If you want to have a conversation with 17-year-old Carolyn “Ceci” Christenson, choose the phone or her back patio. After treatment for a blood cell disorder, she must limit close contact with others as her immune system gains strength.
As she heals, she’s working to raise awareness about a simple test that could save countless lives among others searching for a life-saving stem cell match.
Vicki: You were just a freshman at Gilbert High School when you began to notice your symptoms.
Ceci: I was really pale. Regular tasks became daunting. I was tired and I got softball-sized bruises. I had a lab draw and discovered that I had half the amount of blood circulating in my body that I needed.
Vicki: It was tough for the doctors, at first, to diagnose your condition.
Ceci: It was quite a struggle. Myelodysplastic syndrome (MDS) is diagnosed by elimination, so you kind of have to “X” everything else off.
Vicki: What exactly were you told that MDS actually is? Does it typically strike young adults?
Ceci: It’s a failure of the bone marrow. It’s actually a disease of 50-year-old men with [exposure to] Agent Orange. So maybe I’m an old soul.
Vicki: Talk a little bit about how it is treated.
Ceci: The only cure is a stem cell transplant or a bone marrow transplant. In my case, stem cell was necessary. I had to find a donor; that’s the only way you can have a transplant. I was very thankful at that point that I had two brothers. Alan is 19 and Ryan is 22.
Vicki: How did they react when they found out that they might be able to help?
Ceci: They had a little competition over who would be the match. They both desperately wanted to be it.
Vicki: You were lucky because family members don’t always match.
Ceci: I’ve actually heard stories of people with 10 siblings and none matched. Thirty percent of patients find donors in their family, which means 70 percent actually have to rely on someone outside of their family.
Vicki: Your brother, Ryan, ended up being your donor. What was his reaction upon hearing the news that he could help, and then after the procedure?
Ceci: He was thrilled. He had the opportunity to help save my life and he jumped at it. He was sitting in my room the night that I got the infusion of his cells, holding my hand, and the first thing he told me was that he loved me and the second thing he said was, “I want to go do it for someone else.”
Vicki: How has your diagnosis and treatment affected your outlook on life? Coping with a serious illness is tough at any age, but especially during the teen years.
Ceci: It’s quite a change from worrying about the prom or my school dance, but I’m blessed to have the opportunity to speak out for the need for donors, because I am here.
Vicki: As your immune system rebuilds, you are limited in contact with others. That’s got to be tough.
Ceci: I’m very isolated. I haven’t been to school since my freshman year—it’s been two years. I can’t go into grocery stores or the mall. I had to wait to get my driver’s license. So many things. I don’t play sports anymore.
Vicki: You’ve created a website, and you’re hoping to work to enroll more donors for the registry to increase the odds that others who need stem cell or bone marrow transplants will find matches. Did you ever imagine that you’d have the energy to do that?
Ceci: I am very fatigued, but passion fuels you. I’ve decided that because I’m no longer looking for a match for myself, I’m looking for someone else. Someone else’s daughter, brother, granddaughter.
Vicki: How are potential donors tested to be included in the National Marrow Registry? Does it hurt?
Ceci: You have to be between the ages of 18 and 60. You fill out some general health information and then they do a cotton swab on the inside of your cheek. It doesn’t hurt.
Vicki: What would you say to encourage more people to be tested?
Ceci: I could give some statistics. I could tell you that only 17 percent of African Americans are finding their donors, so minorities especially need help. In my battle against MDS, I don’t have control over much. But this is something we have control over as a community. And I think it’s time to take control.
Staff multimedia journalist Vicki Louk Balint is the mother of four children.