Aug. 28, 2014
By: Renee Peggs
A little child's recurring illness. A mother's intuition. A nurse's wisdom. A physician's diagnosis. A hospital's collaboration with a university's athletes. A relationship's transformative power. A hope that does not wane. A power for good. A fight for life.
This is the story of not just one family but many. Few people can imagine anything worse than learning that their child has cancer. Normalcy ceases. Anxiety and fear threaten to overwhelm. Priorities shift. Every moment seems to hold heightened significance.
For the children and families who take part in the Fighting Irish Fight for Life program at the University of Notre Dame, there is something else.
"I just wanted to be a normal mom with a calendar full of my daughter's activities," says Ashley Bennett, house manager for the DeBartolo Performing Arts Center, "but instead it was `OK, we have chemo on these days and these pills to take and these doctor appointments ...'Fight for Life was our bright spot, what we looked forward to, what got us through this time."
There is hope. There is healing.
Bennett's 11-year-old daughter, Maria, just finished her last round of chemotherapy two weeks ago.
Back in 2012, Maria had persistent sore throats, high fevers, and petechiae spots on her neck. Multiple doctor's visits confirmed the same diagnosis: strep. But a mother's intuition is sometimes more sensitive than medical indicators.
Hiding in her laundry room one night, Bennett could neither stop crying nor continue to deny her feeling that the doctors were missing something. The result of a Google search on Maria's symptoms prompted her to call Ask-a-Nurse. Bloodwork from a hurriedly scheduled doctor's appointment came back that afternoon: Maria had leukemia. The Bennett family was swept up in a whirlwind of panic and packing as it headed to Riley Hospital for Children in Indianapolis for Maria to begin treatment immediately.
Fortunately, the standard of care for leukemia is the same no matter where treatment is offered, so Maria and her family were soon able to return home, coming under the care of the pediatric hematology/oncology clinicians at Beacon Health (formerly Memorial Hospital of South Bend). Even though Bennett works for the University, it was only then that she learned about the Fight for Life program.
Since 2005, the office of student welfare and development (SWD) in the Notre Dame athletics department has partnered with the hospital to offer Irish athletics opportunities to assist local children with cancer. Young patients (usually between the ages of 6-17) are paired up with a Notre Dame varsity team that becomes an additional source of support and an outlet for alleviating some of the anxiety and stress that inevitably arise for families with a sick child.
"Some of these kids can get so depressed sometimes - their lives get so interrupted and the treatment can be so hard on them," says Alicia Whitmer, pediatric family advocate for Beacon Health and hospital liaison to the Fight for Life program. "But you see the student-athletes come in and interact with the kids and it gets them smiling again. It's so good for everyone."
When children come to the hospital for treatment, Whitmer asks a series of questions designed to help families decide whether they'd like to be paired up with a varsity team from Notre Dame. In part, the decision is influenced by the level of comfort parents have with releasing their contact information, and how they feel about their child being in photos and videos that the University will post to its Websites and social media. Once a family chooses to participate in the Fight for Life program, Whitmer contacts SWD and a match is made between the patient and an athletics team.
The Fight for Life program used to kick off each year with a pizza party where children and families would meet their Notre Dame team partners. Last year, however, an elaborate national signing day experience was created in which the children were made "official" members of their respective partner teams, complete with contracts, swag, paparazzi and all the attendant celebration of this athletics day in the life. Trading cards also were printed for each "signee" and each student-athlete from the sponsored team asked for each youngster's signature.
"She felt so special and proud with her Notre Dame team," says Bennett of watching Maria being signed to Notre Dame women's soccer. "As her mother, I got to enjoy that she was feeling so special at a time when she was sick, her hair had fallen out, she wasn't in school and wasn't doing all the things that I knew she really wanted to be doing.
"There's an absence of normal things that families get to enjoy when their child has cancer," Bennett says. "The touchdowns, the ballet recitals, all those things are not there for you during this time. Even report cards are not coming back the way you'd like - although Maria ended up getting straight A's all the way through her treatment ... signing day was our moment to see our daughter in the limelight, doing something special, in an environment where she didn't have to feel left out while she was so sick."
After that official welcome, teams invite their newest members to games, practices and fun social activities like bowling or ice cream. Children sometimes hang out with the varsity athletes in their locker rooms or on the bench during games. Every now and then, these opportunities to do something out of the ordinary develop into something extraordinary. The children and their families also were hosted at the Notre Dame Relay for Life in the Compton Family Ice Arena last spring.
Such was the case for Maria and her family. The Bennetts met 2014 Notre Dame graduate Elizabeth Tucker in 2012 when the women's soccer team "adopted" Maria through the Fighting Irish Fight for Life program.
"She became like family to us," Bennett says of Tucker. "We would watch her play as often as we could, even if Maria could only make it through part of the game. But Liz developed this incredible relationship with our daughter that continued past that first year with Fight for Life. Maria felt strongly that we needed to support Liz by going to the soccer games, because Liz was doing so much to encourage Maria."
Maria was equally inspiring to Tucker and her Irish teammates.
"Getting to know Maria Bennett my last two years at Notre Dame was an unexpected and incredible blessing," says Tucker. "Each and every time I was with her, I was amazed by how happy, confident, and fearless she was - despite her medical situation. She made me realize how much I had to be grateful for in my own life, how much more I could and should give to others, and how rewarding it could be to do that.
"Getting to know Maria's mother, Ashley Bennett, also was an incredible blessing. I continually was blown away by the grace, strength, and faith with which Ashley approached her life. I cannot think of a better role model to have had the past two years."
As a natural expression of gratitude, Maria's family gave Tucker a graduation gift earlier this spring. Sparkling jewels appear in Ashley Bennett's eyes as she remembers the occasion.
"Liz sent us the most beautiful card, thanking us and insisting that what she had received from us through this relationship was so much more than what she felt she had given to Maria. It was so absolutely incredible, I went to (Notre Dame executive vice president) John Affleck-Graves to make sure he knew that this wonderful program was not only having a profound impact on pediatric cancer patients and their families but also on the athletes who were giving so freely of themselves. Let's face it: Notre Dame athletics is a crazy-busy entity, but the fact that these student-athletes take the time to do that one little thing, for a child ... I can't say enough how much it means."
Pausing to dab at her eyes again, Bennett says, "I'm so glad you're not making a video of this interview, `cause I probably look like Alice Cooper right now ... (She doesn't. She is radiant and gorgeous and full of love.)
"I believe there is a reason this happened and that I need to find out what good I am supposed to do because of what my family has experienced. I feel that I cannot allow myself to get caught up again in work and business without paying attention to where my greater purpose lies and how I might give back."
Katherine McManus, a junior psychology major from Boston, has had a similar experience through Fight for Life. She met Bobby Russell last fall when he "signed" with the women's lacrosse team.
"He and I hit it off right away," McManus says, "playing that whole afternoon. I could tell there was something really special about him."
Even outside of her team's activities with Bobby and his family, McManus was spending time with him before each of his chemotherapy treatments, meeting his extended family, celebrating his sixth birthday and pouring love into Bobby's life.
"Fight for Life and my relationship with Bobby got me out of myself and my bubble of classwork, sports, social life. My friendship with this little boy has definitely given me a better perspective on life as a whole. We are so lucky to have this program," McManus says.
Like Bennett, though, she got more than she bargained for. McManus and her family went through their own personal horrific tragedy earlier this year, and she moved through the minutes and the days that followed, she realized she had received from Bobby perhaps more even than she had given him.
"I had learned so much from him about hardship and attitude, how to face a horrible situation with grace and poise and not let it attack your character. He has taught me, by how he lives and how he has fought his cancer, and I've been able to apply his lessons to this tragedy in my family."
This kind of relationship-driven experience is exactly what makes Fight for Life so transformational.
Bobby and Maria are now both in remission, but their Notre Dame teammates hope to continue the special relationships with these families for many years to come. Charity has become caritas, transformed by the spirit of Notre Dame.
What though the odds be great or small ...