On January 9, 2013. Joey, just seven years old at the time, was diagnosed with medulloblastoma, an aggressive pediatric brain cancer. Five days later, our beautiful boy had surgery to remove the large tumor from the base of his brain on the brain stem. When he awoke, he could not walk and had no use of his left arm. After days in ICU he was placed on an inpatient rehab floor for several weeks enduring eight hour days of grueling therapy to learn to walk again and regain the use of his left arm.
Three weeks post-surgery, his treatment including whole brain/spine radiation and high dose of chemotherapy, was to start immediately and he was quickly discharged and flown to St. Jude Children’s Research Hospital in Memphis, Tennessee. Due to the list of side effects that radiation would have on his young body, we were then re-directed to the University of Florida Proton Radiation Center in Jacksonville where Joey underwent 31 sessions of radiation. We then moved to Memphis for six months for chemotherapy. During Joey’s time in treatment, we often spoke of our future move to Portsmouth, NH (we had been living in Florida when Joey was diagnosed) playing baseball and snowy winters. Of course, not knowing if he would make it to that day was indescribably heartbreaking. By the end of our stay, my beautiful curly blonde blue eyed boy, was now bald, pale, 39 pounds and was so weak he could no longer walk on his own. Gia who was just four at the time, never left Joey’s side for a minute, she has always been his biggest supporter.
Six months after returning home from St. Jude we decided that a fresh start was in everyone’s best interest. We made the move to Portsmouth, NH. My husband, retired from the Miami Dade Police Dept., and I put my career as an attorney on hold to be involved with the children as much as possible.
Joey and Gia are now flourishing in their new school despite the unusual and extreme hardships they have been exposed to and have had to overcome at such young ages. They are both amazing kids.
Joey is smart, kind, funny, friendly and handsome. He understands that he has had a second chance at life and he has no intention of wasting it. He’s not angry about the cancer, in fact, he’s just the opposite. He’s appreciative that it introduced us to some amazing people along the way, now life long friends. He’s involved in baseball, soccer, Planet Rangers, Lego Robotics and attends Make-A-Wish and St Jude speaking engagements with me. He’s even raised money for Joe DiMaggio and St Jude.
We believe that you must look at all aspects of this journey in a positive light and use the experience to help others. We have since given back both financially and with our time to Joe DiMaggio Childrens Hospital, St Jude Childrens Research Hospital, and the Make A Wish Chapters in both Florida and New Hampshire…and now we look forward to including Rett’s Roost.
Families who have dealt with pediatric cancer share a special bond. We are part of a unique little club and all though we all have different stories and different outcomes, we understand each other. Though we may not have been through it together or at the same time, we know what it felt like when we were given our child’s diagnosis, what it was like to watch them go through radiation and chemotherapy. The beatings that the surgeries and medications did to their little bodies. The fear in their eyes every time they require a shot, blood work or IV. As parents, there is and will always be a constant fear that lies just below the surface. As for my family, for now, we are very content in our lives. It may sound strange, but cancer brought out the best in our family and we are better people for having gone through this experience and we are closer for having done it together.
Thank you to Deana and Jim, for sharing your love for Rett with us through your retreat. It was a wonderful experience for our family and we are thrilled we were at the first retreat to see you make your dream a reality.
For make a wish
For joe dimaggio childrens Hosp
For the police officers assistance trust fund: http://youtu.be/PyXC9XvaJRA you have to go to 2:40