At Celebration of Life event, cancer patients share their stories of their transplant journey
By Amy Albin
Kathryn Naftzger, 21, still remembers the shock of being diagnosed with acute lymphoblastic leukemia in April 2016.
Over the course of her treatment she experienced good days, bad days and others that fell somewhere in between. She suffered fainting spells, fevers, pancreatitis, swollen cheeks and more.
But she also enjoyed many milestones: enjoying a bowl of strawberries after months of being unable to eat fruit; being able to dress herself; learning to walk again; going out without wearing a mask; vomiting only once a week instead of every day.
And her Christian faith sustained her through the worst of it, she said,
“Somehow I’m here today and was able to take a class this summer,” said Naftzger, a UCLA senior majoring in microbiology, immunology and molecular genetics. “It’s incredible what an immune system and a little muscle in your legs can enable you to do.”
Naftzger was one of 11 speakers who shared their stories at the ‘Celebration of Life’ event hosted by the UCLA Health Bone Marrow and Stem Cell transplant program on September 12 at Ronald Reagan UCLA Medical Center.
The annual event, which began 16 years ago, brings together hundreds of patients with cancers of the blood or bone marrow who have undergone a bone marrow or stem cell transplant. They are joined by family members and medical staff who care for them.
“We hold this celebration because it is an opportunity for our patients and their family members to gain emotional support from each other and a vote of confidence to others currently undergoing therapy,” said Neela Patel, a nurse case manager with the unit. “It also gives our staff the joy of seeing patients after they’ve been through the intensive transplant journey and are now getting back their lives.”
Mike Huntley, the husband of a patient, said the gathered represented a club – not one that most would have wanted to join, but a club nonetheless.
“This club sees the world differently than people who are not in this club,” said Huntley, of Long Beach.
Huntley’s wife, Mary, was diagnosed with acute myeloid leukemia in 2005. She went into remission, but had a reoccurrence in 2010 and died the following year.
After losing her mother, the Huntley’s daughter, Frankie, wanted to do something for the patients on Ronald Reagan UCLA Medical Center’s sixth floor, where the family stayed during Mary’s treatment. Rather than write a check, the Huntleys began distributing iPads to patients so they could stay in touch with family and friends via Skype, the software app for video chats and voice calls
The Huntleys are still trying to give back. Frankie, now 17, is working with hospital staff to convert a meeting room into a ‘zen room’ for sixth-floor families to relax and meditate.
UCLA Medical Center was one of the first medical centers to perform bone marrow transplantation in 1968. In 1973, the UCLA Bone Marrow Transplantation Program was formally established and since then, UCLA has performed more than 5,024 transplants.
The program recently opened an Outpatient Stem Cell Transplantation Program, the first of its kind in Los Angeles. Instead of staying in the hospital for months, the program allows patients undergoing certain types of stem cell transplantation to receive treatment in an outpatient clinic.
Richard Davies, 70, a multiple myeloma patient, was one of the first patients to receive a transplant in the outpatient clinic in January 2017.
“The outpatient treatment worked well for me and helped me feel empowered,” recalled Davies. “It helped me psychologically, and I got to reclaim a little bit of my life each day at the apartment my wife and I rented near the hospital—we cooked, went for walks and always felt safe.”
For patients who are hospitalized for their transplant, a unique volunteer program called the ‘Living History Project,’ helps bring a welcome diversion to their day. Jo Sue Whisler, a UCLA Health volunteer and writer, explained that she interviews the patient about their life, then creates a laminated one-page story with illustrations and presents it to the patient.
“I am so privileged to have people open up to me. I don’t know who gets more out of it,” Whisler said. “Patients are so wise and have such great attitudes. The Living History Project is what I live for and my favorite thing to do in retirement.”
Many patients expressed gratitude to the staff for helping them get through the often-isolating experience. Nicole Archer, was 30 years old and the mother of two small children when she started treatment for Burkitt lymphoma in April 2016 at UCLA Medical Center, Santa Monica.
During treatment, Archer spent two to three weeks at a time in the hospital, missing her family that lived four hours away. She appreciated that the staff saw her as a person, not a patient.
“The disease does not have to be your life,” she told the audience. “You will get through it.”
Visit www.uclahealth.org/transplants/bmt for more information on the UCLA Health Bone Marrow and Stem Cell transplant program.
Enrique Rivero contributed to this article.