The Survivor: Life After Cancer
Mom details her family's life after diagnosis of Ewing's Sarcoma
Matthew Grogan’s first day of kindergarten started out like any other child’s. He had a brand new back pack, all the supplies on the list, and was excited to meet his teacher and make new friends! He smiled proudly for his first day of school picture and off we went. Little did he know, what we already knew, that life was about to throw him a curve ball that would change the course of his life forever.
On July 28, 2006, just days before school would begin; we heard the words that no parent wants to hear… “Your child has cancer.” It was the most terrifying; turn your world upside down, day of our lives. Matthew was 5 years old and had been diagnosed with a large Ewing’s Sarcoma tumor in his right femur. He had complained of pain in his leg on two separate occasions that were weeks apart. We shrugged it off as growing pains. The third time Matthew complained, it was a summer afternoon and he had been running around outside. Later that night, he was tired and went to bed early. When I kissed him goodnight, he felt really hot. He had a fever, and no other symptoms … except his leg pain. I knew something was wrong, but never thought for a moment that it would be cancer. We headed to the pediatrician first thing in the morning and within an hour, an X-ray revealed a very large tumor. We were told it looked malignant. Our cancer journey had begun.
His first day of kindergarten would also be his first admission into Cook Children Medical Center. For the next 13 months, Matthew spent a minimum of four to five nights at Cook Children’s every three weeks receiving chemotherapy. Cook Children’s soon became our home away from home. Dr. Jeff Murray was Matthew’s oncologist and he did an amazing job keeping us thoroughly informed of how they would treat and care for Matthew. Did I mention we were terrified? He talked us off the ledge, and we soon dug in, clung to our faith, and began the fight for our child’s life.
Initially, Matthew had to adjust to so many invasive procedures that no 5 year old should have to experience. The first time his port was accessed with a needle for his treatment he was so anxious and tearful. Child Life came to his aide to distract him and before we knew it, we were all laughing. His treatments led to the inevitable; nausea/vomiting, hair loss, and mouth sores. Some days were better than others. But thru it all, everyone was upbeat and positive from the nurses, the child life specialists to the staff that brought our meal trays.
For something that was REALLY hard, Matthew often felt like he was there to play. Water gun fights with empty syringes, daily matches of Uno with the nurses, and lots of smiling and laughter was common. Was this really an oncology floor? If we had to be in a hospital so much of the time, we soon learned we were fortunate to have not only skilled physicians and staff, but people that made it bearable. Matthew actually looked forward to coming in!
Initially, we were told that amputation might be Matthew’s only surgical option to get rid of the massive tumor. Five months into his chemotherapy treatments the MRI revealed that the medicine had shrunk the cancer significantly, allowing another surgical option.
Matthew had his tumor removed at Texas Children’s Hospital in Houston in December, 2006. In a 14-hour -surgery, seven inches of his femur was removed, and his own tiny fibula from his lower leg, was grafted in its place. A plastic surgeon then meticulously vascularized the bone: giving it a blood supply so that it would remain alive, allowing it to thicken and grow into a femur-sized bone over time. We were told the healing could be a bumpy ride and it was.
The upper junction of the grafted bone fractured leaving Matthew in a full body cast for seven months. After being wheelchair bound for a year and a half, Matthew finally was allowed to be up and relearn how to walk with his new bone. We were on the road to recovery, or so we thought. It wasn’t long before we received the news that his complications were not over. Matthew’s growth plate at the knee had closed due to trauma from the tumor resection. He would need to wear a shoe lift to make up for the difference in his leg length, and in time, he would need to undergo subsequent surgeries to lengthen his leg and correct the discrepancy.
His first leg lengthening surgery occurred at the age of 10, when he was placed in a large metal frame called an ilizarov. The apparatus involved three large rings, pins in his bone, and a daily regimen of turning screws and physical therapy which ensued for 5 months. Two inches of beautiful new bone eventually grew into the space that was created.
A year later, doctors nicked the growth plate in his left leg to help close the gap. Matthew was still left with a 3 inch discrepancy to recover. In April of 2015, Matthew had his final leg lengthening surgery. With 3 inches to obtain, and what turned into a very slow healing process, Matthew was in the iliazrov frame for a total of 16 long months. We lived from X-ray to X-ray waiting to hear those magical words, “you are healed enough to remove your frame.”
On July 14 , 2016, Matthew had surgery to remove the ilizarov for good! Although he would need to continue with his crutches a while longer, Matthew was beyond thrilled to reach this huge milestone. His legs were finally even again and would be for the rest of his life. The timing couldn’t have been better as we were just two weeks away from Matthew’s 10 year survivorship. A celebration was in order!
My husband and I surprised him with a fun night out on the town with his closest friends, most who have walked beside and supported him since kindergarten when he was first diagnosed. They were chauffeured around Fort Worth in a Hummer limousine with music blaring, lots of singing, and pure elation. Victory!
Looking back over the past 10 years, we couldn’t be more grateful for the doctors, nurses, and child life specialists at Cook Children who helped Matthew become a survivor! Matthew continues with yearly follow ups in the Life After Cancer Program. Lisa Bashore and Dr. Heym keep up with his tests, keep us current on survivor research, and ALWAYS keep us laughing!
From the time we entered the doors at Cook Children, it became our second home. The amazing, caring staff became our family. We will forever be grateful for the blessing Cook Children has been for Matthew and our family.
He stood strong. He fought hard. He won!!! Celebrating our 10 Year Cancer Survivor!!!
To support kids like Matthew and the Cook Children’s Hematology and Oncology Center, visit erasekidcancer.org. September is Childhood Cancer Awareness Month. This month, we're pulling back the curtain to share what Cook Children's is doing to fight pediatric cancer. Stories will be shared to reflect the hearts of our caring professionals and volunteers, the brains of our clinicians and researchers and the courage of our patients and families.