Meet Your Perfect Match
By Caitlin Emma
Seven-year-old Jacqueline Ziliak of Evansville, Ind., didn’t feel well that morning. “Jaz,” as her family calls her, had complained for weeks that her back, chest and knees ached. Her dad noticed bruises, big as half dollars, appearing and disappearing. That morning she really ached, but she said she didn’t want to stay home. It was class picture day. So she went to school and smiled brightly for the camera, a happy little girl with long, light brown hair. It was spring 2008.
The next day, doctors diagnosed her with leukemia.
At the same time, I was one thousand miles away studying journalism at the University of Connecticut and working at my college newspaper. My first assignment: report on a campus bone marrow drive. Volunteers I interviewed asked me if I’d like to join the registry.
“Sure,” I said, but I figured I would probably never get called. They swabbed my cheek with a Q-Tip to collect a cell sample. I filled out some paperwork and left, forgetting about the tiny cluster of cells headed for processing by the bone marrow donor registry, DKMS Americas.
My casual attitude was a luxury, though I didn’t know it at the time. For the Ziliaks, cells dominated every day of their lives. They watched in anxiety as Jaz’s white blood cell count rose and fell, marking the ups and downs of the war raging inside her body. They battled leukemia with chemotherapy, radiation and prayer. Their town tried to aid the fight, holding charity golf tournaments, cookouts, fundraisers and head-shaving parties.
By summer 2009, the leukemia cells retreated. The Ziliaks relaxed, taking a vacation to Disney World to celebrate Jaz’s remission. Then one day that fall, Jaz said she didn’t feel right. There were more tests, and then the dreaded news. She had relapsed. This time, only one life-saving weapon remained. Jaz needed a bone marrow transplant. For Jaz, like 70 percent of all such patients, the news got even worse. No one in her family was a good match. Doctors would need to find her match among the millions of strangers in the national registry. The chances were not great. Six out of 10 patients in need of a bone marrow transplant never find their match and 3,000 people die each year in the U.S. waiting for a transplant.
Finding a match meant much more than locating someone with Jaz’s blood type. Bone marrow matches are based on a complicated DNA-based tissue test called human leukocyte antigen or HLA typing. HLA’s are proteins, or markers, found in most cells. The immune system uses these markers to recognize which cells belong in the body. A close match between the HLA markers in a donor and patient reduces the risk that the patient’s immune system will reject the donor’s bone marrow. Many transplants occur when six or eight of the donor’s markers match the patient. I didn’t know it yet, but I was a perfect match for Jaz – 10 out of 10.
Over the 2009 Thanksgiving break, I was watching TV when the phone rang and my life changed. A woman from DKMS Americas said I might match a little girl fighting for her life. I was stunned. I’d forgotten that I had even registered as a donor. I said I’d call her back. I hung up and tried to absorb the reality of the commitment. Another person’s life, an eight-year-old girl, might depend on me. I called DKMS back. “Okay,” I said. “What do I have to do next?”
I had blood drawn for further testing, all the while imagining this little girl in the middle of a desperate fight. I didn’t know her name or where she lived, but I couldn’t stop thinking about her.
Shortly before Christmas, the Ziliaks got the phone call they had been praying for. There was a stranger, 1,000 miles away, who was a perfect match. DKMS set the donation date for February 10, 2010. It was on.
I worried that something unexpected would happen. What if the little girl didn’t make it until February? What if something suddenly happened to me and I couldn’t donate? Was I really her only option? All of a sudden, a child’s life rested on my ability to not mess up. Then there was the procedure. Many people think of bone marrow donation and picture an invasive operation. They see a giant needle penetrating bone, sucking up the marrow while the donor bears down in excruciating pain. That’s a misconception, but it’s a major obstacle for many people. Twenty percent of extractions do come from the pelvic bone, but the donor is anesthetized and the recovery period involves merely a week of soreness.
Most people are stunned to hear how I donated – no surgery involved. Doctors harvested what they needed directly from my bloodstream. The process, called peripheral blood stem cell donation, is used for 80 percent of all donations. Five days before the donation, I received daily injections of a synthetic protein that increased the amount of blood-forming cells in my bone marrow. My biggest side effects were headaches and bone aches, but I still felt like something wonderful was growing inside my bones.
Those blood-forming cells, essentially baby blood cells, pushed out into my blood stream as they built up in the marrow. Doctors harvested them on the fifth day of injections using a special device called an apheresis machine. For six and a half hours, my blood passed from one wrist through an IV, to the machine. The machine removed the blood-forming cells before returning my blood to my other wrist through another IV. The machine clicked and whirred and I watched as a thick, soupy liquid of swirling cells filled the bag overhead. I also wrote Jaz a letter, although I didn’t know her at the time, and wished her an early Happy Valentine’s Day. Jaz received my marrow on February 11.
DKMS helped me exchange a few anonymous letters with Jaz’s family for the first year after transplant, but donor registries require one full year of confidentiality to prevent unwanted contact. Sharing those few details, the details of Jaz’s life, was so dear to me. As normal life resumed, I held those details close to my heart and settled for the fact that somewhere out there, my marrow helped a little girl make new, healthy blood cells. I knew at least that.
On a warm night in April 2011, 14 months after the donation, I received a phone call from a number I didn’t recognize. My jaw dropped when I heard the anxious voice on the other end. She introduced herself as Lainie Ziliak, Jaz’s mother. We spent an emotional hour on the phone. They offered to fly me to Indiana to meet them at the end of May. I now had a name, family and a way to clear up the foggy experience I had lived with for so long.
Moments after the wheels of a tiny regional jet hit the ground, Jaz ran toward me at the gate. I bent down to hug her. Her mother and father were in tears. I was too. Later, in the Ziliaks’ dining room, I could hardly believe that Jaz was sitting next to me. She shook me to attention as she tried to teach me a card game, but her parents wanted to share her story. Jaz grew restless and impatient while everyone kept forgetting whose turn it was at cards. That week, her parents often wiped away tears while telling stories about Jaz’s extended stays in the hospital. I heard about the times when she was too sick to get out of bed, but I’d also hear about the moments when she made her own fun, even while receiving enough chemotherapy to sicken an adult.
Her parents showed me a home video of Jaz, all decked out in her hospital gown on the “catwalk,” performing Right Said Fred’s classic, “I’m Too Sexy” for a room full of doctors and nurses. Jaz smiled in bashful pride.
We celebrated her tenth birthday during my stay and I’m looking forward to celebrating more in the years to come. I’ll also be sending her packages for what her family calls Jaz’s second birthday – February 11. That’s donation day for Jaz, when she got a second chance at life. And me? That’s the day I gained a little sister and more fulfillment than I could possibly explain.