Acceptance Speech, Leukemia & Lymphoma Tree of Life Award; March 27, 2006
Ruth Hoffman, Executive Director
Candlelighters Childhood Cancer Foundation
I would like to express my deepest gratitude to the Leukemia and Lymphoma Society for this tree of life award. Thank you to: John Kamins, Robin Kornhaber, Pamela Edelstein, and the awards committee, and to long-time colleague Marie Lauria for the kind introduction.
On July 10th, 1987, my world forever changed. I was 31 years old, had a 9 yr. old son, a 7 yr. old daughter Naomi, a 1 yr. old son and I was 5 months pregnant with identical twin boys. My daughter Naomi had been sick for 9 months. She had been diagnosed by our family physician with a bug bite, virus (put on antibiotics), ear infections (had tubes put in), tonsillitis (tonsils and adenoids removed), and a neurotic mother – me! Despite these attempts to come up with some reason for her ‘failure to thrive,’ Naomi continued to deteriorate to a mere 32 pounds. She was no longer able to walk, so with deep concern, I took her to the emergency ward of our local Children’s hospital and on that day in July, I heard those words that will always sear my head, my heart and my soul that “my daughter had cancer.’
Naomi was diagnosed with Acute Myelogenous Leukemia (M5). It was 1987. Her prognosis was poor. Few survived AML in 1987. I was desperate for information about the disease, and possible treatments. But, in 1987, there was no internet to find out about treatment. There were no books for parents of children with cancer, and no books for kids with cancer. I was desperate to find someone who had survived this disease, as there was no child in that oncology practice who had ‘beat’ this type of cancer. The only resource that I found was a Readers’ Digest Story that someone left at my home while I was at the hospital with my daughter. It was a story about a young 20 year old woman who had successfully undergone an allogeneic BMT. Coincidentally, her name was Naomi. This was the only source of information that I had access to, in order to make an ‘informed decision’ for my daughter’s treatment – Readers Digest! It did lead to my decision to opt for a BMT for my daughter, which was fortunately successful. (Naomi is here with me tonight. Naomi can you stand up.)
A lot has changed since then. The L& L Society, Candlelighters, the American Cancer Society, and the NCI have all contributed to the development of comprehensive resources for families.
We now have books, access to the internet, chat rooms, listservs, patient conferences, community support groups for all types of cancer, and all stages of disease. Survival rates have increased. In fact, we are constantly hearing the words that “75% of children with cancer are CURED!” 85% of children with ALL are CURED! When we see images of children with cancer in magazines, on websites, and in brochures, we are presented with happy smiling faces. It might be perceived that childhood cancer is no longer a ‘big deal.’
Does Childhood Cancer Still need support? My resounding answer is YES! Now, more than ever! While there are types of childhood cancer that have improved in survival, there are so many cancer types that have not changed. The 5 year survival rate for AML is not much different than when Naomi was treated. The 5 year survival rates for neuroblastoma stage IV, metastatic bone cancer (almost all childhood bone cancers are metastatic at diagnosis), brain stem gliomas are all dismally low. The overall 5 year survival rate for all childhood cancers have not changed since 1998.
… Of, those children who do survive, many received high doses of toxic chemotherapy and radiation at a time in their lives when they had a growing body and developing brain. Two thirds of childhood cancer survivors experience some late effect of their treatment. One third of those are clinically classified as being moderate to severe and include health problems such as cardiomyopathy, severe learning disabilities, endocrine dysfunction and secondary cancers- all caused by the original cancer treatment.
Naomi is an example of this: She has cataracts, heart damage, loss of fertility, and last year received treatment for metastatic papillary thyroid carcinoma – directly caused by the total body radiation that she received to treat her first cancer. This second treatment left her with an inability to produce saliva as well as destroyed her tear ducts.
We HAVE to become smarter with how we treat children with cancer! This is the era of genetic treatment of cancer. Large research initiatives are underway to identify the genetic fingerprints of many types of adult cancers. While childhood cancer led the way to new chemotherapy cocktail treatments for adults with cancer in the 70’s, funding for targeted therapeutic research for childhood cancer is minimal, and lagging behind today’s adult cancer research initiatives. As organizations like us - the L&L Society, and Candlelighters as well, we must take responsibility for the fact that we are potentially partly responsible for that. We have created a media impression that childhood cancer is CURED! While a 5 year survival rate can generally be correlated with a CURE for the adult cancer population, it is NOT a good measure for a child who finishes treatment at the age of 3! Five years for that cancer patient makes them all of 8 years old!
There is no greater patient population in need of reduced treatment toxicities due to the fact that a child’s body and brain are developing at the time of treatment. Childhood cancer must receive the attention of targeted therapeutic research funding. We must find ways to KILL just the CANCER and not the child’s entire body – to Kill the Cancer and Not the Kid! We MUST not forget the smallest patient population. We must continue to lead the way as organizations in our fight to bring new emerging genetic based therapies to the littlest cancer patients in this country. With the support of the L&L Society and Candlelighters, I believe we can do just that!
…Because kids can’t fight cancer alone!