Remembering Carley: Turning Grief Into Advocacy
LLS talks to Michael Copley, national chairman of the Harry T. Mangurian, Jr. Foundation -- Beat AML campaign, a three-year $8.3 million initiative expected to change the landscape of acute myeloid leukemia. The groundbreaking collaboration between The Leukemia & Lymphoma Society and Dr. Brian Druker’s team at Oregon Health and Science University is testing the response of patients' leukemia cells to different targeted therapies and novel combinations. The goal is to eventually match patients with treatments that precisely target their leukemia.
The last family photo with daughter Carley, taken shortly before she died in 1996
How was your family affected by acute myeloid leukemia (AML)?
Our daughter Carley was diagnosed with AML in 1995 at the age of 2 and a half. We were on vacation in Maui and she was acting tired and moody, and she had lots of bruises on her legs. After going to numerous doctors, we still couldn’t figure out what was going on, but finally one pediatrician decided to do a blood test. When the results came back, I’ll never forget his words, “You better go somewhere you like because you’ll be there a long time.”
We rushed back to San Diego and Carley was admitted to Rady Children’s Hospital. It took almost two weeks to determine what she had. It was leukemia and it was AML, M-7, a rare and aggressive leukemia that had at best a 10% survival rate. At the time, we hardly knew what leukemia was, much less anything about survival rates. Her protocol was heavy chemotherapy to try to get her into remission and then a bone marrow transplant. The chemo was hard on Carley and we basically lived at Children’s on and off for the next year.
How did you first get involved with fundraising for LLS?
About six months into Carley’s illness, I heard about Team In Training and thought that training for a marathon would be welcome therapy. Liz and I formed “Carley’s Angels” and we were able to raise $100,000 for LLS. It turned out I had foot surgery so I couldn’t run the marathon in Anchorage, but Chris, my 12-year-old son, ran it for me. I think he was the youngest person to ever run a TNT marathon. All during this time we had been searching for a bone marrow match, and Carley was just getting into remission. Right after Chris finished the marathon, I got a call from Liz; she told me Carley had relapsed. I was absolutely devastated. I somehow got to the after party, tears in my eyes, and the TNT head coach, Tommy Owens, invited me up on stage and gave me a hug. I’ll never forget that hug, ever; and, so started my journey with LLS.
The following year, we went back up to Anchorage to run the marathon, since so many friends had donated. I ran and Liz walked. She was six months pregnant. Carley died August 16, 1996, and Gillian was born September 8, just three weeks later. Turns out she was a perfect match. The chemo was pretty horrific and was really beating up Carley, and we all believed there was not much chance of remission. So, we made the heartbreaking decision to stop treatment and just bring Carley home. We had three special last months with her.
Have you seen many changes since Carley died?
For the past 30 years not much has changed treatment wise for AML. It’s such a heterogeneous blood cancer. But, with the advances in genomic sequencing, computational analysis and more and more potential compounds available, we have hope that this will change. Dr. Druker’s Beat AML collaboration is critical to improving treatments. As well, there are advances for AML in immunotherapy. Before AML was a dark tunnel. Today we are just beginning to see light at the end of the tunnel.
It’s been 19 years since Carley died. How did you keep that passion going and turn to advocacy?
Losing Carley was devastating, but there is not much choice but to go on. Somehow we all find our little (or big) causes….. or they find us. If you believe you can make a difference, then you do. After Carley died, I worked as a parent liaison at Rady Children’s Hospital, helping families newly diagnosed with cancer. I joined our local chapter LLS board and eventually sat on the national Board of Directors. I met individuals with tremendous passion and dedication, and I knew LLS was where I could be part of an incredible team. Our goal is to improve the quality of life of families and to never give up searching for better treatments and cures. I have had a lot of people help me, so I’ll always be there to help others.
Why did you want to chair LLS’s Beat AML effort?
When LLS agreed to fund Dr. Druker’s Beat AML collaboration, I just thought what a wonderful opportunity for AML families. For those of us who have been touched by AML, we share a common bond. As chair, I could reach out to AML families everywhere and tell them that finally LLS is doing something about AML; that finally there may be some hope. I wanted to let them know that they too can fight back. Also, importantly, it takes volunteer leadership teaming with LLS leadership to help engage our patients and families in our fight against AML. All of us together will undoubtedly make a tremendous difference. Down the road, we can turn around, look back and say, we all did that together!
How encouraged are you about the future?
We’re more than two years into the Beat AML campaign, and Dr. Druker is making definite progress towards discovering what drives AML and what treatments can effectively treat AML. But, AML is still an incredibly complex and challenging blood cancer. We’re on the edge of exciting progress in AML. Besides Dr. Druker’s OHSU collaboration, there’s promise for AML in immunotherapy. As well, LLS is funding close to 100 additional promising researchers who are addressing AML. So, yes I am encouraged, and for the first time I truly believe there is hope for AML families.
The Beat AML collaboration with Oregon Health & Science University is using cutting-edge research methods to find new treatments.
Read Latest AML Updates for more news about AML.
