Hear our stories: Childhood cancer awareness month
September is Childhood Cancer Awareness Month. This month, we celebrate our pediatric cancer survivors from Cohen Children's Medical Center. We'll share their stories with you - so check back for more!
At age 15 I was diagnosed with Stage II Hodgkin’s Lymphoma. I underwent surgery, chemotherapy for three months, and radiation for two weeks after. Cohen Children’s Medical Center became my home, and the staff including my doctors, nurses, and social workers became my family. The support and care my family and I received was above and beyond. My social worker stressed the importance of positivity, and positivity truly is what kept me going. In 2011, at the 5-year mark of my remission, a scan showed a tumor on a vertebra in my neck, which was successfully removed. Once again the doctors, nurses, and staff at Cohen and the Survivors Facing Forward Program were there for me in my time of need.
At age 24 I have a Bachelor degree in Psychology and am currently in grad school to obtain a Masters in Social Work, so I can help children and adolescents in the same way my social workers helped me. It has been 9 years since my initial treatment and 4 years since the tumor removal and I am thankfully in good health. The people I met during treatment who shared their stories and helped me along the way were truly inspirational. I am proud and very blessed to be able to refer to myself as a “cancer survivor.”
My journey with pediatric cancer began when I was 13 years old and was diagnosed with non-Hodgkin lymphoma. For about a year, I had been experiencing these odd pains on my knee that gradually worsened. My doctors all assumed someone my age; it had to be something simple like a muscle strain. When the pain was so severe that I could not move my knee, it became crystal clear this wasn’t just a muscle strain and we had to look further. I was then diagnosed and treated by the wonderful team at Cohen Children’s Medical Center, where I received chemotherapy.
Although the duration of treatment was thankfully short, it worked! A couple months later, I had received the wonderful news that I was no longer a “cancer patient” but a “cancer survivor.”
Surviving gave me the opportunity to graduate high school, go to prom, travel to other countries and so much more and it also made me realize my true passion for helping others. The amazing nurses at CCMC showed me what it means to be a nurse, and then sparked my desire to enter nursing. In high school, I began volunteering at my local ambulance service, where I became an Emergency Medical Technician, and continue to respond to medical emergencies in the community. Right now I am in college taking the courses needed to enter the nursing program, and in a few years I will be able to use my second chance to continue giving back!
“Our baby was but one year old when our older daughter kicked her in the head. It was an accident, of course, but about a week later, her eyes were not acting correctly. Naomi Sarah’s grandpa is an eye doctor and recommended that we see a colleague of his in Children’s Hospital of Philadelphia. The neuro-ophthalmologist recommended that she have an MRI and the results showed cancerous cells impeding our daughter’s eye movements. Naomi Sarah was diagnosed with neuroblastoma, a cancerous condition that developed in utero, and continued to grow over the past year! Our daughter’s health became a full-time job and my wife and I could not work.
The treatments included many rounds of debilitating chemotherapy transfusions. I shudder to tell you the effects that the subsequent stem-cell transplant had on her. It was heart wrenching to watch her suffer. But we prayed, and we actually saw improvement. After a few months, the doctors told us she seemed to be in remission!
But the good news was short-lived. The disease resurfaced and we were faced with the mind-boggling option of subjecting Naomi Sarah to radioisotope therapy, in which radiation is actually injected into her bloodstream in the hope it will attack the cancer wherever it would find it. With the help of HaShem, it seems that it did the job it was intended to do.
It is now almost four years since that ominous diagnosis was delivered, and the doctors tell us that all scans show she is cancer-free. Naomi goes to nursery school like any normal child. She is so special; when you look at her you would never know the torture that she lived through…and you would not know she is on experimental medication, given with the prayers that the disease will not surface a third time. So, in retrospect, a kick in the head was HaShem’s way of letting us know that we needed to take action. We are taught time and time again never to give up hope, even if a “sharp sword is resting upon one’s throat.”
Naomi is a currently a patient in our Survivors Facing Forward Program.
Dr. Fein Levy shares a laugh with her patient Joyce before her follow-up exam.
It’s clear to Carolyn Fein Levy: having had cancer as a child was the single most important event of her childhood and continues to impact her life everyday as a pediatric oncologist.
“I’m able to return the gift of life that was given to me by my caring family and devoted physicians,” she explains. “I can combine my medical expertise with my personal experience and serve as a role model for what’s possible after cancer. And I strive to provide an appropriate balance of medical care and emotional support for my patients.”
The feelings from years ago never quite go away, she says. “As an 11-year-old, when I should have been playing and learning about the world around me, I was facing the reality of a life threatening illness,” a malignant ovarian germ cell tumor. “Suddenly, I was taken out of the mainstream of life and thrust into an environment of doctors, nurses and hospitals.”
One of her first lessons in compassion came from the surgeon, who informed her family quickly about what to expect. “He taught me the importance of considering patient and parental anxiety while waiting for the doctor. So I try to visit my patients early and add some time to every waiting period, so I can bring news earlier than expected.”
After her surgery, Dr. Fein Levy’s oncologist discussed the need for chemotherapy and the 12 courses of chemotherapy she would undergo. “He told me about losing my hair, nausea and vomiting, that my blood counts would fall and put me at risk for infection. I vividly remember where I was sitting in the hospital and how honest he was with me. I felt that he would always tell me the truth and that we were partners in my healing."
Spencer was diagnosed with neuroblastoma stage lV(S) on August 17, 2001. He was two and half months old and presented with a swollen abdomen. Though his prognosis was “favorable” his tumor acted aggressive. In December of 2001 it was decided that we would begin chemotherapy. He had a mediport placed and began eight cycles of chemotherapy which lasted until October of 2002. In November it was decided that Spencer needed a stem cell transplant as a part of his treatment and we began to harvest his own cells.
Spencer underwent a stem cell rescue on February 12, 2003 and stayed in the hospital for a month. Since 2003 Spencer has had sporadic benign tumors develop but they were removed, 2010 was the last time a tumor has appeared and since then he has been living a full life. Now at 14 Spencer has just graduated junior high school and was accepted into his first choice high school at Holy Cross. He hopes to graduate and join the Marines or become a firefighter always reflecting on how his life was saved and wanting to help others or save a life himself. Spencer has a love for music. During his hospital stays music therapy was a major source of comfort for him.
He sings in his church on special occasions and was awarded a music award from his junior high school. He is also joining the band in high school. Spencer has never been afraid to tell others about his journey surviving cancer. Spencer has been enrolled in the Tiger Schulmann’s mixed martial arts for the past for four years and has reached his green belt. He has been in several competitions winning two first place, one second place, and two third place medals. Martial arts has helped him build his focus, confidence and self-esteem and has become a very important part of his life. He hopes to earn black belt status before graduating high school.