Ben, his wife Missy and their 3 children: Gavin (8), Elizabeth (6) and Cate (3), live on a 10 acre farm in rural eastern Oregon. They have temporarily moved to Seattle for Ben’s clinical trial where he is receiving treatment for Acute Myeloid Leukemia (AML).
In 2007 Ben was diagnosed and treated for Osteosarcoma with several surgeries (that resulted in a partial femur replacement and an artificial hip) and 18 months of chemotherapy that successfully destroyed the tumor. Since October 2010 doctors have been monitoring nodules in his lung. Whether they are metastases (of the osteosarcoma) is TBD because in May 2011 Ben was diagnosed with Acute Myeloid Leukemia (AML), a possible side effect of the intense treatment he received for the osteosarcoma. The lung nodules are slow-growing so no active intervention is planned until after he finishes the AML regimen.
Ben has been participating in a clinical trial in Seattle, WA since June this year. By late July his levels of leukemia were undetectable and he is in remission, which paved the way for a bone marrow transplant on September 8th. His sister Lisa is the bone marrow donor. Since the transplant Ben has remained positive despite isolation, fevers, infections and headaches. The best news he has received of late is that the transplant is successfully growing bone marrow, producing new blood cells, and he is developing a new immune system!
Ben’s words sum up his determination, "As I said when I first started the leukemia treatment, this is a triathlon. The cycling portion of my triathlon began with the bone marrow transplant. Cycling is the longest portion of the triathlon, both in distance and time and there is always a time of adjustment before you get into your cadence and become smooth on the bike. Over the past several weeks, I have had some difficulties getting into my rhythm. I will put my head down and keep pedaling until I get into my groove."
Missy (Ben’s wife) adds, "Before Cancer, Ben was an athlete. He loves all sports, is passionate about soccer and loves to run. We were training for a marathon when he first felt the symptoms of the bone cancer. (We began training and his hip began to hurt while we were running. The soreness turned into pain, which eventually led to his diagnosis). Running in a race is a dream of Ben’s that we hope we can one day fulfill. The treatment for osteosarcoma changed Ben’s lifestyle. He enjoys spending more time with our family. Since he was four, Ben’s favorite activity has been reading, something he shares with our children. Instead of playing sports, he coaches our children in soccer and baseball and gets his exercise taking care of our 10 acre farm. He enjoys being outdoors and caring for his cows. Ben loves to garden now, especially with Elizabeth and Cate. They sit in the garden for hours taking care of the soil and talking. We have veggies growing from late spring through fall and we have lots of fruit! Gardening has become a sort of therapy for Ben and he is wonderful at it."
Missy continues, "No one knows how much time we have on this earth. When you have a cancer diagnosis, you start to look at mortality issues more closely. Lazarex has given us one of the most precious gifts, the ability to stay together as a family. For the first three months of Ben’s leukemia treatment, the children had been staying at both sets of Grandparents while I stayed with Ben at the hospital. This situation worked well, but was not great for our family. The children missed us terribly and didn’t understand why they could not be with us. Every night when we would talk to the kids on the phone, they would ask when they could see us again. Every time, their cries would break our hearts. I felt as if I was having a revelation the day I got the call from Lazarex stating we were approved for assistance for our lodging and travel expenses. That day, we were leaving for Seattle and saying good-bye to our children for the next two months. However, with the call came hope. Now we had the financial resources to keep our family together during Ben’s treatment. Within 30 minutes of receiving a call from Lazarex, we were finally happy with our plan. The children are able to come and visit Ben in the hospital every day and they are able to attend a school that is exclusively for children who are going through cancer (whether it is a family member or themselves). This has given stability to the children and although they are scared and do not understand why their Dad has to have cancer, at least they can cuddle with him and tell Ben “I love you Daddy” every night. Every time Ben looks into their eyes, he is reminded of what he is fighting for. Lazarex gave us the gift of keeping our family together."
