The Parkway Run & Walk is so much more than just a 5K run/2K walk. It’s about a community coming together with one goal: to create a future without pediatric cancer. Although we won’t be gathering with our friends and family on the Parkway, we’ll still be raising funds to find a cure.
Join us today — because a future without cancer begins with us!
Why This Is So Important to Our Team:
Rosie McKenna patient story
Atypical Teratoid Rhabdoid Tumor: Rosie’s Story
The first sign that something was wrong with Rosie came in July 2019 when the family
was on vacation at the New Jersey shore: Her head was turned a bit to the right. This was
the beginning of a harrowing journey that involved brain surgery before Rosie even
turned 1 year old. And yet the 22-month-old remains happy and spunky. “I feel like no
words actually do her enough justice,” says her mother, Julia.
When Rosie’s head-turning persisted for a few days, her parents took her to her
Children's Hospital of Philadelphia’s (CHOP) Care Network pediatrician near their home
in Springfield, Pa., who thought several tests were warranted. With appointments set up
within the next week or two for a vision check, a physical therapy evaluation and a
neurology evaluation, the family headed back to the shore — but then Rosie began
exhibiting other symptoms: She became irritable and started vomiting. This called for an
immediate trip to CHOP’s Emergency Department.
Doctors performed a CT scan that revealed the alarming reality: Rosie had a mass on her
brain, located in a small space in the skull near her brainstem. After being admitted to the
Pediatric Intensive Care Unit, Rosie underwent an extensive surgery by Dr. Phillip “Jay”
Storm, MD, Chief of the Division of Neurosurgery, to remove as much of the tumor as
possible. The diagnosis was atypical teratoid rhabdoid tumor (ATRT), a rare and fast-
growing cancerous tumor most often seen in children age 3 or younger. Soon after
surgery, Rosie’s parents met with Jane Minturn, MD, PhD, and the Neuro-Oncology team
to learn about the diagnosis and discuss the intensive 18-months-long treatment regimen
that Rosie would have to endure.
A first birthday at home
After the surgery, Rosie generally did well, but due to the tumor’s location, she had some
vocal cord paralysis and couldn’t eat by mouth. Rosie remained in the hospital for two
weeks but was able to go home for a few days to celebrate a big event: her first birthday.
The day after her birthday, she started six-months of an intensive, mostly chemotherapy
treatment plan, which required her to spend the majority of that time as an inpatient on
the neuro-oncology unit. This happily ended just before the Christmas holidays. The new
year brought a new phase of treatment: 30 sessions of proton radiation and daily
chemotherapy, which for a child so young requires general anesthesia. “For the six
weeks, Rosie woke up after each fraction of radiation happy and snuggling her favorite
nurses,” says Julia.
Lighting up a room
Currently in the midst of 12 months of maintenance chemotherapy, Rosie remains, in
Julia’s assessment, remarkable and strong. “I don’t think I can put into words how Rosie
has dealt with treatment,” says Julia. “She has a way of making everyone in the room
smile, even when she is feeling her worst. I say all the time: I am so lucky, because I
witness her time after time change the day a person is having. There have been so many
people who have visited her or hospital staff who take care of her say, ‘Well, she just
made my day.’”
Despite how Rosie radiates joy, her family has been transformed: “The day that you are
told your child has cancer, especially a cancer with less than great odds of survival, your
life is no longer the same,” says Julia. “Your heart is broken and you feel constant worry.
But life is also put into a different perspective — a world where now you see good in
every situation, where you see love from strangers and hope from a community around
you.” The family is endlessly grateful for their CHOP team. “Every time I left Rosie for a
surgery, a radiology scan or for radiation, the nurses said, ‘We will take good care of
her,’” says Julia. “And that made all the difference to me.”
Cancer Doesn't Stop, And Neither Will We:The world slowed down, but parents were still hearing the words “your child has cancer.”
Childhood Cancer Cures Begin at CHOP: U.S. News & World Report ranks CHOP’s Cancer Center as the #1 pediatric oncology program in the nation. Every day, CHOP’s Cancer Center team is redefining what a cancer diagnosis means for a child. The center offers the most advanced therapies available anywhere in the world, including cutting-edge clinical trials that reprogram the body’s own immune system to fight cancer.
How You Can Help
Make an Immediate Impact Today:100% of every donation to the 2020 Parkway Run & Walk: Virtual Edition, presented by Citadel, will help CHOP make important breakthroughs in understanding the causes of childhood cancer, developing new treatments that will improve outcomes for children, and one day may lead to a cure for childhood cancer.