Some people will say that the grief never goes away, it only changes. In the four years since David and Leanne Lacewell’s son Max died of a rare brain stem tumor at age six, they finally feel like reality has set in. It’s especially prevalent when kids go back to school.
“This time of year is always challenging,” David said. “It’s a painful reminder of what might have been with Max.”
And it’s not just because kids are going back to school but also the reality that life goes on. Their daughter Addie will enter high school this fall, and Max’s friends are now turning 10, a far cry from the 6-year-olds they were when Max died.
“People go on with their lives,” Leanne said. “But every first day of school, every Christmas, every birthday is a reminder that he’s not here. It’s tough and the further out it gets you know you have to go on with your life, but there is a lot of conflict there.”
They also want to make sure they are there for Addie who often found herself thought of as the girl whose brother had cancer.
“The name tag isn’t following her around now,” Leanne said. “We’ve done a lot to get her to come along with us.”
It helped that a friend of Leanne’s, who had lost a sister when she was younger, made sure Leanne knew that Addie needed to become a priority after Max died and not lost in the depths of their grief.
While the couple acknowledge they feel fortunate to live in such a supportive community like Naperville, they feel as though a cloud surrounded them, so they kept themselves distracted. After often living hour to hour, it’s time to go forward and see what the future holds.
“We literally just now started thinking about the future,” David said, acknowledging that they recently passed the anniversary of Max’s death in July.
They have been working on the Max Lacewell Foundation, a nonprofit formed with the goal of creating a research scholar position at Lurie Children’s Hospital in Chicago to research Diffuse Intrinsic Pontine Glioma (DIPG), the rare brain stem cancer that Max died from. So far, the Lacewells have raised more than $250,000 in less than three years through golf fundraisers, galas and 5K runs. They have several upcoming events this fall, including another 5K in late September and a gala in November.
They have given one check for $100,000 to Lurie and this year plan to write a check of $150,000. However, to achieve the goal of the scholar position, they will need $2 million.
Leanne is able to devote much of her time to the foundation, and the Lacewells have joined forces with the fairly new Naperville-based organization, I Support Community, which helps match people to charities through videos.
Leanne says founder Marion Ruthig is integral to helping her understand how to keep Max’s foundation growing. But Ruthig also sees the devotion of the Lacewells to making the scholar position happen.
“They have been amazing to work (with),” Ruthig said. “They invited me into their home and showed me photos, and we talked with his older sister. It was an amazing experience to try to tell their story.”
Ruthig also said that the Lacewells story hits close to home because one of her sons is starting kindergarten this fall, the age that Max was when he died.
“I think about the Lacewells a lot,” she said.
The foundation is a way to keep other families from enduring what the Lacewells did, and also a way to remember their son.
“On a personal level, a selfish level, it’s a way to continue to care for our son Max,” David said. “We find comfort in that.’