How Hank Left His Mark: Join the Henry Schueler 41 & 9 Foundation in Supporting Children Diagnosed with Acute Lymphoblastic Leukemia (ALL)

Henry “Hank” Schueler was that kid everyone always wanted to have on their team.

Henry “Hank” Schueler, Henry Schueler 41 & 9 Foundation“He may not have been the top individual athlete,” explains Hank’s father, Matt Schueler, of his son who loved football and baseball, “but he loved sports and was a natural leader on his teams. He played hard and had such a fun-loving personality.”

So, when Hank was in his 8th grade year at Chicago’s St. Mary of the Woods in 2006 and went to his parents complaining of severe back pain, Matt and his wife, Susan, took him seriously.

“We brought Hank to see a family friend of ours who was a surgeon and he ordered an MRI,” Matt remembers. “He saw some abnormalities and wanted to run some more tests.”

The irregularities that appeared on the initial MRI turned out to be irrelevant but required the physicians to take further tests. Hank was ultimately diagnosed with a rare subtype (hypodiploidy) of acute lymphoblastic leukemia or “ALL” that November. Because of the generally poor prognosis of this disease, it was recommended that Hank undergo a bone marrow transplant following a four-month block of intense chemotherapy at Children’s Memorial Hospital in Chicago.

On March 9, 2007, Hank’s 14th birthday, he began his pre-transplant therapy at Children’s Hospital of Wisconsin. A few days later, he received his new marrow from a 27-year-old man from Germany. Forty-one days later, he enjoyed his first full day out of the hospital. He went back to school in time to graduate with his 8th grade class in June, and returned to his beloved baseball team later that month, well ahead of schedule.

According to his transplant team, Hank recovered quicker than any other patient they had ever treated. Anyone who knew Hank well was not surprised. He went on to enjoy a full summer with family and friends before beginning high school at St. Patrick’s in August 2007.

Unfortunately, in early September, Hank’s leukemia unexpectedly relapsed. He once again had to begin chemotherapy treatments to put his leukemia in remission. At the end of September, he developed a fungal infection, a risk not uncommon to immuno-compromised patients like Hank. He fought hard over the next two-and-a-half months against both the invasive infection and the underlying leukemia and received another bone marrow transfusion from the same anonymous German donor the day after Thanksgiving. Sadly, in mid-December, the infection progressed and caused an intracranial, resulting in his death on Dec. 14, 2007. 

“Hank didn’t want to die,” says his dad, who retells this story as if it happened yesterday and not more than 10 years ago. “The doctors always spoke to him as if he were an adult, explaining all of his options, making it clear how difficult the fight would be and how uncertain they were that it would be worth it. But Henry always chose to fight.” 

One particularly tough night when Hank was home from the hospital, he was resting on one couch in their family room as his father slept restlessly on another nearby. Reading his dad’s body language, Matt recalls, Hank said, “Dad, stay strong. We’re going to beat this thing.”

When Hank sensed that the end was near, he asked his mother to make him a promise — to find out why this disease happened to him and to help make sure it didn’t happen to anyone else. To ensure that Henry’s wish was honored, his mother met with one of the country’s preeminent physicians in the field of acute lymphoblastic leukemia (ALL) soon after he passed.

“I don’t know where Susan found the strength to do this in the midst of all of her grief,” Matt says, “but that initial meeting was the basis for what made Henry’s last wish come true.”

The Schuelers ultimately created the Henry Schueler 41 & 9 Foundation — these numbers representing Hank’s jersey numbers, as well as numbers that were significant during his illness. The Foundation was founded to make a profound impact and change lives for the more than 3,000 children diagnosed with high-risk, ALL annually. ALL is the most common type of childhood cancer and 3 of 4 children diagnosed with leukemia are diagnosed with ALL. It’s most often found in children younger than age 5. The five-year survival rate for children with ALL has greatly improved over time and is now at 89 percent.

Many patients like Hank who undergo cancer treatments as he did, as well as others who develop diabetes, lupus, and undergo organ transplants, become immuno-suppressed and subsequently are at higher risk of developing life-threatening fungal infections such as Mucormycosis, a rare but serious condition caused by a group of molds called mucormycetes.

The Foundation’s goals are to dedicate funds to address both conditions through donations and annual fundraising events. The Foundation is reaching its goals by allocating fundraising dollars specifically toward:

  • Grants to leading national institutions for the most comprehensive analysis of ALL ever performed.
  • New research grants to support a study to develop diagnostic assays that will assist in early diagnosis in antifungal therapy for the treatment of Mucormycosis.
  • The creation and publishing of the world’s most comprehensive and authoritative infectious disease supplement on Mucormycosis.

To date, on the leukemia side of research, the Foundation has already accomplished the following:

  • Supported the first study to provide insights into the genetic basis of hypodiploid ALL.
  • Funded a study that showed that the prognosis of hypodiploid ALL is not always bad, but can be predicted by early response to therapy (MRD).
  • Supported a study showing the potent activity of BCL2 inhibitors (venetoclax) in hypodiploid ALL (trial now open).
  • Continuing to support studies in the lab that find new therapeutic approaches, and understand how the mutations drive leukemia development.

“I don’t think the Schuelers ever imagined they would be changing lives the way they are,” says Brendan Garrity, one of Hank’s best friends and a Henry Schueler 41 & 9 board member. “I know of families who have emailed Mr. Schueler when they felt like they had no other options and he was able to connect them with the doctors who saved their children’s lives. It’s incredible and I’m so fortunate to be part of the board that is making this happen.”

To this end, Garrity is co-chairing the 4th Annual Gala & Casino Night on Saturday, Jan. 25 at Chicago’s AceBounce to raise much-needed funds for the foundation to continue its work. 

Henry Schueler 41 & 9 Foundation Casino Night

“This event is geared at my peer group,” says Garrity, who is in his 20s. “Last year, we raised more than $20,000 at this event. I’m so proud of this because my friends and I don’t have the income yet to give lots toward organizations like this one, but we have come together and really made a difference for this foundation.”

Tickets to the Gala & Casino Night are $145 each and include open bar, appetizers, and poker chips for black jack, craps, roulette, and more. There will be a chance to win prizes to Bears, Bulls, Blackhawks, and Cubs games as well as gift cards.

Henry Schueler 41 & 9 Foundation Casino Night

Henry Schueler 41 & 9 Foundation Casino Night

“I love that Hank’s friends have stepped up in such a big way and continue to keep his memory alive,” Matt says. “I don’t think they’ll ever know what it means to my family and the families they don’t know whose lives they’re changing forever.”

 

To learn more about the Henry Schueler Foundation or to purchase tickets to the 4th Annual Gala & Casino Night, visit henryschueler.org