Amanda Riley Foundation

Supporting Children Battling Cancer
      Making a SMILE at a time! 

On September 4, 2015, what started as a normal day turned into a day we will never forget. We found out that our son Austin had not only a blood clot, but also a malignant mass in his pelvis/hip area. The blood clot was caused by the tumor and is how the tumor was discovered. After several test, scans and a biopsy we were told what no parent wants or expects to ever hear, "your child has cancer." In a day our world turned upside down, and our life now is a "new normal." Prior to his diagnosis on September 4th, Austin had been under the care of an orthopedic doctor since May 22nd, and was being treated for muscle weakness. He had been complaining of an aching type of pain in his left knee and pain on the side of it as well. Since a knee x-ray showed nothing of concern physical therapy was prescribed and he was being treated again…for muscle weakness. After 5 sessions of physical therapy the same aching pain began to extend to the hip. A hip x-ray was done at a follow-up visit and still nothing was abnormal according to his doctor. After 3 more sessions of therapy Austin developed a limp which concerned us, but his doctor and his physical therapist still felt that his issues were due to muscle weakness. On September 4th Austin was getting ready for school like any normal day when he had a sharp pain in his groin. This pain was unlike the pain he had before. The sharp pain was due to a blood clot caused by the tumor, and is how his tumor was found and how this journey began. We now know the pain he was having was called "deferred pain" and was caused by the tumor that was in his pelvis and hip. Austin was diagnosed with a stage 2 "rare soft tissue sarcoma.’ The tumor was located in the pelvis/hip area and was wrapped around bone, nerves and muscle which prevented it from being surgically removed at the time. Austin endured 6 cycles of the strongest chemotherapy and 5 weeks of very intense radiation. Austin's treatment plan would be for the next 9-12 months. Austin began chemotherapy treatments on September 21, 2015 and finished the last one on February 11, 2016. He finished his 5th week of radiation on November 16th. The doctor's plan of treatment was to shrink the tumor and then surgically remove it. Once all chemo and radiation treatments were done, a post scan was done to check and see how the tumor had responded to treatments. Luckily the tumor responded to treatment and the tumor had shrunk to half of its original size and was now operable. Because the tumor had crossed his midsection Austin would have to have a hemipelvectomy for his best chances of long-term survival. A hemipelvectomy is a high level amputation of the hip, pelvis and leg. On March 22, 2016, with a team of specialist, Austin had his life-changing surgery at Egleston which took 17 hours for the surgery itself. We would not see Austin again until 22 hours later in PICU. This would be the longest day of our life both mentally and physically. Because Austin's tumor was below the spine and in his sacrum, his sacrum was removed and they took his distal femur and then fused it to his spine. Because Austin’s surgery was so complex, it made medical history as the first ever done like this in the U.S. Unfortunately; on April 1st Austin would go back in surgery 2 more times in 3 days for a wash out due to an infection from his surgery. After 2 weeks in Egleston following surgery along with one more surgery to remove the port from his chest, Austin was transferred to Scottish Rite for 6 weeks of inpatient rehabilitation. Austin has been 6 months cancer free as of July 7th. He has just recently been taken off Lovenox injections for the blood clot he had in the beginning after 10 months of being on them. He is currently on partial weight bearing right now until his spine completely heals. Once his spine is completely healed he will be cleared for full weight-bearing and he will be able to finish the rest of his much needed rehabilitation at day rehab at Scottish Rite. Until then, Austin is continuing with outpatient PT/OT close to home as a bridge until his spine is healed.

When Austin got cancer at 17 years old, as a parent you go through many emotions, stress, anger and just being scared. Barbara Riley and the Amanda Riley Foundation were there for us from the very beginning. Just days after Austin’s diagnosis we received a box in the mail from her offering her help in any way she could. She has continued to be there throughout Austin’s journey still. From the meals she served to the families at Aflac, to the gift cards for food and gas which helped us so much for the many trips to Atlanta we had to make. We will always be thankful to Barbara Riley and her foundation for everything they have done for Austin and our family throughout this cancer journey.

Today, Austin is doing well and continues to get stronger each day. This cancer journey has not been easy and Austin still has a long road to a complete recovery. Austin was a picture of health before he got cancer, so cancer does not discriminate. Our family continues to heal after what this cancer did to Austin and how it changed his life at such a young age. We have taken this journey one day at a time since the beginning and will continue to as each day is always different. Austin just turned 18 years old on July 28th. He is looking forward to going back to school this fall where he will be a senior in the Class of 2017.