Pediatric Cancer Series Part 3: Ryan’s Story

Mary Beth Sallee

Reporter, Hart County News-Herald

 

Last week, The Hart County News-Herald shared Ayden’s story. This week, we bring you the journey and story of Ryan Rutledge.

Osteosarcoma is the eighth-most common form of childhood cancer. Ewing sarcoma that starts in a bone is the most common tumor in the osteosarcoma family. However, Ewing sarcomas (tumors) themselves are not common. About 1% of all childhood cancers are Ewing sarcoma.

Approximately 200 children and teens are diagnosed with Ewing tumors in the United States each year. Ryan Rutledge was one of those teens.

Ryan was an active 13-year-old seventh-grader who loved playing football, basketball, and baseball. But in January of 2017, while playing travel basketball, he began experiencing pain in his right leg. Ryan could be seen visibly limping up and down the court at times. Although he pushed forward, he then also began having pain in his leg during the night.

“It came during the time when he was hitting a typical growth spurt like most of his other friends, so we attributed it to growing pains since we weren’t able to attribute it to any specific injury. The pain would come and go and didn’t seem to be in the same specific area,” said Ryan’s mom, Tina. “By April 2017, despite trying muscle relaxers, physical therapy, and other treatments, the pain became so relentless and intense that we knew something was definitely wrong.”

Ryan was taken to his pediatrician. The initial x-ray did not show a particular injury or concern. However, due to the severe pain that Ryan was experiencing, he was seen by an orthopedic specialist in Bowling Green the next day. Another x-ray was taken.

“It wasn’t five minutes before the nurse peeked in and asked me if I would step down the hall to the doctor for a minute, and Ryan could just wait there,” Tina recalled. “I walked into his office, and there were two large computer screens side by side with an image pulled up. Every fiber in my body started to tingle. My mom alarm told me something was not right about this.”

“The doctor walked in and said he had seen his original hip x-ray and it appeared normal, but something caught his eye, so that’s why he had us take a second x-ray of a larger area,” Tina continued. “He proceeded to point out a mass on his right femur that was protruding out into his muscle and soft tissue, which was causing the extreme pain. I was not prepared at all for what came next. He said while there was a small chance it could be some kind of infection, it could also be bone cancer. My ears started ringing and my heart was racing. I have no idea what he said next…I stood there completely stunned, staring at the x-rays. Absolutely nothing can prepare you to hear those words.”

The doctor informed Tina that he had a colleague at the University of Kentucky medical center with experience in this area, but it would take about a week to get an appointment. However, the doctor did schedule Ryan for an MRI for the next day. Ryan was in so much pain that it was difficult to lie still for the MRI. What should have been 30 minutes took an hour and a half.

The following day on April 28 of 2017, it was confirmed that Ryan had primary bone cancer, either osteosarcoma or a rarer form of osteosarcoma known as Ewing’s Sarcoma.

“We were absolutely devastated and started researching what this was, where we should take him, and what we needed to do,” Tina said. “What we found on a Google search was terrifying. All we could think about was keeping him here with us, even if it meant amputating his leg.”

“We still couldn’t tell anyone what was happening since we didn’t want anything to get back to Ryan until we had answers, but most importantly, a plan,” Tina continued. “We were prepared to fight, no matter what that meant.  How do you look your child in the eyes and tell them they have cancer? How can you answer them if they ask you if they are going to die? We spent the entire weekend praying, researching, and praying more.”

Ryan was seen by a doctor at the UK Markey Cancer Center in Lexington. The UK doctor was very familiar with Vanderbilt University Medical Center’s program and the doctors there. He ultimately told Tina and their family that Ryan needed to go where their support system was, as this was going to be a marathon and not a sprint. The Rutledge family drove straight to Vanderbilt in Tennessee that afternoon and met with Dr. Ginger Holt, a surgeon who also specialized in bone cancer.

“She was a God-send and was very optimistic about being able to remove the tumor completely and salvage his leg, which was a secondary concern to saving his life,” Tina said. “The tumor itself measured six inches in length, which was classified as large. It was not in his growth plate, which was a blessing. She said she could remove the tumor, replace it with a cadaver bone, and connect it with plates and screws just like piecing in a pipe. She made us feel very at ease when we were terrified, and for the first time in a long time, we felt hopeful.”

Later that same week, Vanderbilt oncologist Dr. Borenstein ordered a series of tests to see what stage the cancer was in and to determine the exact type of cancer in order to develop a treatment plan. Over the next few days, Ryan also had an echo of his heart done to be sure his heart was strong enough for chemo and to get a baseline for any future damage the chemo may cause, a biopsy of the tumor, a bone marrow biopsy, a full body scan to look for any other cancerous activity, and another MRI of his femur. A port-a-cath was also placed so that Ryan could be ready for chemo.

When all the test results were in, a chromosome mutation identification confirmed the diagnosis of Ewing’s Sarcoma, the rarer form of the osteosarcoma family of primary bone cancers.

“It affects only about 225 children and teenagers each year, accounting for 1% of childhood cancer,” Tina said. “The five-year survival rate for Ewing’s Sarcoma is 70%, which means that 7 of 10 children live five years past when the cancer was found. I can never explain how surreal it was to even be considering your child’s life in terms of percentages of mortality at age 13.”

Ryan’s roadmap for his treatment plan consisted of six chemotherapy inpatient treatments given every other week, surgery to remove the tumor, and then eight more treatments after surgery. In total, he received chemotherapy for almost a full year.

Ryan’s hair began falling out in clumps during his second hospital stay just two weeks later.

“He was very annoyed that it kept falling out in his eyes, was all over his pillow, and making him itchy but he wanted to wait until we got home to shave it off,” Tina recalled. “The act of shaving his head was an emotional one. We smiled and tried to joke and make the best of it, but this dramatic change in appearance was now going to be a constant visual reminder of his battle.”

After six rounds of treatments, in August 2017 Ryan had 8 ¾ inches of his right femur removed just below his hip to just above his knee. It was replaced with a cadaver bone and attached with numerous permanent plates and screws to keep it in place with 51 staples to close the incision.

“We were overjoyed to learn that the pathology report showed the cancerous tumor was completely dead inside his bone. Answered prayers!” Tina said. “However, he still had to finish the eight treatments after the surgery to help ensure it didn’t reoccur. He spent four days in the hospital after his limb salvage surgery and, while it was extremely painful, it got a little better each day. He had to be completely non-weight bearing for three months, so he was in a wheelchair until he could start to slowly add a little weight each week, using a walker and eventually a crutch for the next several months while his bone healed. Mobility was very difficult, but he never complained.”

Ryan took his last chemo on January 7, 2018, and was confirmed to be in remission. However, Ryan’s battle continued on.

In March of 2018, Ryan complained of leg pain. An x-ray confirmed that two of the three screws at the top of the allograft (cadaver bone) near the hip had snapped. Dr. Holt informed the family that as the allograft seats into position, plates and screws are sometimes put into a bind. If the last screw broke, it would mean another surgery.

The last screw did break a couple of weeks later. In April of 2018, Ryan had another plate and more screws at the hip, going back through the same incision. He had to begin all over again with being non-weight bearing for three months and then weeks of slowly adding weight by using a walker and eventually crutches.

In March of 2020, Ryan began trying to hit a baseball in the cages and pitch a little. He also was slowly getting back into doing some basketball workouts with friends. During one of these workouts in December of 2020, he felt a pop and pain in his leg.

“Fearing the worst yet again, we had it x-rayed. Dr. Holt couldn’t see anything after looking at it for several days. We were so relieved, so we rested it to see if the pain improved,” Tina said. “After a few weeks of not much change, we went to see a completely separate orthopedic in Nashville thinking it may be a hip socket issue since there were no other answers. When we got there and this doctor took his own x-rays, he came in and asked a little bit about Ryan’s background and cancer and the surgeries. He said, ‘I don’t know how to tell you this, but your femur is broken.’ Ryan’s eyes filled with tears while he blinked them back, and I felt physically ill.”

Not only was Ryan’s femur broken, but it was completely offset. The allograft had cracked and failed. The doctor recommend a full hip replacement this time around since there was not enough bone left at the femur head to be able to embed a rod from hip to knee.

“The downside is that the hip joints wear out over time, typically about 25 years depending on use, so he (the doctor) told Ryan he would be able to do most all normal activities,” Tina explained. “Just limited running and pounding on the hip to make it last as long as he could.”

In December of 2020, Ryan had this third surgery which completely removed all of the plates and screws and the failed allograft, replacing it with a metal hip joint and a metal rod that is seated four inches into the small section of the femur just above the knee.

“The blessing in this last surgery was that Dr. Holt was able to lengthen his leg the extra inch so he would be balanced again,” Tina explained. “With this surgery, while requiring an even longer incision than the first time completely hip to knee, Ryan was able to walk out of the hospital in two days. It was painful and meant the start of another long road of physical therapy to build back the muscles that had been damaged three times now to access the bone, but his leg was even and he could put full weight on it from day one. We were very thankful and blessed.”

Ryan is continuing physical therapy but making great strides in strengthening muscles to both hold the hip socket in place and eliminate the limp from having those muscles completely separated during three surgeries. He continued to have scans and blood work every three months for the first two years, then every six months, and then annually up to five years when he would be considered “cured”.

“Ryan’s four-year checkup with his oncologist will be in January of 2022,” Tina said. “Scans are always stressful, but we put our faith in God and rejoice in how far Ryan has come.”

Throughout this entire journey, Tina said the community support and love for their family have been more than they could have ever imagined.

“Munfordville Baptist Church held a community prayer vigil and prayed over Ryan before his treatment,” Tina said. “Jeremy and Nicole Atwell with Vinyl Monkey printed and sold #RyanStrong t-shirts with classmate Hannah Williamson’s saying, ‘It’s only one inning, not the entire game’ on the back.  Ryan’s bracelets had the Bible verse Philippians 4:13, ‘I can do all things through Christ who strengthens me.’ Countless people messaged and texted us, brought us food, helped transport our other two boys, Tyler and Kyle, while we were at the hospital. There are too many people to thank publicly, but we know each and everyone, and we will forever be humbled by their kindness and love. We are truly blessed to be part of this amazing community!”