Patients are most likely to find a compatible donor within their own ethnic group. A diverse Registry of potential donors is needed.
Jessica survived Acute Myeloid Leukemia and Aplastic Anemia thanks to the selflessness of many, many donors. Jessica’s story was originally posted on Sep. 23, 2009. It’s time to share it once again with the Blood Center’s many new Facebook and Twitter followers. Thanks again to Jessica for her generosity in sharing her story through this guest blog post.
Cancer treatment isn’t easy. It isn’t fun, or simple, or a walk in the park. My acceptance of the situation, my adaptability (my naiveté), my faith that when my parents told me “everything would be OK” it would be—that’s what got me through the years of treatment. Bravery had nothing to do with it.
My brother, Daniel, was my bone marrow donor. I’ve heard stories of family members who were too scared, too preoccupied with their own lives and their own fears to donate their bone marrow to a dying relative. I don’t believe the thought ever occurred to my brother. When Daniel woke up from anesthesia the day he donated his marrow to me, the first thing he said was, ‘They tell you not to feel responsible, but how can I not?’ and my big, strong, bully of a brother cried.
He had been referring to the possibility of my death. To me, that is bravery.
I was diagnosed with AML- Acute Myeloid Leukemia- in 1998 at age 11. I was an active kid; I was the catcher on a softball team, played handball with my friends at recess, and never fretted over cuts or bruises or splinters. On Memorial Day weekend in 1998 I noticed a small bump, about the size of a pea, in my right cheek. I couldn’t see it, but If I pressed my tongue against the inside of my cheek and a finger on the outside, I could feel it. My mom had never been the kind to “wait and see,” so I had an appointment with the pediatrician the following day.
I was misdiagnosed that day with a blocked salivary duct, given an antibiotic and told to suck on sour candies. My friends were jealous when, the next day at school, I had a Warhead consistently in my mouth.
I was told that when my mom received the call, she collapsed onto her knees, unable to speak.
I had spent the night at a friend’s house that weekend, and the next morning I was swept away without an explanation, told only that I had to see the doctor again.
I received my chemotherapy treatment at UCLA Medical Center in Los Angeles, California. To be honest, a good deal of that time is a blur to me. I remember beating Super Mario Brothers at least five times, staying up nights, trembling uncontrollably, with my mom while I was on Amphotericin (which doctors nickname “Awful Terrible”), and fine-tuning my love for classic Hollywood films and Mel Brooks. When I wasn’t in the hospital I was traveling there three days a week for blood transfusions. Every time, I would receive at least several bags of red blood and platelets each. The process usually took all day, and if I still had not been given a significant enough boost I would be admitted overnight.
On one such occasion, my platelet level had dropped to a dangerously low level. My skin was unable to keep itself knit together—my gums split open of their own accord, and I could do nothing but lay in a hospital bed with the taste of copper running down my throat, hoping the next transfusion would be enough to heal the wounds my body had given itself.
Hospitals often keep track of what donors have an especially good effect on a patient, and a man who had recently moved to Northern California who had boosted my levels before was called. He flew down to Los Angeles to donate his blood to me again. I’ve never had the chance to thank him.
I’m not sure what led my parents to decide on the Fred Hutch Cancer Research Center for my bone marrow transplant, but their decision put me on a path that I had never previously considered.
My mom, grandma, godmother, brother and I moved into three apartments in Capitol Hill in August. I received the last stage of my treatment, and enjoyed the city of Seattle while I was still able and allowed. My favorite thing to do was go to the arcade on the wharf. There was, and still is, a photo booth that takes your picture within the frame of your choosing. I still have a picture of myself, bald and fifty pounds overweight from steroids, within the frame of a newspaper with the title, “Aliens Have Landed!”
I had my bone marrow transplant in September of 1998. The day I was admitted I was instructed to walk two miles everyday, which was approximately nineteen laps around the transplant ward. The first day I lapped every other patient at least three times. A week later, it was all I could do to put one foot in front of the other. In one of the rooms, when the door was open, you could see Mount Rainier through the window. It became my goal each day, to finish each lap in order to catch a glimpse of the beautiful mountain.
I was in the hospital for approximately three weeks. The day I was discharged I walked home to our apartment in Capitol Hill and then made dinner for my mom and I.
We moved back home to California in January of 1999, and I resumed the semi-normal life a cancer survivor is destined to have.
In 2001, during my freshman year of high school, I began to have dizzy spells. They were severe enough to put me flat on my back for fear of passing out, waiting for the blood to return to my white face and lips. I was diagnosed with Aplastic Anemia, a disease that is often caused by the treatments used for Leukemia.
My doctors first tried to control the disease with medication, and when that didn’t work, plasmapheresis—a process in which blood is removed from the patient, the plasma is separated from the rest of the blood and then discarded, and the remaining blood is then returned to the patient. When plasmapheresis did not seem to help any, my doctors turned to my last resort—a second bone marrow transplant.
The conclusion to Jessica’s story will be in the next post. You too can learn about joining the Bone Marrow Registry.