Making lemonade: Glen Ellyn boy shares bond with Anthony Rizzo over baseball, cancer

He used to have straight hair like his two younger brothers. He now has a thick mane of "chemo curls" resembling his mom's ringlets.

"I'm kind of happy that I lost my hair because now it's curly like you," he tells her Friday afternoon in their Glen Ellyn home. "So now I'm like you."

The sweet comment makes his mom smile. But Jennie Burke also knows his hair makes people think her son is a thriving 9-year-old boy. What they don't see is the port in his chest administering chemotherapy in addition to the oral drugs his mom gives him daily as part of his treatment for leukemia.

"All in all I think everyone thinks he looks great," she said. "He's lost his hair twice. It came back these beautiful chemo curls, and everyone on the outside thinks he's doing amazing. They don't see the reality of pediatric cancer. It's ugly, and there are days that are really heartbreaking and difficult and definitely hard to manage as a whole family."

Burke chronicles the realities of pediatric cancer on a Facebook page and blog. She's vulnerable and honest about the ordeal and even grateful for the "gifts of cancer."

But she wants the outside world to understand the toll as an advocate for childhood cancer research funding. Benjamin, too, has become the face of fundraisers and awareness campaigns for Ann Robert H. Lurie Children's Hospital of Chicago.

Mother and son also have an ally in their cause: Benjamin's buddy, cancer survivor and Cubs first baseman Anthony Rizzo.

"For us, he's not a celebrity," Burke said. "He's just this nice guy who cares about Benjamin and happens to also be an incredible person on the field."

A nice guy

In his innocence, Benjamin remembers a few details from the day he was diagnosed with T-cell acute lymphoblastic leukemia after a visit with his pediatrician for a suspected ear infection. It was shortly after his seventh birthday in December 2015, and his mom made chicken nuggets for dinner.

But the fourth-grader at Ben Franklin Elementary will never forget that first surprise meeting with Rizzo during an inpatient stay at Lurie Children's about four months after his diagnosis. Rizzo, who survived Hodgkin lymphoma, brought one of his jerseys and had Benjamin sign it.

"In that first meeting, Benjamin was actually really sick and got sick himself," his mom said. "And the way Anthony handled that situation with such grace and just didn't even focus on that at all was incredible and certainly a testament of the fact that he's lived through it himself."

It's not a one-sided friendship. Rizzo has caught up with Benjamin at Cubs batting practices. Baseballs, jerseys and bats signed by Rizzo adorn Benjamin's bedroom.

And for the third year, Benjamin and his family will host a lemonade stand Sunday to raise funds for the Anthony Rizzo Family Foundation, a charity that supports Lurie Children's and families of pediatric cancer patients.

"They've really raised funds to support families in ways that other organizations don't," Burke said. "They help pay mortgages. They help pay medical bills. They sadly pay for funerals."

The first lemonade stand in the driveway of the Burke home raised $26,000 for the foundation. The family collected $44,000 in 2017. And Benjamin is confident they can top that with the support of a Glen Ellyn community that wears "Brave for Benjamin" shirts and puts "BBB" bumper stickers on their cars.

"What gets this town rallied around us is it could have been your child," said Burke, who's baked 1,500 "Burke Bars" for the event. "There's such a relatability of how I took him to the pediatrician and what for and then all of a sudden our lives were ransacked by cancer."

'Pay attention world'

Glen Ellyn families have been touched by Benjamin's story through the family's advocacy. Benjamin has served as a Lurie ambassador for Children's Miracle Network Hospitals and will represent the group nationally next year.

"September is Pediatric Cancer Awareness Month, and my Facebook feed is full of other cancer moms," Burke said. "It's like we're screaming from the rooftops, 'Pay attention, world. Someone needs to care about our kids.'"

Their rallying is "more than four," referring to the roughly 4 percent of all cancer research funding provided by the federal government.

"It's bittersweet that there are kids fighting for their lives having lemonade stands, and that is what's funding research," Burke said. "People are having lemonade stands for St. Baldrick's and other organizations that are funding projects, but it's literally insane. You know that the people in the trenches are doing the work to help the people behind them."

Burke draws attention to the few advances in pediatric cancer treatment over the past two decades or so. The main chemotherapy drug her son received was developed 35 years ago, she said.

"There are a lot of cancers with zero options still for kid, and so we are lucky to have options, but his life will forever be changed because of what's been oozing through his body," said Burke, noting her son's memory loss, among other long-term side effects.

Sharing his story

Benjamin is 33 months into a 3#xbd;-year treatment protocol set to end in April. His most recent monthly blood test showed no leukemic blasts, but the threat of a relapse or an infection with his weakened immune system are constant sources of anxiety for his mom. But she doesn't focus on those fears in front of her son.

"All of the stuff the rest of the world thinks and feels about cancer is not a part of his life. I've told people my No. 1 job was to bring VIP joy into his life, and I said if cancer's coming then I want the circus to come to town for him, and Lurie Children's does that for our kids. There's tutors, and magicians are some of our favorite people because they'll come at night sometimes just when you need a laugh."

And when she needs to find comfort, Burke thinks about Benjamin's compassion and empathy. To mark the anniversary of his diagnosis, his family collects hundreds of gift cards for other oncology patients at Lurie and their loved ones around the holidays.

"You have developed a maturity that most 9-year-olds do not have because you have lived a lot of life already," Burke tells him in their living room. "You do a really great job of representing the hospital because when you tell your story so bravely, than people recognize that the hospital needs funding and the Anthony Rizzo Family Foundation needs funding and kids with cancer need better treatment, right? So he is, as I say, #thecutestcancerspokesman around."

If you go

What: Brave for Benjamin Lemonade Stand Benefiting the Anthony Rizzo Family Foundation

When: 10 a.m. to 2 p.m. Sunday

Where: Franklin Elementary, 350 Bryant Ave., Glen Ellyn

Fundraising goal: $50,000

Details: Those who donate $100 or more are entered into a raffle for tickets to Cubs games and gear signed by Anthony Rizzo. The event also will double as a blood drive and signup for bone marrow donations. Those unable to attend can donate at a virtual lemonade stand through December at <a href="https://www.crowdrise.com/o/en/campaign/brave-for-benjamin?utm_campaign=oc&utm_medium=facebook&utm_source=crowdrise">https://bit.ly/2NEw5yi</a>.