Fionn Mulrooney, a cheerful 11-month-old, in Plymouth, Massachusetts, has no idea he has a life-threatening genetic disease. Nor does he seem fazed by the daily subcutaneous injections his parents have learned how to give him. And little does he know that cells from his bone marrow are helping scientists develop an innovative gene-editing approach that … Read more
When Samantha Price’s four-year-old daughter, Shelby, was diagnosed with acute lymphoblastic leukemia (T-ALL) in October 2019, Price had so many questions about what the future held for both of them. What would the highs and lows of treatment look and feel like for Shelby, and how could she best care for her daughter throughout the … Read more
Call it mother’s intuition, but leading up to her daughter’s cancer diagnosis, Erica Jensen knew something wasn’t right. At just 10 months, Charlee had started walking, and since taking her first steps the excited toddler was constantly exploring the world around her. Then, at around 15 months, something changed. It wasn’t obvious at first — … Read more
Erica Domeier thought she would be preparing for her upcoming graduation and making plans for her final summer before college in June 2014. Instead, the 17-year-old was in the hospital, having recently been diagnosed with brain cancer. It was the beginning of what would be a difficult road for Domeier. But today, because of her … Read more
For almost half of his life, Michael Murray has had to grapple with cancer, including multiple relapses. One of his hardest setbacks was hearing that his cancer had returned just weeks before he was set to start his freshman year at Boston College. With the news, Murray worried that his future would be in jeopardy. … Read more
At just 18 years old, Gabbi Stewart is a two-time survivor of two very different types of cancer. While her care team acted quickly to aggressively treat her most recent cancer, Stewart was faced with what she says was her greatest challenge: building back up the self-confidence the disease had eroded. A rare diagnosis In … Read more
This post originally appeared on Thriving, Boston Children’s Hospital’s pediatric health blog. On a hot, August day in a Boston park, Jesus Apolinaris Cruz cooled off with a water squirt gun fight with his mother and sister. As he nimbly ran and dodged their aim, he twisted around to sneak shots of water back in their … Read more
Harry Clark has faced many academic challenges in his dozen years of brain cancer treatment, but through surgeries, radiation, and chemotherapy, one person has always been there to guide and reassure the high school junior and his family on scholastic matters. School psychologist Marybeth Morris, EdM, is one half of a dynamic duo supporting pediatric … Read more
Like many of Dana-Farber’s youngest patients, 3-year-old Hannah Packman brought a favorite plaything to each of her Jimmy Fund Clinic visits. Lulu the doll, however, was unique because of the extra attention she received from pediatric social worker Deborah Berk, LICSW. When Hannah had a blood draw, Berk arranged for Lulu to have one as … Read more
In their Brookline home-far-away-from-home, 2-year-old Duy Anh “Harry” Le plays with blocks and pop-up toys on the floor with his mother, Thao Nguyen. He is lively and happy, and his skin is clear. He looks almost nothing like the sickly baby covered in eczema who arrived in Boston from his native Vietnam in November 2016 … Read more
There is no greater pain than losing one’s child, but Jessica Horak Stout has derived something positive from her son Ryland’s passing – a teaching moment for medical experts on what it’s like to grieve through a parent’s eyes. Horak Stout co-wrote a book with her father Walter Horak that details the year that Ryland … Read more
Tracy Antonelli was four when she was diagnosed with thalassemia, a rare blood disorder that occurs often enough in Mediterranean countries like Italy that an old adage, uttered only partially in jest, warns Italian-Americans against marrying other Italian-Americans. In 2002, a grown-up Antonelli wed Patrick Mooty, whose background is mostly Irish. Their three daughters – … Read more
This story first appeared on Vector, a blog of Boston Children’s Hospital. “It’s a brutal disease; there’s just no other way to describe DIPG,” says Steve Czech. “And what’s crazy is that there aren’t many treatment options because it’s such a rare, orphan disease.” Czech’s son, Mikey, was diagnosed with a diffuse intrinsic pontine glioma … Read more
For much of his 17 years, Spencer Riley has lived to play basketball. This winter, his favorite sport helped the teenager get back to life. Riley was diagnosed with non-Hodgkin lymphoma in 2016 and treated at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center that summer. He underwent an intensive three-month treatment cycle: one week of … Read more
By Ebony Glass One day, our 2-year-old son Javon complained about a bit of pain at daycare. It seemed harmless enough. But after a visit to the pediatrician, we ended up in the hospital for emergency surgery. There, they discovered that a mass in his body was causing the pain. “Cancer?” we feared, but it was … Read more
As told to Sue Morris, PsyD As director of Dana-Farber’s Bereavement Program, I regularly sit with bereaved individuals, listen to their stories, and help them navigate their lives after they have been completely turned upside down. I recently spoke with three bereaved parents who are members of Dana-Farber’s Pediatric Patient and Family Advisory Committee (PFAC), … Read more
Happy to have given birth in January 2015 to two seemingly healthy boys, Levi and Colton, after an uneventful pregnancy, Kala Looks gave little thought to the routine heel prick of newborn screening. At 23 and 24, she and her husband, Phillip, were high school sweethearts starting a family with a pair of fraternal twins. … Read more
By Dana Mendes Like many high school students, I was eager to start a new chapter of my life after graduating in 2015. I had committed to play field hockey at Assumption College in Worcester, Massachusetts, that fall, and spent the summer working out alongside my new teammates – determined to prove myself on the … Read more
At first, early intervention specialists told Christi Powers that her young son’s gross motor delays and poor balance were likely the result of weak muscle tone, but when Danny developed severe headaches at age 4, she took him to the emergency room. Soon the suburban Boston boy was diagnosed with a low-grade glioma, the most … Read more
After Lacey Martin’s leukemia didn’t respond to initial rounds of chemotherapy and after she spent 10 weeks hospitalized for a stem cell transplant, the 11-year-old New Hampshire girl went home March 2 with an external line for medications that her mother would have to flush and clean twice a day. Lacey’s immune system and infection-fighting … Read more