Here's our Journey:
Ben has always been a remarkable boy; he is very inquisitive and kind. Within the first years of his life, I noticed some slight differences from other kids. Among other things, Ben walked on his toes. I attributed that to my own childhood toe walking. My mother also said that my father was up on his toes even when she met him at the age of 18. So, I didn't think much of it. I had Ben evaluated by a pediatric orthopedist and everything seemed fine.
When Ben was 10-years-old, I realized that the toe walking was more problematic. At that point, he could no longer bring his feet down. He had a condition called "contracture" in both his calves. His muscles actually shortened and were very very tight. So, my father and I located one of the best pediatric orthopedic surgeons in our area, had Ben evaluated, and agreed to surgery. The surgical procedure was going to be intense. Ben would undergo a partial release of both his Achilles Tendons. He'd be casted on both legs for 6 weeks and then endure a great deal of physical therapy. My other 2 children, Ben and I, all mentally prepared for this challenge. We created schedules for my other kids to stay with grandparents during the recuperation period. We all had jobs to do to help Ben recover quickly and safely. We were ready and most of all Ben was ready to have the surgery.
The "pre-surgical clearance" evaluation at the pediatrician's office was a minor formality. Ben had a physical evaluation and blood work. I will never forget seeing my 10-year-old boy so frightened of the blood draw. He cried. Ben was growing up, but yet, he was still my little boy. Sadly, that encounter was one of the very last times Ben would fear the needle.
Ben and I waited in the doctor's office patiently. It seemed to be a long wait. The nurse who drew the blood returned. She said that there was something wrong with their machine and they needed to retake Ben's blood. Ben was very upset about that. He tried to resist, but I was able to force his arm out again for the nurse to re-stick him. The nurse appeared nervous to me and left the room quickly with the new blood sample.
Ben and I waited some more. Next, our pediatrician came in to the room. He said exactly this: "If your son's white blood count was 10,000, I'd say there's something wrong with my machine and not think more about it. If your son's white blood count was 20,000, I'd say there's some process going on that we have to look into, but I wouldn't be too worried about it. However, your son's white blood count came back at 97,000." I didn't know what that meant, really. However, I knew it was a blood disease. The pediatrician sent us to an outside lab to confirm the results. The outside lab found Ben's white blood count to be 107,000. (FYI: The normal range for children's WBC is 4000-8000). Ben's surgery was canceled.
I immediately had Ben admitted to a prominent teaching hospital in NYC. Ben had a series of blood work and a bone marrow aspirate. Within 2 days we had a diagnosis: Chronic Myeloid Leukemia (CML). That very rare disease is caused by the unfortunate translocation of 2 chromosomes, the 9 and 22; part of the 9 attaches to the 22 and vice versa. The new, leukemic, and bad oncogene, the "BCR/ABL" gene, produces a protein that results in the overproduction of white blood cells.
There is no cure. However, today there are maintenance medications that target the bad "BCR/ABL gene" and stop it from producing the protein that overproduces white blood cells. Ben takes a medicine, Gleevec, which has saved his life for now. Ben will always need medication to keep the leukemia away. So far, the medicine has worked.
CML a very rare cancer with about 5,000 cases diagnosed per year. Only a small fraction of those diagnosed are children. CML mostly impacts adults who are 67 or older. For instance, Kareem Abdul-Jabbar was recently diagnosed with the disease, he's 62.
After diagnosis, I realized that not too many pediatric oncologists have experience treating CML. Quite frankly; I wasn't satisfied with Ben's initial treatment. Ben's doctors were capable, but it seemed to me that some of them did not have a handle on Ben's rare form of blood cancer. Ben's doctors were very good, they just did not seem very confident in the CML treatment.
So, I researched the disease online and attended a medical program on CML. I searched for CML support groups and found a few for adults and one for children. After much diligent inquiry (on a European website), I found the doctor who developed Gleevec. Dr. Brian Druker treats CML patients at his clinic at OHSU in Portland, Oregon. Following some email correspondence, I knew Ben had to be evaluated by Dr. Druker. We needed to travel from Newark, NJ to Portland OR as soon as possible!
When your child becomes sick with a very rare disease, the initial thought is that no expense is too great to treat, perhaps cure, your child. That was my thinking, anyway. I had minimal insurance benefits under my former husband's COBRA plan. That plan had high deductibles and the cost of the medicine (which is refilled every month) is very high. Even though I have other insurance now, I still carry many of the initial medical costs (from 2008!) as well as the ongoing costs of treatment and care. Ben also receives therapeutic services that are not covered by my insurance (i.e., the plan will pay for certain general psychotherapists; however, if you want one that specializes in children, it may not cover them).
My family has been great. My children DO understand that I'm a single working mom and they don't mind doing without certain things. However, I felt I really drained everyone in this ongoing journey. So, I researched online for help with the expenses for travel from NJ to Oregon and back. I am blessed to have found Alex's Lemonade Stand Foundation. I was so inspired by Alex's story along with all the heroes on that site! I felt that Ben belonged there too.
I downloaded the Travel For Care Program application and forwarded it to a social worker at Dr. Druker's office. She helped fill it out and submitted it. It was a very quick and easy process. Soon, Shirley Moy was in touch with me and before even one month went by, I had roundtrip tickets for Ben and me to visit Dr. Druker. It was such a burden lifted!
We are so grateful for the assistance, that my kids hosted Alex’s Lemonade Stands at our elementary and middle school in October of 2009. They raised over $5,000. Our annual "BZNation" stand will continue to honor Ben, other survivors and their siblings every October and all proceeds will be donated to ALSF. We're happy to help.
The Travel For Care Program has done so much for my family. We are privileged to have received the support. We're thrilled to share our experience. We look forward to working with ALSF for a long, long time. The success of Ben's treatment is, in part, a result of the support we received from the Travel For Care Program. We couldn't get there from here without the Fund. Thank you.
Written by Tracey Dorrity, Ben’s Mother
Here's our Journey: