September is usually a time when kids are getting back into the swing of school, temperatures are cooling off and people are gearing up for fall and winter. Summer starts to fade into the distance as flip flops get worn less and fall jackets come out of the closet. September is also a whole month dedicated to bringing awareness to childhood cancer. For me, it is a time to honor what has already happened in my life and also the experiences of other patients and families affected by childhood or teen cancers. It is a time to think about the hopes for the future of people who are already surviving and those who are yet to be diagnosed.
The last September that I was truly “healthy” was when I was 15 in the fall of 1998. I was excited to start back for my sophomore year of high school and I had just made the junior varsity field hockey team. During field hockey season my back began to hurt. It throbbed while at the mall with my friends on a Friday night and while running down the field during practices and games. The pediatrician thought perhaps my backpack was too heavy. The pain just kept getting worse each week which led into basketball season.
One Friday morning at the beginning of December, during my 6am basketball practice, my feet started to feel numb. By the next morning, the numbness had started to spread up my legs. My mother kept me home from school and called the orthopedic doctor’s office (as we were not sure who to call since I had always been a healthy kid except for the time I broke my arm in 7th grade). The office said it sounded more neurological and referred us to 3 pediatric neurologists. One said they could see me in a month and another said in a few days. The third called back and said he was in the office doing paperwork and not seeing patients that day but to come in anyways.
It turns out if I had waited for the first two appointments, I likely would not have made it. The neurologist we saw on his “day off” found an aggressive egg-sized tumor strangling the top of my spinal cord. My body was shutting down rapidly and my breathing was already being suppressed. After emergency surgery to remove as much of the tumor as they could, I regained feeling and was fortunate to not have any paralysis. I was diagnosed with Askin’s Tumor, a rare and often fatal cancer, that is a subset of Ewing’s Sarcoma. My life has never been the same.
That defining moment of diagnosis led to many years of treatments and relapses. With that came endless rounds of chemotherapy, radiation, surgeries, ports, a stem cell transplant, pills, PICC lines, MRIs, CTs, IVs, physical therapy and much more. Many times it brought me close to death. It led to many long term side effects that affect me to this day such as lung damage (and ultimately losing 1 lung), thyroid damage, arthritis, chemo brain, early menopause, gall bladder removal and so on. I am regularly checked for other long term effects such as other types of cancer and heart damage.
While I have been through a lot and am extremely grateful to still be here, I have so many hopes for the 43 children who are diagnosed every day and the over 60% of childhood cancer survivors who suffer late-effects, such as infertility, heart failure and secondary cancers (CureSearch for Children’s Cancer). I have hopes for all of us with rare cancers whose survival rates are much lower than the average. I have hopes for continued medical advances, more lives that are not stopped short and more ways to reduce long term side effects.
Rachel Lozano was diagnosed with Askin’s Tumor (sarcoma) on her spine at 15. The cancer recurred when she was 18 and 19 years. By the third time, she statistically was given a 0% chance of living past a few months as the tumor was between her heart, lung and spine and no one had ever survived a relapse of Askin’s Tumor following a stem cell transplant. Through many miracles, blessings and amazing medical staff along the way, she has had no sign of cancer for about 12 years. The past couple of years have brought more long-term medical challenges including the removal of her entire right lung and many complications since that surgery. Rachel has been married for 8 years and obtained degrees in interior design, art, and a Masters in Art Therapy and Counseling. She leads a very full life as an art therapist (at a pediatric hospital where she was treated), international inspirational speaker, writer/blogger and artist. She is obsessed with life and enjoys helping others, traveling, working out and being with family and friends. Rachel was awarded Glamour magazine’s Woman of Your Year in 2008. Her speaker page can be found on Facebook at Rachel Lozano: Inspirational Speaker and blog at Obsessedwithlife.com.