I’ve been thinking about what I want to say in this forum for the past several days. Should I talk about my relationship with Dr. Ab Guha, who has been my friend, mentor, and advisor for almost two decades, and is now in hospital diagnosed with AML. About the numerous ways in which he has helped people, locally and around the world, both professionally and personally? Maybe I should discuss the terrible need that patients with leukemia and their families must feel when informed that their best chance of survival is with a stem cell transplant. Or, perhaps I should clarify how the donor matching system works, in order to increase awareness among readers and encourage further registration.
I’ll eventually write about all of these things on this site. But tonight, I want to tell you about ‘Amanda,’ a little girl I met in 1998, before I even started my medical training, at the Hospital for Sick Children (HSC).
I met Amanda when I volunteered to read to young patients in the hospital library. She was 9 years old when we met, and by then had been admitted for almost 2 months with a relapse of her leukemia. Her chemotherapy wasn’t doing what her doctors and family had hoped it would, and her best hope for recovery was to receive a bone marrow transplant. She had one younger sister and a half-brother, neither of whom turned out to be matches for her. Thus, her team had applied to the Canadian donor registry to conduct an international search for potential donors. Back then, there were 5.4 million donors registered worldwide, fewer than half the number registered today.
At the time, I had already been a blood donor for several years, but hadn’t really thought about becoming a bone marrow donor. Part of the reason for this was that bone marrow donation wasn’t at all prominent in the public consciousness in 1998. Canadian Blood Services (CBS) had just been created in the aftermath of the Krever inquiry into the hepatitis C/HIV tainted blood fiasco, and had not yet incorporated the Unrelated Bone Marrow Donor Registry (UBMDR). Prior to this, the UBMDR, as far as I can remember, didn’t really advertise itself much, and the only people who seemed to be aware of it were those in the medical profession, cancer patients and their families.
I first learned about the registry through my friendship with Amanda. I volunteered at the HSC library often back then, so I was able to see Amanda and her family frequently; she enjoyed listening to me read, and I enjoyed her company. So it was heart-wrenching to watch as, day after day, the registry was unable to turn up a match. Needless to say, I registered myself as soon as I could, but haven’t been lucky enough to be called to this very day.
Amanda’s condition worsened gradually, until she finally passed away three months after we first met. Two weeks before she died, she gave me a little yellow Teletubbie doll, Laa-Laa, a joke we shared on a play on my last name.
The infra-structure in place for donor registration has improved significantly since then, but there’s still a long way to go. Information is getting out to the public mostly through the concerted efforts of patients and their families and friends; OneMatch, the ultimate offspring of the UBMDR, is working on several avenues of community awareness, and will hopefully soon introduce a comprehensive campaign to help build up the registry here in Canada.
So here’s to the memory of Amanda, and all the other Amandas out there; here’s to the hope of finding matches for those still waiting, including Dr. Guha. Please help support this worthy cause, and register to become a stem cell donor: online (http://www.onematch.ca/), over the phone (1-888-2DONATE), or in person at “Swab-A-Thon”, our donor recruitment drive this Sunday, September 28, at The Tagore Centre, 140 Millwick Drive, from 11 am to 3 pm.