Jaclyn Rene Masieczek

When Adrienne had her most relapse last January, I was doing some research on the Internet about an experimental procedure called a “donor lymphocyte infusion.” I went to Yahoo and just typed “Hodgkin’s donor lymphocyte infusion” and a web site came up titled: “helpjaclyn.com.” This was a site about a young woman named Jaclyn Maciaszek who was diagnosed with Hodgkin’s Disease in 1995 when she was 17.

The web site wasn’t very up to date but I figured that Jaclyn had had about ten relapses in the 10 years since she was diagnosed and, thankfully, she was still alive. I was very excited. So, I sent her an e-mail asking how she was doing and specifically about her donor lymphocyte infusions. A few weeks went by with no reply and then one evening, out of the blue, I received a 3 page e-mail from Jaclyn. She’d been in the hospital getting chemo but she couldn’t wait to talk with us. She’s from a remote area of Florida with what she calls the “snowbirds” (older people who come from the northeast in the winter and go home in the summer) and she hadn’t really known anyone with Hodgkin’s Disease or someone with many relapses like her. After a number of e-mails, pictures back and forth, life stories, and so on, we finally talked on the phone. Not once, but several times a week, and sometimes every day. Jaclyn’s husband travels a lot for his job. She says he hates it but the medical insurance is great and she sure needs that. Adrienne and I were happy to have someone to share with, who actually knew what it is was like to have so many relapses and many of the therapies. We talked about treatments, side effects, clinical trials, things most people would be bored with, but not us.

It turns out that our paths had crossed several times though we had never met. In 2003, we were all at the Seattle Cancer Care Alliance while Adrienne had her second transplant and Jaclyn had her first donor lymphocyte infusion. Then last year, Jaclyn traveled to the Nike Women’s marathon with her husband, sister, and brother-in-law. And while she wasn’t able to train for the race, she and her family raised $25,000 for the Society, while Adrienne was a mentor and honoree right here for the walk team.

Jaclyn once said that she thinks God put her here for a reason…to see how much chemotherapy and treatment one human being could take. When we met, she had just had chemo and was waiting for her blood counts to come up so she could get her next round, but time went on and her counts never came up. We’d talk about clinical trials like Velcade, and monoclonal antibodies, and even donor lymphocyte infusions, and either the trials weren’t generating the results we wanted or the treatments were too dangerous. Her disease was still there but it seemed stable and sometimes that’s all you can hope for. She wasn’t about to let things get her down. She and her husband were looking to buy land and build a house. As a substitute teacher, she spent weekends in classes to keep up her certification. We talked about Adrienne’s senior prom and her husband Darin offered to fly out and escort her because he wanted her to have that night. (She got a date after all and had a great time.) One night Jaclyn called and said that her wig had caught on fire and the three of us laughed, though you could tell she was upset.

The last few months have been very hard for Jaclyn. Her blood counts have been so low that she’s needed platelet and red cell transfusions twice a week. Her spleen has been so enlarged from her disease that she couldn’t wear a pair of shorts or pants, despite losing about 25 pounds. Between low blood counts and disease in her lungs, she could barely catch a breath. Despite my almost daily calls for three weeks, we haven’t been able to talk. Last week, Darin called to say that Jaclyn had just died.

So why tell you this story? Because as you go through the daily routine of your life, I hope you will think of Jaclyn, 27 years old, spending the last 10 years of her life fighting a disease that many people say is curable, a disease that sapped her of her strength and her tremendous will to live. Jaclyn would have endured any treatment just for a chance at a normal life, just as Adrienne would.