She beat cancer at Mayo Clinic. Now, she's raising funds to help others

ROCHESTER — Emma Hull visualizes her life in two parts: before cancer and after cancer.

The Rochester native was diagnosed with stage 2 Burkitt lymphoma, a type of non-Hodgkin lymphoma, on Halloween 2018. She was 16, in the middle of her sophomore year at John Marshall High School.

"I had a chronic stuffy nose, and so when I went in for that, just to my primary care provider, I was prescribed Flonase because we just thought it was allergies," Emma said. "But then within that week, I started getting really heavy bloody noses — they would just bleed for a really long time."

After several repeat visits to the emergency department for her nosebleeds, Emma underwent surgery to have the bleeding site cauterized. During that surgery, her Mayo Clinic providers found that Emma had enlarged adenoids — soft tissues that sit at the top of the throat behind the nose. They removed her adenoids and sent them to pathology. That's how they found Emma's cancer.

"We scheduled an appointment for Wednesday, which was October 31, Halloween," Emma said. "And that's when they diagnosed me with Burkitt lymphoma."

This set Emma on her treatment journey, which included several weeks of chemotherapy.

Now in remission and in college, Emma is collaborating with one of her fellow lymphoma survivors to raise funds for the Leukemia & Lymphoma Society.

Just a week after her diagnosis, Emma underwent the first step in her cancer treatment: a surgery to place a chest port and do a lumbar puncture.

"The lumbar puncture, that was to check the spinal fluid for cancer and then also to inject the first dose of intrathecal chemo," Emma said.

Emma's newly installed port, positioned on the right side of her chest, was used throughout her treatment to draw blood samples and deliver chemotherapy and blood transfusions directly into a vein near her heart.

"That was to reduce the amount of pokes and IVs and stuff that I would have needed to get," she said.

Contributed / Amy Hull

And she would need a few. After the surgery, Emma spent November, December and the first half of January receiving four rounds chemotherapy treatments at Mayo Clinic.

"She'd be inpatient for about five days, and she'd be receiving chemo daily for five days," said Amy Hull, Emma's mother. "And then she'd be off for two weeks."

Emma and her family knew early on that the chemotherapy was effective. Amy remembers the differences between Emma's first scan, taken before treatment, and her second scan, taken after her first full round of chemotherapy.

"It was almost gone already," Amy said. "It just melts away, they said. There was very little left, so then she had three more rounds of chemo after that to make sure that everything was gone."

On Jan. 13, 2019, Emma had her last chemotherapy treatment. Since then, she's been cancer-free.

Three months of chemotherapy — and the weakened immune system that often comes with that treatment — meant Emma missed a quarter of her sophomore year at John Marshall. The school made accommodations to keep Emma on track with her education.

"The plan we had come up with my counselor was I wouldn't be making up any of the work as long as, when I came back, if I could keep up my grades, I think, at a B or an A," Emma said. "But then there was my health class, ironically, I had to end up making up because that was only a one-semester class. ... I had to do that senior year, but that was online and it wasn't horrible."

Contributed / Amy Hull

During Emma's treatment, a silver lining for the Hulls was that living in Rochester meant Mayo Clinic wasn't far from home.

"All my friends are here," Emma said. "I had visitors in my room like every day. My nurses knew me as the 'party room.' ... To be the one that always had people over, it was a little different as compared to other patients that were there with just them and their parents."

One of those other patients was Ruth Pasek . Emma met Ruth and her family on Christmas Eve 2018.

"She was diagnosed as the same cancer as me, only she was stage 3," Emma said. "She is originally from Michigan, so when she came, she stayed in the Ronald McDonald House her entire time here."

The Paseks were like a second family to the Hulls, Amy said. Emma's friendship with Ruth continued outside of Mayo Clinic's walls, and now Emma is helping Ruth with a Leukemia & Lymphoma Society fundraising campaign.

"Ruth was nominated for the Visionary of the Year award this year," Emma said. "She gets to put together a team of other people that will help spread the word and fundraise for her team."

Emma and Amy got the call from Ruth in December, and they joined the team, which has a goal of raising $75,000 by May 4.

"We each have our individual fundraising page, but then everything that each team member's fundraiser (earns) combines together in the team page," Emma said.

Donors can contribute funds through Emma and Amy's Facebook fundraiser or directly through Emma's webpage at pages.lls.org/voy/gr/gr23/ehullm on the LLS website.

Once Emma reached the "after cancer" phase of her life, she had a clearer idea of what she wanted to study in college. She said she learned about child life specialists when she was receiving cancer treatment at Mayo Clinic.

"They are medical professionals, part of the care team, and they help kids and their siblings and their parents and their whole family to be able to cope with what they're going through," Emma said. "They help educate — when I got my port, they brought in medical dolls that show where the port goes and what it does."

After that, Emma said she knew she wanted to become a child life specialist. After researching different colleges and programs, she ended up picking Edgewood College in Madison, Wisconsin.

"I got a big booklet in the mail from Edgewood, and one of the pages of that booklet had a list of all the majors and programs that they offer," Emma said. "And child life was one of those, and up to that point, I had no clue that child life was an actual degree you could get."

Now, Emma's in her second year of her five-year combined B.S./M.S. degree program. She said she's not sure if she wants to focus on pediatric cancer patients as a child life specialist, or work outside of hospitals — child life specialists can provide support for kids at summer camps, dental clinics and funeral homes.

"I think I'll have to go into a hospital setting at first for five years, at least just to get experience under my belt," Emma said. "But after that, I can kind of pick and choose what I want to do, where I want to go."

Traci Westcott / Post Bulletin