A Perfect Match by Sharon O’Donnell
Next Saturday, one of my nephews, Jacob, is getting married. Of course, I’m happy for him and his fiance and looking forward to it; yet, this wedding has another emotional element to it. When Jacob was nine, he was given six months to live unless he found a bone marrow donor. In April of 1993, he was diagnosed with a rare type of leukemia that doctors knew would not stay in remission very long — if indeed he ever got into remission at all. I still remember the phone call from my mother who had heard from my sister at the hospital. My husband, Kevin, answered the phone and handed it to me, biting his lower lip, knowing it wasn’t good news. “They say it’s definitely leukemia,” she’d told me, her voice cracking. We had been hoping his fever and inability to get rid of strep throat had been more to do with some other possibilities, but his pediatrician did a white cell count and sent him immediately to the North Carolina Children’s Hospital about 30 minutes away. The doctors there were testing Jacob for several things, one of which was diabetes, and that was what we were hoping for because the alternative was something we couldn’t fathom. But my mother’s phone call left no doubt. It was cancer. My little nephew had leukemia. I hated the sound of the very word; it sent chills down my spine. “Oh, Mama, no,” I’d said, my heart breaking. I’ll never forget seeing my husband lean back against the wall and slowly slide down it into a stooping position, as if he could not bear the weight of the news. I’d run outside into my yard where it was dark and raining, but the I had to get outside because I felt like I was suffocating. I realized that night what the word ‘devastation’ truly meant, and I promised myself I would never again use it to mean anything less. I’d never again say things like “I’m devastated my team lost” or “I’m devastated I didn’t get that job”. The word was more powerful than that. Much more powerful.
We knew from the outset that Jacob would need a transplant because he had something called the Philadelphia Chromosome, which basically meant the leukemia would not stay in remission. His white cell count was 312,000, which was extremely high; normal counts are around 10,000. While doctors worked to get Jacob into remission through chemo and radiation, a group of family and friends formed a group called Jacob’s Ladder, and our mission was to promote the bone marrow donor registry and to try to add people as donors. We knew the chances of finding a match for Jacob were not good, but we thought perhaps we could find donors for others — and yes there was a one in a million chance we’d find one for Jacob. Back then, a blood test was required to go on the registry, and the cost of the test was $60. We had to educated the public about what it meant to be a donor, arrange the bone marrow drives and promote them, and also raise the money to fund the drives. Luckily, we found some wonderful sponsors. After a month or so, Jacob went into remission, which was good news in one way, but since we didn’t know how long he would stay in remission and a donor still had not been found, it was scary to contemplate how long he would stay in remission.
With all the possible DNA combinations, there are over 10,000 types of bone marrow, and some are more rare than others. Jacob’s was rare. In order for a transplant have the possibility of being successful, the match has to be good. There were six DNA components of the tissue, and so a 6 out of 6 match was the best there was, even though 5 out of 6 matches had worked before too. Jacob has two brothers, but there is only a one in four chance that siblings have the same type of marrow. Unfortunately, Jacob’s two brothers matched each other but not him.
Several months went by, and there was one scare that Jacob was out of remission, but it was a false alarm. During this time, Jacob stayed on his meds, while we worked adding people to the registry. I liked to think there were other groups all over the world doing the same and that somewhere Jacob’s perfect match would decide to join the registry. Jacob amazed all of us by his upbeat attitude. One time his mom — my sister — said that on the way to the hospital for his chemo and bone marrow tap, he started singing, “Zip-a-dee-doo-dah, Zip-a-dee-ay”. My sister said she drove along the highway having a hard time keeping her emotions in check as she listened to his sweet voice singing, “My, oh my what a wonderful day! Plenty of sunshine heading my way.”
In October, we finally hear those magic words, “We’ve got a match.” The person who matched Jacob was from the Netherlands. And he was a perfect 6 out of 6 match. Jacob was scheduled to go into Duke Medical Center in mid-November where his own bone marrow would be destroyed by high amounts of radiation and then replaced by the donor’s marrow. We knew it was going to be tough on him, but we also knew it was his only hope. Jacob had the transplant the night before Thanksgiving, which was so appropriate as we gave thanks for so much, especially for his donor.
The transplant was successful initially, but Jacob still had a long road ahead of him because sometimes the body fights off the donated marrow, resulting in complications that can be terminal. Despite some setbacks, Jacob came through that first year. And then the second year. And then the third.
It’s now been over 19 years since Jacob’s transplant. He is our miracle. Nothing short of it. He is doing well and goes back for annual check-ups at Duke. We never got to meet Jacob’s donor because the Netherlands has rules against that. We tried to go around that rule, even contacting the Netherlands Ambassador in DC. So we don’t know anything about the donor other than he was a 33 year old male — and that he was part of a miracle. We sent some thank you gifts through the Red Cross to him, but I don’t know if he ever received them or not. We hope and pray he knows what an incredible difference he made in Jacob’s life and in the lives of so many others.
Now that donor has made a difference in the life of Jacob’s fiance, Carie. And wherever he is, we thank him again and hope he knows how we feel.
I can’t wait until next Saturday.