When Kathleen “Cookie” Topp, DSHA ’18, needed a bone marrow transplant in 2013 following eight rounds of chemotherapy fighting T-cell lymphoma, her sister Annie Topp, DSHA ’16, a freshman at DSHA, was a perfect match.
The DSHA community immediately rallied around the Topp family. Prayers were said before class, and rubber bracelets were passed around school that read “One Tough Cookie.”
“DSHA wrapped their arms around Annie and supported her greatly,” Cookie said. “Being able to see how supportive they were of her and me —and they didn’t even know me — I knew I wanted to go to school at a place that had such a strong community.”
After Cookie had her bone marrow transplant, she was on a high-dose steroid that attacked her large joints. She entered DSHA her freshman year on crutches after receiving a full hip replacement just weeks before.
“The day I walked in, everyone opened their arms to me and treated me like a normal kid, which is what I wanted,” she said.
Years earlier, Cookie was like any middle schooler—active in sports— until bumps about the size of a quarter appeared on her legs. A week later, five or six more appeared, and they wouldn’t go away. After three weeks of visits to the pediatrician and Children’s Hospital, Cookie was diagnosed with T-cell lymphoma in seventh grade. The white blood cells in Cookie’s body, also called T-cells, develop abnormalities that force them to attack the skin.
The cancer is normally seen in 40-50 -year-old African American men, so treating this type of rare cancer on Cookie amounted to many unknowns: she was a Caucasian 12-year-old girl.
“The first thing I said to my parents when I found out I had cancer was that I just wanted to be a normal kid and feel better,” Cookie recalled.
Therefore, she tried to go to school as much as she could. When she had to spend chunks of time in the hospital, she had a robot VGo that showed her the inside of the classroom at St. Jude School in Wauwatosa; she had tutoring in the hospital; and her teachers helped her understand the basic concepts she needed for high school when she missed large portions of seventh and eighth grade. Her freshman teachers at DSHA helped her catch up as well.
However, the more time she spent in the hospital, the more her interest in medicine grew. Today, Cookie is a sophomore at Xavier University studying to become an oncology nurse.
“In my weakest state, the nurses were always there to support me. They got me through chemotherapy and everything. I want to be that for someone going through something similar.”
One of those nurses was Kathleen Maloney, DSHA ’06, a nurse in the oncology and bone marrow transplant in-patient unit at Children’s Hospital. While Cookie was fighting cancer, she and Maloney shared the same connections and friends inside the DSHA community. Maloney’s fear of anything happening to Cookie under her care overwhelmed her.
“I eventually realized that (having Cookie as my patient) was for a reason,” Maloney said. “We both came out better at the end of it because the connection we had was different. I was a part of the community she was coming into.”
BEGINNING TO TAKE ACTION
While Annie Topp had a sister with cancer, her classmate Abby Barczak, DSHA ’16, and Abby’s sister Georgia Barczak, DSHA ’20, were struggling as their father was diagnosed with throat cancer; he is now in remission. Only a few years earlier, their cousin, Liam Merz, brother of Elizabeth Merz, DSHA ’21, was diagnosed with acute lymphoblastic leukemia. This type of cancer is caused when the bone marrow makes too many lymphocytes, a type of white blood cell.
Liam went through three and half years of chemotherapy and rang the bell at Children’s Hospital when he was 6 years old, signaling that he was done with treatment. Now a 7th grader at Christ King School in Wauwatosa, he has been in remission for 6 years.
Because Elizabeth and Georgia were only middle schoolers while their families went through cancer and treatment, they are now taking action to fight cancer through the Leukemia and Lymphoma Society (LLS).
SCHOOL AND STUDENT SUPPORT
Elizabeth and Georgia are part of the LLS Student of the Year campaign, a seven-week leadership development program, with a competition between high school teams to raise the most money for cancer research. There are about 20-30 teams participating in the campaign, ending March 12, and many DSHA students are involved, both on Elizabeth and Georgia’s team, Cousins’ Cause, as well as other area teams.
“A really big reason we’re doing this is because we were given so much the time that both Liam and my dad were sick, and we had a really good community around us,” Georgia said. “I think that’s a big thing we learn at DSHA—that you are to give back to your community. Since we have this opportunity to give back, it was something we had to do.”
As part of the Student of the Year Campaign, Elizabeth and Georgia experience workshops focused around leadership and fundraising. However, according to Elizabeth, they’re way ahead of the game.
“I think we already know a lot of these skills,” said Elizabeth. “We do see people at these different workshops who have never talked about these topics. I think DSHA has taught us leadership, ideas for fundraising, organization skills, public speaking, and ways to access your network.”
Overall, said Elizabeth and Georgia, the DSHA community has been “very generous” in helping them achieve their fundraising goal of $50,000. They have received donations large and small, from friends and other individuals they don’t know personally.
“Everyone is affected by cancer and that’s why we’ve been successful so far,” said Georgia. “Cancer affects all of us in some way, shape, or form, and everybody wants a chance to give back.”
“Having the opportunity to do this type of thing, you see how many people are connected to cancer,” added Liam.
MORE THAN A PATIENT
Elizabeth and Georgia’s team, Cousins’ Cause, includes members that are no longer high school students. One of those members is Maloney, who, in addition to her profession as a nurse, is one of Elizabeth and Georgia’s rugby coaches.
When Georgia asked Maloney to be a part of her LLS team, Maloney was taking care of three patients: one who had just been diagnosed with cancer, one who was about to be discharged after being done with treatment, and one whose cancer had relapsed.
“These patients were at different stages of treatment,” Maloney said. “No one should ever have to go through any of this. I was totally on board to support cancer research so we can get rid of childhood cancer.”
Maloney said that Elizabeth and Georgia are motivated by their own cancer experiences and by the experiences others have had; she couldn’t say no to helping the team’s cause.
“It just shows how incredible teenagers can be," Maloney said. "Teenagers can sometimes get a bad reputation. Teenagers can be so kindhearted and want to do good things for the well-being of others.”
Maloney seems to understand teenagers, according to Cookie. “She was more of a friend than a care provider,” Cookie said of Maloney when she was her nurse. “It was a normal conversation whenever I talked with her. I didn’t feel like a girl with cancer. She was someone there I could hang out with. We both love sports, our communities overlapped, and she’d watch Grey’s Anatomy with me when I couldn’t fall asleep.”
“It was an on-going joke around the unit that I must be overly busy during the day, but I really spent so much time with Cookie and the Topp family,” Maloney said. “Cookie and I share the same name (Kathleen), and we knew a lot of the same people. Things just kind of fell into place, and we had very similar personalities.”
While looking ahead to high school, Cookie saw DSHA in Maloney. Maloney was everything DSHA embodied. In addition, Cookie’s parents were comfortable knowing she was in capable, DSHA alumna hands.
“I had a great impression of DSHA from just knowing Kathleen,” Cookie said of Maloney. “She is confident, easy-going, has a great personality, and advocated for what was best for me and my needs.”
Maloney and Cookie still stay in contact today—Cookie will often text Maloney with questions about topics she’s learning about in nursing school.
CHANGED FOR GOOD
Just as Maloney made Cookie feel comfortable, Laura Hughes, DSHA ’00, helped Liam Mertz feel comfortable when she was his primary clinic nurse at Children’s Hospital.
“I would see her, and I would be calm and be fine taking my chemo,” Liam said. Looking back and now knowing she went to the same high school as his sisters and cousins, her way of caring for others and her positive influence on his treatment all makes sense, he said.
“When Liam had treatment, my parents loved Laura,” Elizabeth said. “She really helped my parents get through it. No one knows what they’re doing when they have a child go through cancer.”
And while the Merz’s may have felt lost, Hughes was always there, every time they came into the hospital over the course of Liam’s 3-year cancer journey. They have continued to stay in touch, and Hughes said they’ve talked about the benefits of a faith-based education. Hughes is the perfect example of what continuing that education beyond Catholic grade school looks like.
As much as Hughes helped the Merz’s, Hughes said she is a better person for knowing Stephanie and Mark Mertz, Liam and Elizabeth’s parents.
“As a pediatric oncology nurse, you meet families in extreme stages of crisis and sadness — in a way, you are a guest in their lives during one of the most difficult diagnoses a child can be given,” Hughes said.
But for Maloney, when a child like Liam or Cookie are told they are in remission, it’s rewarding and inspiring— the joyful part of working with children with cancer.
“You’re part of one of the worst part of their lives, and to see them come through the other end is a powerful experience,” Maloney said.
LIVNG LIVES THAT MAKE A DIFFERENCE
For both Hughes and Maloney, DSHA is a big part of where they are now in their professional careers.
Hughes no longer works at Children’s Hospital but is a pediatrician at Westbrook Pediatrics.
“My experience at DSHA has provided me with an awareness and an importance of pursuing a profession that centers around service to others,” she said.
Maloney is currently in graduate school, studying to be a nurse practitioner. While she was taking care of Cookie, she learned so much about her type of cancer and realized she wanted to learn more and go back to school in order to do so.
“At DSHA, we are taught to be independent and driven,” Maloney said. “I have a desire to do better, to better myself, not only for myself, but for my patients and their families.”
Any cancer patient will tell you about the connection they feel to their caregivers – especially their nurses who are with them in the day-to-day grind of treatment, cheerleading, healing, and moving toward the hope of life as they once knew it.
When that connection is formed through a shared community—when DSHA is a part of Maloney’s, Hughes’, Cookie’s and Liam’s story—the bonds grow even stronger.
“I had a friend from DSHA who told me about Cookie before I was her main nurse,” Maloney said. “The fact that she was very close to one of my best friends from DSHA and so many people knew her from DSHA was very eye-opening to me. Her case hit very close to home for me.
“It was an incredible experience to have. We were able to share the hope, joy, and determination to fight her cancer. I get to call her my friend and my DSHA sister, and that’s really special.”