Guest post by Susan Schwartz
Hello, my name is Susan and I am a Survivor Mom. Eleven years ago, I became a member of the cancer parent club. No one ever asks to be a member, but, once you do your membership is forever. I am one of the lucky ones; my story has a happy ending. As a means of passing my good Karma forward, I have been an active LLS volunteer for 9 ½ years. The folks at the local chapter asked me to share my story.
March 11, 2003 on my son Carl’s 10th birthday, he was diagnosed with Non-Hodgkin’s Lymphoma. We followed all of the rules during the 12 months of treatment. We brought cupcakes into the clinic to celebrate his 11th birthday and final chemo treatment. Ten months later over New Year’s 2005, we watched the ball drop from a hospital room television. By 7am that morning, our hearts dropped as Carl was diagnosed with a relapse.
We were introduced to a whole new vocabulary that centered on “stem cell transplant”. The oncology pediatric ward would become an extension of our home for the next four months. We had to figure out how to juggle two full time jobs, our older daughter’s needs/schedule, and get used to a new normal for our active, independent almost 12 year old son. Family and friends helped. Our 16 year old spent school nights at one of her best friend’s home. The nurses were more than wonderful. Our docs were attentive and focused on our son’s care, but were often too busy to answer the probing, extended questions my husband and I were asking. Someone handed me the number for the Washington, DC chapter for the Leukemia & Lymphoma Society (LLS) and suddenly there was Sarah!!
Sarah was our angel of information. She was the patient education coordinator for the National Capital Area at the time. She listened to our worries and concerns. She found us current articles discussing the most recent research. Most importantly, she arranged for me to call into a national parent’s conference call that met every other Thursday night. These were the people who ever so gently shared the realities of external stem cell treatments. Brochures and FAQs discussed the facts. These moms and dads helped me understand the complexities of what I could expect. Through these conversations, I began to grapple with the truth that Carl might not have the Bar Mitzvah we had begun to plan.
My husband and I are both optimists. We believe that with a positive attitude and hard work, we can achieve just about any objective. Cancer has its own set of rules. The autologous stem cell procedure did not show the desired results within the early stages. None of our immediate family members were a match. The docs started searching the international data base. We started interviewing stem cell transplant centers. Miraculously, Carl’s counts suddenly increased and we were told the initial treatment had succeeded. We had two years of maintenance chemotherapy ahead of us, but the prognosis was positive.
As I mentioned, our story has a happy ending. Carl read from the Torah at his Bar Mitzvah. There was not a dry eye in the synagogue after he completed his speech that discussed the theme of Life Choices from the Torah portion, “I didn’t choose to get cancer, but I can choose how I behave now that I have cancer.” In two months, Carl will be 21 and is a junior at the Culinary Institute of America working towards a Bachelor’s degree in Culinary Science.
I’m still an optimist, but when it comes to cancer, I am a cynic. I am not convinced about happily ever. I appreciate what I have now which includes every frustrating, knuckle-headed moment a college son can bring his parents. And, every August when Carl goes for his annual check, I hold my breath until the results come back. I am a Survivor Mom. I refuse to allow myself to be lulled into a false sense of security. No one can guarantee that Carl’s cancer will NOT come back. This is why I am a committed volunteer for the Leukemia & Lymphoma Society. I believe in passing our good Karma forward. I believe in the science and research LLS supports. And, most importantly, working with the local chapter folks, I know the difference the patient support programs continue to make in the lives of blood cancer patients and their families.
Susan is a long-time LLS volunteer having participated in many campaigns, including Light The Night Walk & Team In Training, as well as dedicated countless hours of her time to assist in the office & at events. Learn more about Susan at http://successfulyet.wordpress.com.