Riley M, Liver Recipient

Riley was born on April 22, 2007, a healthy 9 lb 2 oz bundle of joy. Her first year of life was uneventful. We battled the common infant illnesses – ear infections, common cold, and teething! We learned to deal with her not sleeping for more than thirty minutes at a time. Developmentally, she was right on target. It wasn’t until September of 2008 when things got incredibly complicated. She was 17 months old and had just headed back to daycare after being home with me all summer. Sharon (our daycare provider), had pointed out a bulge on her belly. I had not felt it before but knew it required a trip to the doctor. On Friday, September 5, 2008 we headed to her pediatrician’s office; the look on his face said it all, “this may not be good.” We were admitted to HASBRO Children’s Hospital that same night and after numerous blood tests, XRAYS, ultrasounds, and a CT scan we had a diagnosis – Hepatoblastoma, a very rare liver cancer that affects 1 in a million children. It was then that our lives changed forever; we entered a whole new world, a world no parent ever wants to be in. A biopsy revealed that although the tumor was giant - consuming most of her liver, it was contained just there. There was no evidence of tumor anywhere else in her body. For the next four months our lives revolved around inpatient chemotherapy treatments, blood tests and scans. Riley lost all of her hair and quite a bit of weight. However, she never lost her good nature and embraced each and every experience. She stole the hearts of every nurse and doctor with whom she came in contact. Being in the hospital became her “playground.” After four rounds of chemotherapy her scan revealed that the tumor had shrunk but in the wrong direction. It was small enough to be resected, but because it was sitting on a major vein, doctors were not comfortable that they would be 100% successful in their attempt to get it all. It was at this point that she was sent to Boston Children’s Hospital for a liver transplant consultation. Another unknown for us, but with the help of some of the best doctors and nurses we managed. It was determined that Riley had the best chance of ridding her body from cancer by undergoing a liver transplant. Because of her age and diagnosis she was placed on the top of the waiting list. We literally jumped every time the phone rang. In less than a month, we received “the call.” Riley received her life saving liver transplant on December 5, 2008 – three months to the day of her diagnosis! Riley had numerous complications after her transplant. One required another surgery three days after her transplant and we traveled to Children’s Hospital every eight weeks or so for procedures to monitor a stent that had been placed to widen her hepatic artery. Four years later, I am happy to report that Riley is a thriving 5 year old. She started kindergarten this year, enjoys her dance and gymnastics class, adores her little sister, and believe it or not, still loves going to the doctor! When asked what she wants to be when she grows up, she enthusiastically replies, “a nurse!” Although the road of chemotherapy and transplant has been scary and uncertain, it has given us a chance to meet fabulous people and learn to live life to the fullest. Riley’s donor family has given us hope and I will continue to share Riley’s story for the over 114,000 Americans currently waiting a lifesaving organ transplant. You can be hope too by registering to be an organ and tissue donor atwww.donatelifenewengland.org