It's hard to believe that it has been seven years since our son Daniel was diagnosed with marginal zone monocytoid B-cell lymphoma. During this time, we have had wonderful resources available to us for Dan's prompt diagnosis, treatment (radiation), and follow-up. Thankfully, there has been no indication of a return of Dan's cancer. He's a 2006 UVA graduate. If you visit Charlottesville, stop into The Virginian, the restaurant Dan is co-managing.
It was an incredible shock when we first learned, in the Spring of his junior year of high school, that Dan had cancer. The diagnosis was made after a series of events: an enlarged lymph node under Dan's neck that he brought to our attention (we thought it was acne); Dan's pediatrician who "thought it was nothing" but referred him to a specialist; the specialist who "thought it was nothing" but decided to remove and examine it to be safe; the pathologists who couldn't visually detect a problem but referred it on for further tests; test results that detected an "anomaly"; and finally, diagnosis by a well-respected oncologist at NIH.
The roller coaster continued as we found out more about the cancer Dan had and how to treat it. Marginal zone monocytoid B-cell lymphoma had only recently (within the last 10 years) been identified as a cancer, and it was extremely unusual to be found in someone Dan's age (it usually was found in older women). As a result, there was no widely-accepted treatment protocol. We felt uncomfortable having Dan be treated by a doctor who had never seen this cancer or had not treated this cancer in a person Dan's age. So, Pam and I became very familiar with various hospitals and oncologists in hospitals around the country in our search for proper treatment. Ultimately, we found Dr. Tanya Trippett at Memorial Sloan-Kettering Hospital in New York City. Not only was Dr. Trippett familiar with marginal zone monocytoid B-cell lymphoma, she was tracking the disease in the young adult population. Together we decided to have Dan receive 18 days of radiation treatment at Johns Hopkins University Hospital and to involve Dr. Trippett when interpreting all follow-up scans. In the six years of follow-up, there have been many moments of concern (several false positive results early on and a scare just this past summer), but we have been blessed by the fact that Dan can look forward to a life without cancer.
Like any family effected by cancer, we learned more about cancer than we ever wanted to know. From the whole process, we have several observations:
- As bad as it was for us, there are many families which are dealing with much more dire situations. The first time (actually, every time) we visited the pediatric oncology ward, we were struck by the courage exhibited by all the children battling life threatening diseases, and their families who are grasping at any advances in knowledge or technology that will save their child. We essentially arrived at the ward with a 6'4" healthy-looking teenager with all his hair; for many others, it is a daily fight to live.
- You don't know how much support is available for you until you really need it. Our friends and family were wonderful and supportive to us. We didn't realize it at the time, but the Leukemia and Lymphoma Society funded significant research that was directly helping the understanding of Dan's cancer, and the knowledge and technology for his treatment.
Pam and I will never be able to express how blessed we feel having Dan successfully treated. It is for this reason, and in memory of Pam's father, I. Mead Hayward, who died of chronic lymphocytic leukemia in 1991, that we have participated and will continue to participate in TNT.
John
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