The Riley Rejniak Family
The Riley Rejniak Family Story

Riley’s journey started in March of 2017. He had an oral surgery in which steroids were used. The next morning, he was in so much pain that we had rushed him to the doctor where they did a bunch of tests and ultimately could not figure out what was wrong. They told us to follow up in a few weeks with his pediatrician. My wife Ashley took Riley early in the morning for the repeat blood work, and no sooner than I had walked through the door from work, I had a call from Ashley. She told me that she was on the way to pick me up. His pediatrician had called her and said that she noticed something wrong with Riley's blood, and that we should go right back to the hospital. She had already called and told the hospital that we were on the way.

So, the waiting started. We had no idea what was going on and no one could tell us either. Finally, after many, many hours in one of the patient rooms of the emergency department, they told us that we needed to speak with a hematologist, and we were waiting for an ambulance to transfer us to Hershey. We reached Hershey around one in the morning and had so many questions. The next day they had moved us to The Hematology/Oncology floor, and on April 25th, 2017, our beautiful, sweet Riley was diagnosed with Stage 4 neuroblastoma, a very aggressive cancerous tumor and was also present in his bone marrow.

Riley battled hard for a year and a half which consisted of four biopsies, six cycles of chemotherapy, surgery to remove the tumor, a stem cell transplant, 12 rounds of radiation, and five cycles of immunotherapy. Not to mention gallons of medicine, weekly dressing changes to keep his port free of infection, a tube in his chest, and a night in the ICU due to excess fluid. Countless shots, numerous catheters, a blood clot in heart, and getting VOD which is a serious complication involving his liver from the stem cell transplant. His total in-patient bill at this point was $2,183,515. We ended 2018 on the highest note possible with a surgery to remove his port because as of July 30th, 2018, Riley was declared in remission. During this wonderful time, we filled it with the most fun our family could have. Riley enjoyed kindergarten, we attended THON, had an unforgettable Make a Wish trip to Disney World, beaches, pools, family reunions, boating, jet skis, and the list could definitely go on.

On July 18, 2019, our family was looking forward to sharing that Riley was one year in remission, but unfortunately his scans showed some tiny lesions. They were too tiny to biopsy (which would have given us our definitive answer). Riley was beginning to relapse. It was insane to us because he showed no physical signs and was having the best summer of his life. Seven weeks later we were at Hershey Park when Riley had severe pain in his legs and stomach. The next few days showed that his lesions had metastasized to his thighs, hips, pelvis, up his spine, and into his arms. Riley started another year long relapse chemotherapy which brought Riley’s total stay to 230 nights in the hospital and 18 rounds of chemotherapy. This brought his total in-patient bill to $2.5 million.

June 3, 2020, we were relieved to announce that Riley had ended his treatment, because his scans had shown no evidence of disease. We had a pretty calm year during COVID, which we were thankful for instead of the alternative. July of 2021, Riley had scans to show he would have been a year with no evidence of disease. Unfortunately, the scans have shown that Riley’s cancer is back. Our family was again devastated as we started treatment for the third time. But, Riley, like usual, said a line that has become his motto: “I’m not worried about it.” Looking forward, we have an unclear and unsure path.

THON (especially Berks Benefitting THON) has been incredible to our family. They have helped with events that were thrown for our family, and they came to sporting events to show support for Riley’s brother Greyson. They call and text us periodically to keep tabs on us, but also to keep us in the loop with what's going on in the Org. If there is any advice I would give to any families starting this journey, it would be: do not stop taking pictures and making memories. Take the time off of work. You have the rest of your lives to make money. Go have fun and do what makes your family happy. Do not be afraid to accept help. People will do incredible things out of the kindness of their hearts, because they want to. So LET THEM. Always remember: your family is not alone in this journey. We all become part of this amazing community that no one asks to join. “We became family, when our kids were diagnosed with cancer”.

Currently Riley has completed two more rounds of chemotherapy bringing his total to 20 rounds of chemotherapy with 241 nights spent in the hospital. He has more scans on August 31-September1. These scans will determine if we move to treatment every four weeks or continue with every three weeks. Please continue to pray for our warrior, and if you would like to follow his story, we post regularly on Facebook at RallyforRiley.