I am a standardized patient — someone who portrays patients or sometimes, a parent, to work with doctors and give them practice communicating sensitive and complex diagnosis.
One morning a few weeks ago, I sat in the conference room waiting for the young doctor to talk to me about my “son.” With his bright blue eyes open wide, he said: “I’m sorry — his chemo isn’t working. We’re going to have to switch gears here.”
My character braced for the worst. As it was delivered I could barely make out the words.
I focused on his shoes, the dark blue weave of nylon, the patterns. Anything to block out the words he was saying, even for just a moment.
In my case, I was just role playing — but the scenario is real.
“What can we do?” I asked. Calmly, carefully, he discussed switching chemo medicines and then mentioned a bone marrow transplant.
My character took a moment to absorb the news of a son’s relapse with leukemia. I asked about the bone marrow transplant.
“Michael” had been diagnosed about a month ago but he had been responding quite well to treatment. He was looking healthy again and eager to get back to school and to start soccer, I explained.
The doctor slowly explained that while the leukemia treatments carry a risk, a bone marrow transplant contains its own set of risks. But in my case, it was one of the few options left.
As my character wept and hoped that the data base contained a bone marrow donor match, I began thinking about donors. Who were these bone marrow donors and how did they get into the registry? Although I have given blood and am proud to have “organ donor” stamped on my driver’s license, I just wasn’t familiar with the bone marrow donor pool or its requirements.
After the session, I went home to look online for more information about the transplant procedure. My search led me to the Be the Match Registry.
Be the Match is the largest bone marrow registry in the world with more than 10 million members. I went through page after page of information, learning about the requirements and expectations of the program.
You must be age 18 to 60, have no history of hepatitis, heart disease, cancer or AIDS. When you join the registry on line as I did, you will receive a registration kit in the mail to collect a swab of cheek cells from your mouth.
They will tissue type the sample that you send them and use the results to match you to patients. If and when a match is found, more tests will be required.
It was clear that even if I applied to be a donor and went through the process of being in the registry, if a match were found I could still change my mind and reconsider going through the process.
The bone marrow transplant procedure sounded a bit painful and time consuming, but I kept feeling the stab I felt when the doctor told my character that a transplant might be our only hope for her son. All I needed to do was picture my own son in that situation and imagine what I would give to find a donor match.
I mentioned the topic at a meeting the next night and was impressed to learn that my friend Debi had been a stem cell donor, which is a similar process. Her experience had been difficult, possibly more than the guidelines had expressed in the materials I’d read.
She experienced flu-like symptoms for days and had to have someone help care for her during the process. She wanted to make sure I had my eyes open to the serious realities of the procedure.
I appreciated hearing from someone who had gone through something similar but I wasn’t deterred. I was still haunted by the desperate hope that there would be a bone marrow donor for “Michael.”
The odds of being a compatible match to an unrelated marrow donor are from one in 20,000 to one in 100,000. Only one in every 540 members of Be the Match Registry in the United States will go on to donate bone marrow or peripheral blood stem cells to a patient.
The doctor that day did a wonderful job explaining blood cancer and the treatment options. He also unknowingly inspired me to join the Be the Match registry. The registry’s success depends on a large number of volunteer donors. The more people who register, the better the odds that a match will be found.