August 29, 2019
“Dear Donor, I have wanted to write this letter for months, but I find it difficult to adequately express my gratitude in words. I can never thank you enough for giving my husband another chance at life.”
So begins a heartfelt note of thanks 4 years in the making, a note that describes a new outlook not just for a patient, but for his whole family.
In the summer of 2012, Steve and Peggy Williams were happily raising their children. Music-lover Lucas, then 10, athlete Cody, then 6, and budding gymnast Lauryn, then not quite 1, made for busy days in El Dorado, Kansas. Peggy served as a nurse in an ob/gyn office and Steve worked as a project manager for a facilities maintenance company.
But something seemed off with Steve that summer. He was always tired. He had night sweats. His appetite was poor, and he lost weight without trying. It was more than could be explained by busy family life.
“Steve was just not himself, and it was clear something was wrong,” Peggy says. “By November, I said, ‘I’m making the doctor’s appointment or you are. Which is it going to be?’”
Steve visited his doctor on November 29, 2012. His bloodwork revealed chronic myeloid leukemia, a type of cancer that originates in the blood-forming cells of bone marrow. Steve went directly to an oncologist in Wichita, Kansas, and was immediately admitted to the hospital to begin medication treatment. His white blood cell count – normally 5,000 to 10,000 per microliter in a healthy adult male – exceeded 200,000.
Blood and marrow transplant offers hope
Steve began taking Tasigna®, a medication designed to block the signal that causes leukemic cells to grow. This approach would control Steve’s disease for almost 2 years
“This worked very well for him at first,” says Peggy. “But at the 18-month mark, we saw a slight increase in his numbers. By October 2014, he was no longer responding to the medications. The disease was coming back.”
Still under the care of a Wichita-based hematologist, Steve was prescribed a new medication. But he was also advised to consider a bone marrow transplant. The medication, while effective against the leukemia, brought with it debilitating side effects.
“That drug made Steve horribly sick,” Peggy says. “He could barely get to and from work, and definitely could do no more than that. In February, he told me, ‘I can’t live this way. I can’t be a dad and a husband and everything I need to be while feeling like this.’ We decided to proceed with the bone marrow transplant.”
Steve was referred to The University of Kansas Cancer Center. Since Steve has no full-blood siblings, the Williams family worked with the cancer center's care team to identify an unrelated donor.
They found a perfect match.
“We took that as a sign that we were doing the right thing,” Peggy says.
Steve had his transplant on June 11, 2015. After a 30-day hospitalization and 100 days at Hope Lodge, which allowed easy access to follow-up care and protected Steve from dangerous infections, Steve was declared cancer-free.
“Steve is in what we call molecular remission, in which the gene that caused the growth of abnormal cells is absent from the blood,” explains Joseph McGuirk, DO, division director of hematologic malignancies and cellular therapeutics for The University of Kansas Cancer Center. “His quality of life is much improved. I am very optimistic that this nightmare for him and his family has receded into history.”
Positive changes after BMT treatment
Peggy and the Williams children are thrilled with Steve’s positive outcome. They’re using his health crisis as an opportunity to make family health changes for the long term.
“Steve is living life pretty normally now, and that is amazing,” Peggy says. “But we also took his diagnosis as a wake-up call for our whole family. We needed to eat better and exercise more. We want our kids to grow up healthy with healthy parents.”
Taking Steve’s close call to heart, Peggy herself joined a gym and lost more than 100 pounds. As a member of Team in Training for the Leukemia and Lymphoma Society – dedicated to giving back and helping fight for other blood cancer patients – she has completed 2 half-marathons and is preparing for her first triathlon.
“We found a positive in looking at our family’s health from a broader perspective and having the chance to make changes now that will make a positive difference for us for years to come,” she says.
A world-class care team
Peggy cites The University of Kansas Cancer Center team’s unparalleled skill and commitment as critical to Steve’s positive outcome.
“We had an awesome experience here,” she says. “Everyone is wonderful. They went far and above anything we ever expected. They were so attentive to us and concerned for us, but also made this as pleasant an experience as they could. They always recognized and remembered us.”
Dr. McGuirk also stresses the importance of the team approach in delivering high-quality care.
“We truly offer a spectacular team of doctors, nurses, pharmacists, technicians, unit secretaries and on down to housekeeping,” he says. “We are an organized, dedicated group very vested in providing the best care, and our patients see that. They in turn feel very secure and do better at complying with what we tell them. They know we are working for their well-being.”
Steve is back to doing what he loves, coaching Little League teams and enjoying his family. He receives local follow-up care, and his primary providers and specialists continue to communicate on his behalf.
“The referring physician is a critically important part of our team, on the front line of treatment,” Dr. McGuirk notes. “Whether a primary care physician, hematologist or oncologist, it is their job to recognize who and when to refer for specialty treatment and our job to work hard to return a healthy patient. The referring physician may be the most important team member of all of us.”
Peggy acknowledges one more crucially important teammate in Steve’s successful care. She shares with Steve’s unknown donor, “Life is a precious gift and you have helped extend it for Steve. Thank you hardly seems sufficient to express my heartfelt appreciation for your bone marrow donation.”