Carly’s Story

Carly before diagnosis

Carly before diagnosis

In late June of 2010, our 15-year-old daughter Carly told us that she had a sore throat. Not one to complain, she continued to enjoy being out of school and relaxing with the start of summer. Carly, her two brothers, my husband, and I were looking forward to a vacation to the Outer Banks, NC with our extended family. There were 16 of us going!  We were leaving on July 16th.

In the beginning of July, Carly came downstairs from her room and showed us her throat. It actually took me aback because it was a very deep, beefy red color. It was something unlike anything that I have seen in raising 3 children. I immediately took her to the pediatrician suspecting strep throat, since our youngest son had just had it at the end of June. The result was negative. I was told it was viral.

Over the next week or two I wound up taking Carly back to the pediatrician two more times because she wasn’t improving and, in fact, was worsening. I requested that she be tested for mono. The results came back negative. Again, I was told that it was viral. Her lymph nodes had begun to pop out on her neck, shoulders, and behind her ears. Her left ear blew up three times its normal size, her gums were majorly inflamed, red and swollen and had begun  working their way down her teeth, she couldn’t eat, and she was having trouble drinking. She was also having trouble breathing out of her nose. After three trips to the pediatrician and even the dentist, I finally demanded that they run a complete CBC, which they shockingly had never performed. On July 15, 2010, a day after the blood test, we received the phone call that would change our lives forever. Carly had leukemia. Our world came tumbling down and our lives as we knew it would never be the same. We were told to pack our bags like we were going to stay a while and get to C.H.O.P. (Children’s Hospital of Philadelphia) as soon as we could.

We “moved” into CHOP from July 15, 2010 to March 21, 2011, where Carly received the most intensive chemotherapy that is given. She was diagnosed with AML (Acute Myeloid Leukemia), a leukemia more common in adults than in children. We will never forget the trip from clinic straight to the oncology floor on July 15th. Carly was literally diagnosed and whisked away to 3 South. It was all so foreign and frightening to all of us. It was a strange land. It was a place I refer to as the cancer planet.

Carly began chemotherapy July 16th. Her chemotherapy required her to stay in the hospital for 30 to 40+ days straight, return home for a week or two, and then back to CHOP again for 30 to 40+ days again, repeating the same schedule for the next 9 months. Her diagnosis and therapy also required her to stay in her room throughout her entire stay. But Carly never complained or felt sorry for herself throughout her lengthy battle with “Leuk.”. Instead she faced each day with a smile, grace, and courage and was a positive force for fellow patients!

Warding/fighting off infections, endless spinal taps, bone marrow aspirates, adverse reactions to the high doses of chemo, etc. finally slowed down in May of 2011. We are happy to say that Carly is in her second year of remission (fingers always crossed) and back to living her life each day to the fullest. She continues to receive follow-up care at CHOP.  Carly is still smiling with her big dimples and has just committed to West Chester University for the Fall of 2013, where she is planning to receive a degree to be a Child Life Specialist. Her goal is someday to return to CHOP and work on 3 South with pediatric oncology patients.

Carly’s extremely positive, upbeat personality got her through this incredible journey. The rest of us were left with no choice but to follow suit!  Our community, friends, and family never left our side for one minute during this challenging journey!  We cherish each day and the memories that we make together.

Stay positive and fight the fight!!

- Suzanne & Bob Stephens





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