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The Mandell Family Turns Grief Into Action Following Toddler’s ATRT Diagnosis

Published on September 6, 2022 in Event Participant, Pediatric Brain Tumor, Fundraising, Stories

A toddler in a white shirt is held by her mom and dad in black.

A spring break trip to Savannah, Ga., to visit family abruptly changed when 15-month-old Emily suffered a massive seizure. Emily’s parents, Brian and Katie, rushed her to the local ER, where a CT scan found a large mass in the back of her brain. An MRI confirmed the tumor the following day.

“We were just completely shocked,” Brian said. “Once you get thrown into that situation, everything is new. The language is new and very technical. They went in to relieve pressure off her brainstem and, in the process, also took tumor samples. It was just a waiting game until we got the specific pathology where we tried to keep her as stable as possible.”

After three stressful weeks, Emily’s medical team diagnosed the toddler with an atypical teratoid rhabdoid tumor (ATRT). At the time, Brian recalls less than 30 kids being diagnosed with this tumor type each year, with a cure rate of less than 10%.

Emily’s Family Heads to Boston

After researching options, Emily’s family traveled to Boston to receive treatment at Boston Children’s Hospital. 

“You want people who have daily experience with this rare tumor who have come up with the protocol,” Brian explained. “Within a few hours of arriving, we knew we had made the best possible decision.”

Near the end of the family’s time in Boston, Emily was on a treatment that didn’t make her feel sick. 

“We would take her out in the stroller and go for walks to enjoy the scenery,” Katie shared. “We had some lovely times during that treatment. We felt very lucky because most babies with this tumor type don’t make it very long.”

Her treatment gave the family almost a full year with Emily — precious time together to create lasting memories before she passed away in March 2009.

“Today, scientists and oncologists like Dr. Mark Kieran and Dr. Susan Chi have made tremendous progress against ATRT,” Brian said. “Even though the outcome for younger children like Emily remains very low, they have improved. The cure rates are now close to 50%. We won’t stop until it’s 100%.”

Brian and Katie Start to Fundraise

With that focus in mind, Brian and Katie formed Team Emily’s Wish in 2009 to raise funds for brain tumor research while participating in Race for Hope-DC.

Team Emily’s Wish at the 2022 Race for Hope-DC

“We were debating about team names,” Brian said. “We honed in on Team Emily’s Wish because it was our wish for her and all kids to be cancer free and live a normal life.”

Emily’s family and friends sport green team shirts — Emily’s go-to color in honor of her favorite character Shrek — at the annual event. In May 2022, the team raised more than $4,600 to drive best-in-class medical research forward. 

“It’s isolating losing a child, so doing the brain tumor walk for me is always just a nice time for people to come together,” Katie said. “I don’t feel so isolated. The Wall of Hope — a 32-foot-long tribute to the loved ones we participate on behalf of on event day — is really special for us. We always include Emily up there, and that’s a nice tribute.”

Events like Race for Hope-DC bring the brain tumor community together to honor, learn, develop meaningful relationships, turn grief into action, and fuel momentum for the cause.

“Once you get the diagnosis, recognize that you’re not alone and start reaching out,” Brian said. “The network was just invaluable to us following Emily’s diagnosis.”

Childhood Cancer Awareness Month

This September, Childhood Cancer Awareness Month (CCAM) is a time to recognize, advocate for, and honor children who have been affected by cancer and the families that care for them.

“For me, it’s important to help families like us who are thrown into the deep end of this pool,” Katie said. “Having that awareness and sharing what signs to look for to get the earliest treatment is all important.”

Your support today is critical to ensuring the urgent, unmet needs of the pediatric brain tumor community continue to be heard and addressed. When you make a one-time or sustaining gift to NBTS, you have an immediate impact on the important work underway to find a cure and ensure a better quality of life for children living with brain tumors.

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