September is Childhood Cancer Awareness month, and for the Schultz family, it was the first September since losing 9-year-old Annalise in February.
The pain is still fresh for Chad; Jennifer; and their son, Sebastian, but Annalise’s family is eager to turn its grief into action. Annalise’s father, Chad, said the family has donated his daughter’s brain tissue to science. They are also participating in the Children’s Hospital of Philadelphia’s (CHOP) Parkway Run and are eager to share Annalise’s story with others.
The family was vacationing in Avalon in June of 2019 when Annalise became so ill with stomach upset she was rushed to the emergency room. Doctors suspected her symptoms were probably the byproduct of a virus, and when her blood work showed nothing out of the ordinary, she was sent home.
But Annalise didn’t improve. She became increasingly lethargic, to the point where she was going in and out of consciousness. A subsequent biopsy of her intestines revealed she had Celiac Disease, and doctors mistakenly assumed that was the source of her issues. But a week later, she developed left-side weakness, her smile went crooked and the family rushed her to the emergency room once more.
After an array of tests, Chad and Jennifer received the news no parent ever wants to hear: Annalise had a brain tumor. It was on her thalamus, rendering it inoperable. The thalamus acts as the relay center for sensory information related to consciousness, movement, sleep and other functions. So, doctors couldn’t treat Annalise with chemotherapy either.
A biopsy revealed the tumor was Diffuse Midline Glioma (DMG), with Histone Mutant H3 k27m, a rare and aggressive form of cancer. DMG most typically occurs in children between the ages of 5 and 11.
Doctors at CHOP told the Schultzes the only treatment option at their disposal was radiation, which might give Annalise another one or two years. But the medium life expectancy for her diagnosis was about nine months.
At one point, Annalise went through what doctors call a “rainbow period,” where the radiation worked and she started to feel better. Chad said the family was hopeful she’d keep getting better. They took a Make-A-Wish trip to Disney World and made the most of the precious few weeks of relief Annalise had. But around the six-week mark, she started to feel ill again.
Chad said Annalise showed up to each of her treatments without complaint and almost never cried, with the exception of blood work because she didn’t like getting pricked. Along the way, the Moorestown community rallied around the family and showed its support wherever and however it could.
Annalise loved going to school and wanted more than anything to attend her first day of fourth grade at the Upper Elementary School. While she was still undergoing rehabilitation and too sick to attend full time, the school brought her in for her first day so she wouldn’t miss out.
“Everyone tried to lift her up and people lifted us up as a family,” Chad said.
The disease impaired Annalise’s ability to walk and affected her working memory. She couldn’t remember conversations or things that happened day to day, so staff at CHOP gave her a journal to help keep track. Chad suggested they take her journey and put it online. What started as a blog to help Annalise remember what she’d gone through has since become a memory book dedicated to her.
After her passing, Chad worked to develop the book into a memorial-style website that would not only honor Annalise’s legacy, but would be a place to help him heal. The site shares information about Annalise’s story and donations to DMG research and chronicles Chad’s personal journey through grief and healing on a blog section of the site.
Before her passing, Annalise was on a clinical trial of medication for about two months, but seven months into battling the disease, she experienced a brain bleed. She lost her balance, her eyesight and her ability to swallow, and on Feb. 26, the disease took her ability to breathe.
The family donated Annalise’s brain tissue to the Children’s Brain Tumor Tissue Consortium at CHOP. Chad said it was the best way to continue his daughter’s fight and help other kids with the same diagnosis.
The family continues to try to give back where and how it can. Chad’s Amazing Annalise website links directly to CHOP’s Division of Neurosurgery and Pediatric Brain Tumor Research. The Schultzes are also participating in this year’s CHOP Parkway Run, currently a virtual event. Thus far, they have raised about $15,000.
Chad is also working on a personal project — a podcast to memorialize Annalise he plans to call Sign Seer. The series will explore the concept of signs from the afterlife. Since Annalise’s passing, Chad has experienced moments that have made him wonder if his daughter is still reaching out to the family in some way.
“I am conflicted at times, whether this is real or some philosophy broken people come up with,” he said. “I don’t know.”
Chad is not certain when, or even if, he’ll release the podcast for general consumption, but he said the process has brought him some comfort as he listens to recordings of his daughter and interviews various experts to discern whether he and others who have experienced loss are receiving signs.
The family’s biggest hope is to become an advocate for research on DMG. Chad stressed federal funding on the disease is vastly limited, and the Schultzes hope changes come soon.
“Annalise, we just try to honor her every day and honor her by helping other kids; that’s what we’re trying to do,” Chad noted.