Persistance, Love and Dedication with Moira Minielly
In October, 2000 our lives changed. I was diagnosed with a rare and aggressive form of non-Hodgkin lymphoma. It is so rare that initially I was misdiagnosed. My father-in-law, a pathologist in Tulsa, Oklahoma helped identify the correct diagnosis of anaplastic large-cell lymphoma.
All this happened when we were not even living in the United States. In August 2000, my husband, Chris, and I had just moved to Hong Kong from mainland China where we had been living and working for close to four years. During our move, I noticed a lump in my bikini line and started a course of antibiotics. The lump grew larger and I had a surgical biopsy of the lymph node. The doctors initially determined it was a benign, reactive node. Within a week, however, I began to experience low grade fevers, severe backaches and intense night sweats.
Unable to identify a correct diagnosis, I sent the biopsy slides to my father-in-law in Tulsa. Through further staining of the slides, the doctors determined I had anaplastic large-cell lymphoma. Within a month of my biopsy, I advanced from stage I to stage IV. We had not even settled into our new life or Chris’ new job in Hong Kong when we were on the plane to the U.S. to begin treatment. It was a bizarre turn of events to walk into a cancer ward as a patient and not as a volunteer.
While the diagnosis was a relief, it was also a huge shock; Chris and I thought we had already experienced our major road bumps in life. Nine months earlier, we lost our first child when I delivered at five months gestation. Then I was pregnant again when I was diagnosed, but the cancer was so aggressive we could not keep our second child either.
For six months I received the protocol chemotherapy treatment for non-Hodgkin lymphoma (CHOP, which consists of cyclophosphamide, adriamycin, vincristine, and prednisone). April 2001, I went into remission. In celebration, I ran the Mother’s Day Y-ME Race Against Breast Cancer in Chicago. For six glorious weeks I was, I thought, cancer-free, then the cancer came back with a vengeance. My only hope was a bone marrow transplant.
For weeks I lay feverish, in pain and struggling to breathe as the cancer invaded my chest, my bones and the rest of my body. Chris would lay awake at night listening to hear if I was still breathing as we awaited news of a bone marrow match. I have six siblings yet not one of them matched my HLA (human leukocyte antigen) type needed for a transplant.
My family is incredible. When I was diagnosed, my youngest sister Mary, a cardiovascular intensive care nurse, said to my parents, “Now I know why I became a nurse.” She quit her job to take care of me while my husband worked. My brother Bill said, “If any of us is going to be able to beat this, it’s going to be Moira.” Another one of my brothers, Tom, was able to donate platelets, and my sister-in-law made him a tee shirt that read, “Moira’s platelet factory.” I was hooked up to an IV, receiving my brother Bernard’s blood and then my brother Tom’s platelets when we found out I had a match.
The preparation for the transplant was grueling not only for me but also for my family. I endured continuous high-dose chemotherapy and multiple sessions of full body radiation. My family, in turn, fielded 5 a.m. phone calls of plans to escape the hospital. But I could not leave my isolation room, not even to walk the halls as I had no immune system to protect me.
My donor, Katherine, chose the earliest date to donate since she knew how important it was to help me. She donated marrow for her mother a few years earlier. Fortunately for me, she picked August 28 to donate, as one of her available dates was September 11, 2001. After she donated her bone marrow to me, she joined the National Marrow Donor Program as a Marrow Donor Recruiter.
August 28, 2002, a year to the day after my transplant, the Hendrick’s Marrow Program invited us to a benefit where Katherine was speaking and surprised her with our introduction! It was an amazing meeting and we are now incredible friends. October 2003, three years after my diagnosis and two years post-transplant, Chris, Katherine, and I ran the Chicago Marathon together. To this day we continue to celebrate milestones together; my daughter Katherine (named after my donor), whom we adopted from China, was in my donor’s wedding just three years ago.
When I was diagnosed, my husband was told I had a 10 percent chance of survival. Fortunately, I was not aware of that statistic. I would advise every patient who is newly diagnosed to be careful when doing research because you are not a statistic. I sure wasn’t. Everybody is different, and keeping a positive attitude can make a difference. There’s always hope.
To help make a difference in my recovery, I decided to learn everything I could about the cancer and treatment. I did research about lymphoma on the Internet and found helpful material on the Lymphoma Research Foundation (LRF) website. Once I was well, I wanted to give back. I became involved with the “Buddies Program” through the Lymphoma Support Network at LRF. Patients and caregivers who wish to talk with me as a survivor of NHL may contact me via the LSN. Using my experience, I offer support and encouragement to those in need.
Updated: January 30, 2013