you will be invited to the big party.
Summary: On her “new” birthday, Nancy had her first haircut in almost a year and a half. We also heard the sweetest of results from her recent testing. There is no leukemia in Nancy’s body. Simply put, her doctors couldn’t have been more pleased with her progress. Nor could we.
My very best,
Winnie