Donors, Thank You for Saving My Daughter, Part 1

February 11, 2010 at 10:46 am

A Western Washington mother sends her gratitude to the many blood donors of Puget Sound Blood Center who helped her daughter survive until a matching cord blood donor could be found.

Our eldest daughter was diagnosed with T-cell Acute Lymphocytic Leukemia (ALL) in June of 1997. She was 16 ½ and had just finished 10th grade. She / we spent the better part of the summer at a hospital where they did their best to kill all of her blood cells. Her blood type was A positive. In order to keep her alive, she needed many transfusions of Packed Red Blood Cells (PRBCs). (Thank you to the many donors, who well exceeded our family’s donations.) She was in remission after just a couple of weeks and stayed that way throughout the 2 ½ year chemo protocol. She graduated from high school and was looking forward to starting to college in the fall, but when they did the final bone marrow draw to confirm her remission, we discovered that she was relapsing. This would require a bone marrow transplant.

The search for an unrelated donor was started immediately, but there wasn’t anyone in the international donor bank that matched her slightly unusual set of HLAs. No better match than 7/10 HLAs was found. Neither of us parents were an adequate match (parents can generally only match 50% – a terrible match) and our other daughter was an even worse match (she seemed to have gotten the opposite mix of our genetic dice), though siblings have a 1:4 chance of matching. She also had to start a new nasty chemo protocol that got her back into “remission”, but had to be repeated every two months, each time with a 20% chance it wouldn’t work again. This, of course, required many more units of PRBCs. (Thank you all again, donors). During this time, we worked with Puget Sound Blood Center and arranged to have an HLA typing drive in conjunction with a regular blood drive in our small town. The turnout here exceeded many that were held in big cities. (Thank you to our townsfolk). Though no one here was any better of a match, I have heard that at least one person typed that day went on to donate to someone else’s precious child. (Thank you, bone marrow donor.)

In talking with the National Marrow Donor program, my husband found out about cord blood transplants. We learned that a cord blood transplant might be our daughter’s best chance for survival.

Next week, we will tell how her daughter found a match, and explain how expectant parents can become involved in cord blood donation. You can Visit this page to hold a blood drive at your nearby donor center .

Jessica: A Survivor Twice, Thanks to Blood & Bone Marrow Donation

September 23, 2009 at 8:53 am

Thanks to Jessica for her generosity in sharing her story through this guest blog post. Jessica survived Acute Myeloid Leukemia and Aplastic Anemia thanks to a bone marrow transplant, a peripheral blood stem cell transplant, and donations of blood and platelets. It took the generosity of many, many donors to save her life.

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.

My brother came to my rescue yet again. In October of 2002 I received my second bone marrow transplant, this time at the City of Hope in Duarte, California. This time, Daniel donated blood stems cells by PBSC donation (peripheral blood stem cell), instead of from his bone. Donors can use this method about 70 percent of the time.

My second bone marrow transplant was much harder on me–I was in the hospital for several months as opposed to three weeks, and my immune system was so compromised that my mom, who stayed with me every night, had to sleep in a mask and gown.

I was discharged from the hospital when I was no longer dependent on my IV for my medications and fluids. I have been disease-free now for eight years.

I had difficulties after each transplant, including Graft vs. Host Disease, the horrible side effects of the medications used to treat it, and the tentative acceptance of my peers after I had been changed so drastically.

It is a frightening thought, to realize that had my brother not been a match for me, had a donor not been found soon, I would have died from Aplastic Anemia within a few months.

I am so fortunate that my brother was a good candidate to donate his bone marrow to me. Some people aren’t as lucky as I have been–70 percent of people requiring a life-saving bone marrow transplant will not find one from a relative, but from someone unrelated. The demand for blood donations and bone marrow donors is frighteningly high. After my experience, every person in my family as well as several close friends who were eligible have signed up with the National Marrow Donor Registry. Registering is really simple: you must be between the ages of 18 and 60, you just have to fill out a health questionnaire and do a simple cheek swab, and you can sign up at any mobile blood drive or donor center.

As strange as it may sound, it was my experience during my first transplant that ignited my love of Seattle and prompted my move here in February of 2008. I love how eco-minded the people in Seattle are, how conscientious everyone is, and how much effort is put into preserving the city and its population. And I am so grateful to the doctors, nurses, volunteers, and donors who commit themselves to saving the lives of patients like myself.

I can’t donate my blood. I can’t donate my bone marrow. All I can do is share my story, and thank the brave men and women who help to save those patients who do not have a big brother who loves them.

Thank you, and Baruch Hashem.”

Thank you too, Jessica. Thank you for your bravery and for your dedication to educating others.

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