Through a memoir of her experience as the mother of a child with cancer, Jodi Sampson is working to fund advances in pediatric cancer research at MGH.

When a child is diagnosed with pediatric cancer, it affects the whole family. Physicians and caregivers at Mass General Hospital work to ensure that each child and their family receive the highest level of comprehensive and personalized care during these difficult times, and aspire to improve the care and quality of life for children living with malignant diseases. Moved by her experiences as the mother of a child receiving treatment for a pediatric brain tumor at Mass General Hospital, Jodi Sampson committed to sharing her family’s story in her book, The Face of a Miracle. By donating the proceeds from the sales of the book to researchers at the MassGeneral Hospital for Children, she hopes to support the family centered care and innovative research for which Mass General is known.

The Face of a Miracle
The Face of a Miracle

Jodi began to suspect that something was wrong with her two-year-old son, Michael, in April of 1998. He just hadn’t been able to shake the virus that had run its course through the rest of the family, and his lack of appetite and constant lethargy became a cause for concern. After countless visits to different doctors, emergency rooms and specialists, Jodi took Michael to Mass General at the referral of his gastrointestinal doctor in Salem.

“We figured we’d go down to see the specialist and be home by the weekend,” Jodi says. After running through another extensive round of tests, a cat scan revealed an aggressive tumor in the right occipital side of his brain. Michael was given six months to live.

Doctors at MGHfC put Michael on an intensive course of treatment, including a stem cell transplant and five years of chemotherapy. Michael continued to experience complications even as these advanced treatment options extended his life expectancy. Fluid build up in Michael’s brain, caused by a seizure during the stem cell transplant, required the placement of three shunts in Michael’s brain. He has since endured over 25 surgeries to maintain the shunts.

A Personal Journal Becomes a Resource

Like many of the families at MGHfC, the hospital became a second home to Jodi and Michael. During long hours over years of therapy and treatment, Jodi waited by Michael’s side, watching over his emotional and spiritual health as caregivers worked to make him well. Today, Michael is a happy and healthy 16-year-old who balances his schoolwork with a part-time job at the town grocery store and his volunteer duties at the local animal shelter.

The Sampsons consider themselves fortunate to have had the support of family, friends, and the staff at Mass General during their time in treatment. Jodi has warm memories of Marilyn, the floor’s child-life specialist who would come to play with Michael and put him at ease. Michael’s oncologist, David Ebb, MD, became a resource for everything to Jodi and Michael. To this day he remains a close friend of the family.

Still, Jodi often found herself alone with her thoughts. The family was dealt another blow when Jodi herself was diagnosed with breast cancer in 2006 and again in 2012.

“An experience like this tests everything about yourself,” Jodi says. “It changes everything in your life. It changes the plan. I realized I needed to take care of myself, to keep myself motivated and stay positive to help him.”

“An experience like this tests everything about yourself,” Jodi says. “It changes everything in your life. It changes the plan. I realized I needed to take care of myself, to keep myself motivated and stay positive to help him.”

To pass time and to ease her fears during Michael’s treatment, Jodi took to her journal, writing down all of her thoughts, prayers and questions. As Jodi continued to write, she realized the potential to use her experience as both a resource for families going through the same challenges and a way to give back to the Pediatric Brain Tumor Clinic at MGHfC.

This past January Jodi published The Face of a Miracle. All of the proceeds from The Face of a Miracle go towards supporting the research of David Sweetser, MD, chief of the Medical Genetics Program at MGHfC, as he works to identify targeted therapies to treat pediatric brain tumors. Currently, Dr. Sweetser is examining the potential to utilize gatekeeper proteins, or proteins that prevent cancer cell growth, to repress the Myc gene, which has been linked to the development of leukemia and aggressive types of brain tumors. In a separate research initiative, Dr. Sweeter and his team are investigating the potential existence of predisposing genetic mutations in children with certain types of brain tumors. Identifying such mutations would allow for the creation of tailored therapies and screening processes to assist with early detection of brain tumors.

“We need to look for therapies that are more effective and less harmful,” Jodi says, “so that children like Michael experience a better quality of life.”

In partnering with Dr. Sweetser, Jodi hopes to help other children undergoing treatment for pediatric cancer and give back to the physicians who helped her family during their struggle, enabling doctors to treat more patients with the very best therapies available today.

To learn more about Jodi Sampson and The Face of a Miracle, please visit faceofamiracle.com