Patient StoryMar | 12 | 2018
Saving Sophia and Supporting Others
On April 16, 2018, 102 runners will participate in the 122nd Boston Marathon on behalf of MassGeneral Hospital for Children (MGHfC). These individuals support clinical and lab research, Brain Tumor and Long-term survivor programs, child life programs and mental health services that enhance the quality of life for the hospital’s youngest cancer patients. This year marks the 21st anniversary of John Hancock’s partnership with the Mass General Marathon Program, providing Mass General with 100 bib numbers for the race, allowing the hospital to raise more than $13 million.
Alyssa and Rich Maglione knew they needed state-of-the art cancer care when their daughter, Sophia, was diagnosed with medulloblastoma, a fast-growing brain and spinal cord tumor. The family transferred Sophia’s care from a New York-based hospital to the MGfC Cancer Center where she has undergone proton and chemotherapy to curb the cancer’s growth. Alyssa, Rich and Sophia are working hard to live every day to the fullest, now understanding how precious life is.
What inspired you to join the 2018 Mass General Marathon Team for Pediatric Hematology Oncology?
Our daughter, Sophia, has had brain cancer twice in her short 10 years of life. Sophia was originally diagnosed in 2010 and then relapsed in 2016. Doctors explained that Sophia’s best chance of survival was therapy through the MGH Francis H. Burr Proton Beam Therapy Center. We packed up our lives in New York and immediately came to Massachusetts for radiation. During the 6 weeks of treatment, we became incredibly comfortable and trusting of our MGfC Cancer Center oncology team and decided to stay for Sophia’s chemotherapy treatment. As a family familiar with the hospital environment, clinics and doctors, we had never encountered such an amazing, trustworthy, caring group of individuals like at MGH. The clinic is unlike any other place we’ve ever received care. Everyone from the doctors to the child life specialists to the coordinators make you feel like family. The level of care is unprecedented and there is not a shadow of a doubt in our minds that the team at MGH saved Sophia’s life.
Alyssa ran the Boston Marathon in 2016, two months after Sophia was diagnosed with relapse medulloblastoma. She ran for another area hospital and didn’t think she’d run another marathon. But when our family found out about MGH’s pediatric oncology team, there was no question we’d be running the 2017 marathon.
There is no way to express our gratitude and endless appreciation for all Sophia’s doctors, nurses, therapists and everyone at the clinic. Running the marathon and raising funds for the clinic helps us give back to the place we credit with saving all of us. The clinic became our second home and the people there became family. The work done behind those doors is nothing short of miraculous and we want to do anything we can to give back.
Is this your first marathon?
Nope! This is Alyssa’s fourth marathon. She ran the New York City marathon in 2014 and then the Boston Marathon in 2016 and 2017. Rich ran the Boston Marathon last year as well.
What will you be thinking about on race day?
There are so many things that go through your head during a marathon. The pain you’re feeling, the exhaustion, the exhilaration, the excitement; it’s an emotional day. When you have gone through what our family has experienced, it’s more than that. We often compare what we’ve been through to a marathon because fighting cancer is a marathon, not a sprint. Nothing is more painful than watching your child battle for her life so when we get out there on the course on April 16th and things are getting tough and the pain is setting in, we think of Sophia and her positivity despite her pain. We think of how hard fighting Sophia’s relapse was and realize that running hundreds of miles is nothing compared to what we’ve endured as a family.
A cancer diagnosis is earth-shattering. Life as you knew it stops and you start in a new world where you don’t want to be living, but are forced to. We fought harder than many can imagine and running became an outlet during the hardest of times. On race day, memories of the many treatment days that we cried through, we pushed through, make us realize that no matter how hard the climb, we always make it to the top.
What are some lessons you’ve learned from your daughter affected by cancer and from training for the marathon?
We can confidently say that despite all the years of school we’ve been through and all our years in the career world, we have most definitely learned more from watching Sophia live. We’ve watched Sophia fight through excruciating pain without shedding a tear. We’ve watched her struggle with anxiety about radiation treatment, and despite 45-minute-long panic attacks, she would take a deep breath, lay perfectly still and complete her treatment every single day for six weeks. We’ve watched her get poked and prodded no matter how much she didn’t want to, get chemotherapy pumped through her veins, making her feel sick yet still play games and laugh. We have watched her be terrified of so many things related to her treatment, but still find it in her to do what she had to do to get better. Sophia is our hero. She is the strongest, most amazing person we will ever know. She’s the truest example of what a fighter, a survivor and a warrior is.
We’ve trained for the marathon during Sophia’s treatment and out of treatment. In both situations, training has been so difficult. Injuries have plagued us and exhaustion is an understatement. Training for a marathon is hard. At the end of the day though, nothing can be harder than 2016 and 2017 were for us. Nothing. We always think about what we, as a little family, have already conquered and continue to battle. All the aches and pains fade and we remember why we are doing this.
We do this for Sophia and for all the warriors and their families we’ve met during our journey. We do this to prove to ourselves that this family has no limits. We can do absolutely anything we set our minds to. Anything.
This story is part of a series that MGH will publish in advance of the 2018 Boston Marathon featuring the Pediatric Oncology and Emergency Response Teams. In addition, individuals will run for the Miles for Mass General Program, which raises funds for hospital programs that are close to their hearts – including Botswana Oncology Global Outreach, Caring for a Cure, Cystic Fibrosis, Down Syndrome and the Lurie Center for Autism.