Ethan's story: Making a life by what we give

In my second year of college, I joined a campus organization that placed me and other volunteers in various local hospitals to participate in fun activities with pediatric cancer patients. I would have never imagined being on the receiving end of this paradigm 20 years down the road. 

We brought my 6-year-old son, Ethan, to the emergency center at Texas Children’s West Campus on Feb. 11, 2017, due to extremely low hemoglobin levels. Ethan had been experiencing brief, low-grade fevers with no other symptoms, and we were initially told this was likely the result of a virus. When the lymph nodes on Ethan’s neck started to gradually swell, with one side larger than the other, a complete blood count (CBC) test was ordered and presented alarming results.

Following a chest X-ray in the emergency room, the supervising physician came into our room and told us there was a malignant mass in Ethan’s chest, creating pressure against his heart. In my head, I immediately recognized that “malignant” was not the word I was hoping to hear. We were transferred to the pediatric intensive care unit (PICU) at Texas Children’s Hospital in the Texas Medical Center, where oncologists would meet us for more tests to confirm his diagnosis. Ethan spent 24 hours in the PICU where doctors closely monitored his heart and organ functions, and was then transferred to the oncology floor where he stayed inpatient for a week. Once a lumbar puncture and bone marrow biopsy were performed, it was confirmed that Ethan had T-cell acute lymphoblastic leukemia (ALL).

It has been a year since Ethan’s diagnosis, and the details of this journey so far always seem to become blurry in my mind, as if part of a movie played in double speed. What I do remember is the kindness from everyone we’ve met at Texas Children’s, both within the hospital and in the outpatient clinic where he continues to receive treatment. I can still clearly picture the ER nurse who looked me in the eyes as Ethan was being moved to the ambulance stretcher for transport to main campus. I was completely in shock from the devastating news, and overwhelmed by the activity around us. She walked up to me, held me tight and told me: “Be strong, mama. Don’t forget to take care of yourself. You need to eat and sleep in order to take care of Ethan.” We have been blessed with this kind of sensitivity, both for the patient and family members. This sensitivity was present when Ethan’s doctor expressed concern and consideration for his physical healing and mental, emotional needs. It was there when his nurses gently accessed his port and delivered kudos and hugs when a milestone in his treatment was reached. It came through when child life specialists patiently calmed Ethan down before dreadful procedures, and when they talked to his sister, Gaby, who was having a difficult time digesting the reality of his diagnosis.

Every individual we worked with at Texas Children’s went above and beyond the call of his or her profession for us. We are so grateful for all of them, because they continue to bring us hope, empathy and even laughter, which all contribute to a positive and nurturing healing environment for Ethan. Because of this, our family’s desire to give back is even stronger than it was before. One way we love to give back involves running for charity and volunteering in events that raise awareness for pediatric cancer. In honor of my son and his continuing fight, I like to dedicate my own running to raising awareness for childhood cancer and the incredible need for more research. In January, I ran the Chevron Houston Marathon with Snowdrop Foundation, an organization that provides funding for continued pediatric cancer research at Texas Children’s Cancer Center and scholarships for college bound pediatric cancer patients and childhood cancer survivors. This month, our family is participating in the Texas Children’s Family Fun Run, a non-competitive 1K and 3K run/walk presented in collaboration with the Houston Marathon Foundation at Texas Children’s Hospital West Campus. Families with children of all abilities are invited to participate!

My daughter once asked me why all of these families of cancer survivors volunteer so much or start charity organizations of their own. I told her: “It’s because giving back is a big part of the healing process.” When we shift the focus away from ourselves and place it on the needs of those around us instead, it brings more joy and gratitude to our spirit. In the words of Winston Churchill: “We make a living by what we get, but we make a life by what we give.”

Post by:

Carissa Helms, mother of patient