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.

Thank you for your support!

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