Melina Riniolo “Melina’s White Light”

Melina was a typical young girl just wanting to live an ordinary life. She didn’t want to be a rock star or an astronaut she just wanted to go to school with her friends. She wanted to have a part in the school play.  Sit in goal for her travel soccer team. Hop a on sled with her brothers, sister and cousins when the snow fell. She wanted to run and play outside in the sunshine. Ride her bike, put on a pair of rollerblades, spend a day shopping at the mall.  As she grew and fought cancer her plans grew to. Melina spoke of her dreams all the time…as if they were a year round Christmas List. Plans of starting high school with her friends, becoming the goalie for the freshman soccer team, going to college, getting married, having kids. Sitting around her kitchen table drinking coffee with her brothers, sister and cousins as their kids play in the living room. Just like she watched her mom and dad do. Melina’s Lists always had tons of movies to buy, places to go to, cozy cloths to find, chores to do and favorite foods to make and eat. She was a voracious list maker our Miss Melina. The one constant in all her lists and plans was that her family and friends were always included.  Cancer had different plans for Melina though. In December 2004 at 8 years old Melina was diagnosed with a tumor in her left adrenal gland. After a successful surgery the tumor was completely removed. Then we waited….malignant or benign…what would the pathology show. We were a nervous wreck…our whole family just sitting around holding our breaths. Then Malignant….was the word that shocked our hearts. Neuroblastoma…was the word that changed our lives forever. Melina’s life the most. For the first 3 years of Melina’s cancer life she was treated at Roswell Park Cancer Institute. The first year and a half she enjoyed normal cancer free life with routine scans and check ups. Then on her 10th birthday August 2006 Melina’s scans showed new disease. The beast neuroblastoma was back. We were all devasted. This time we knew things were going to get tough. We knew chemo was now in the plan. Which meant damaging her immune system, low blood counts, stress on her kidneys, no appetite, mouth sores and her beautiful black hair was going to go.   I’ll never forget the first time her hair began to fall out. It fell out quickly in random spots. At one point she couldn’t even look at herself in the mirror. She told me to just shave it off…..and I did. Each swipe my hand made with the clippers was so painful for her and me. When the last of her hair drifted away from her head I dropped my hand to my side and watched it fall. Then I let the clippers slip from my hand and hit the floor. My knees soon followed. Melina covered her face with her hands afraid to see her new reflection in the mirror and I wrapped all of her in my arms. I rocked her back and forth as we cried our hearts out. Not totally because Melina now had no hair but because deep down I think we knew life was never going to be the same. It was such a devasting momement for her…My heart seriously cracked that day.   After her six months of chemotherapy, two surgeries, 14 radiation treatments Melina was once again cancer free. In typical Melina fashion she jumped right into getting her life back and to enjoying her freedom from the beast Neuroblastoma.   Her new list: go back to school, beef up courage to deal with all the stares at her bald head, strengthen atrophied muscles, start house soccer, go camping with family, be patient for hair to grow back, stay out of hospitals… etc….  Melina was such a tough cookie and an independent thinker always insisting on being involved in discussions with all her doctors. Asking questions, negotiating with them…..letting them know what was on her mind.  In 2008 Melina relapsed again. We decided to try an immunotherapy study being offered at Sloan Kettering in NYC. Melina had one 3 month set of scans that were NED (no evidence of disease). Doing treatments away from home was stressful, expensive and depressing at times. Our family has always been our backup and to have to function without them was so hard. Especially for Melina who took such comfort and safety in the arms of her family. Being separated from her brothers and sister so often….. just stunk. She hated every minute away from them.  In January 2009 neuroblastoma reared its ugly head again and Melina never enjoyed another cancer free moment. But we never stopped fighting!  From there we found experimental studies being done in Vermont under Dr. Giselle Sholler at the Vermont Cancer Center. We felt so blessed to have found this doctor and this center. Dr. Sholler was researching in different angles then other neuroblastoma programs. We liked outside the box thinking and had a lot of faith in the direction she was working. Even though her program was young we knew if we could keep the neuroblastoma at bay something would click and Melina would be there to take advantage of it.  But…..that’s the trick…… keeping the neuroblastoma at bay. This monstrous disease has a mind of its own and follows no rules. It almost never acts the same in any two children. Its’ just a beast!  Melina’s disease started to explode when we found out that she had a unique gene mutation that Childrens Hospital of Philadelphia had a study running for. So in April 2010 Dr. Sholler made arrangements to get Melina enrolled into this study in hopes that this is what would work for Melina now.   Through all the ups and downs and changes Melina always stood strong. Did what she had to and never gave up. I used to feel so bad about all that she was missing out on. While all her friends were going to school, developing a social life, going to activity nights at school, dances, birthday parties. Melina was fighting for her life.  It wasn’t fair. But she didn’t think this way often. She told me once “ mama, I’m not sad….I’m happy… I wake up each morning and I live the life I got that day…..the best I can! I except my life and that I am sick, I’m good with God, I’m home with my brothers and sister, surrounded by my family, my favorite movies, my home…..throw in a steak hoagy and chicken wings and I’m all good.” Thirteen years old and she figured out the secret to a happy life. Go figure!!  Melina held onto that attitude till the end. She was such a unique individual with a definite sense of right and wrong full of love for her family. She was some much more than a neuroblastoma warrior she was an ultimate fighter. She taught some many of us so much in such a short time.  On June 3 at 4:53 am Melina took Jesus’ hand and was healed. With me lying in bed beside her, her daddy on the left of her and our entire family surrounding her ….completing her circle…..just as she like it.       Birthday: August 9, 1996   Died: June 3, 2010   How do you keep your child’s memory alive: I keep Melina’s memory alive in many ways and am finding new ideas all the time. We bought necklaces for our entire family that held a small portion of Melina’s ashes. Joe, myself and our kids wear a wooded heart filled with her ashes and inscribed ‘You’ll be in my heart’ on one side and her intial on the front. We also had a metal with her picture laser engraved on it that our children and Joe and I wear.   Melina loved to draw so we had the idea to have a table top easel made with a sealed box on the back that could hold her ashes. A wonderfully talented woodworker we were introduced to created the perfect resting place for our angel. The art work sitting on the easel is a picture Melina was working on but didn’t have the chance to finish. We thought it appropriate. An unfinished portrait for an unfinished life. There is also a small drawer below it for us to place special momentos and messages to her.   We plan to fill a wall in our living room with shelves to place her easel and many of Melina’s favorite things. Every week I place fresh flowers by her. she loved flowers in the house.   Pictures of her hand in every room of the house so she is always apart of what is going on in our home.   On our front lawn we have a blue spruce christmas tree that was given to us by family to plant for melina. Beside it we have a giant picture of her and the tree is covered in lights.   In our back yard I started a butterfly garden the week after Melina’s funeral. That is still a work in progress. I have many plans for it.