How Dana-Farber gave my family hope
On November 29, 2011, cancer changed our lives. My son Richi was diagnosed in our home city of Barcelona with a high-risk medulloblastoma, one of the most aggressive brain tumors.
From that day on, we did not return home. We could never imagine what awaited us.
Richi endured a total of eight operations. He entered the operating room three times so surgeons could try to remove the tumor, which was larger than 5 centimeters in diameter and had lodged in his cerebellum. Then there were five more surgeries, in order to implant and stabilize a ventriculoperitoneal (VP) shunt.
Neurosurgeons were able to extract only 25 percent of the tumor. Oncologists then treated him with six weeks of radiotherapy. Unfortunately, Richi continued to get worse.
The next option was chemotherapy, but oncologists did not believe Richi could tolerate the treatments. We had little time, and our hope that our son could withstand the process began to diminish.
But my wife and I were not willing to give up. We desperately started searching online for the most advanced centers around the world specializing in the treatment of childhood brain tumors.
That was how we discovered Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and Mark Kieran, MD, PhD, director of Pediatric Medical Neuro-Oncology. Kieran immediately responded. He and his team were convinced Richi still had options. All of a sudden, hope returned.
A week later, on April 29, 2012, we landed in Boston. Meanwhile, our family and friends began a fundraising campaign in Spain to help finance the costs of treatment, as well as our stay in the United States. Ultimately, all this saved our son’s life.
Our new medical team, led by Kieran, achieved their task. The neurosurgeon, Lilliana Goumnerova, MD, is, from our standpoint, one of the best in the world. She not only managed to surgically remove the entire tumor without causing further damage, but also replaced the VP shunt with one that would be more secure.
Richi endured additional surgeries and chemotherapy and successfully completed treatment in November 2012. It was a miracle!
Richi is now a cancer survivor who will soon turn 11 years old.
We now live in Boston, close to the institution and people who gave us back hope, saved his life, and cared for his health. They helped us overcome many obstacles, including a long list of side effects with which we have learned to live.
Watching your child battle cancer is one of the scariest experiences that parents can endure. If your only option is to move urgently to another city or country – to be away from your home, your family, your friends, your work, and your life – then the situation becomes even more distressing and traumatic.
Nevertheless, we feel lucky. Richi is still with us as we continue to build with great effort and enthusiasm our new lives in the United States.
I’ve spent all my life undertaking projects, creating companies, and taking on challenges, but none as important and exciting as the one that led me to move heaven and earth to save my son’s life. It’s an experience that made me decide to spend the rest of my days helping the community of childhood cancer.
I now lead a foundation that fights against childhood cancer, and I am honored and proud to be part of the Pediatric Patient and Family Advisory Council at Dana-Farber.
Thank you to them, and to Mark Kieran and his team and the thousands of people, many of them anonymous, who in one way or another have contributed to allowing Richi to remain with us. You have helped us and other children with cancer have the opportunity for a better prognosis and quality of life.
Pediatric Patient and Family Advisory Council member