On Sunday, July 29, 2012 the Henry Schueler 41 & 9 Foundation will host its 5th Annual fund raiser at Wrigley Field as the Cubs take on the World Champion, St. Louis Cardinals. The game is scheduled to begin at 1:20 pm. Tickets for the benefit will be specially priced this year at $100* for all ticket purchasers and will again include round trip bus transportation from the Schueler house (11:00 am departure) to Wrigley Field before the game, and back to the Schueler’s after the game. Attendees may wear past years green Foundation t-shirt if you so desire or order a new T-shirt for $10 a piece. Our group will again be allowed early entry to the bleachers.

*The Face value of the bleacher seat for this game is 87.36/ticket including all taxes. We do not receive a discount on the ticket price.

Reserve your tickets and/or t-shirts now by emailing connect@henryschueler.org. Please include the number of tickets requested including the number of adult and children tickets. If t-shirts are ordered, please specify children or adult size: Kids Small-Med-L-XL or Adult S-M-L-XL-XXL. Please include an additional $10 for each shirt purchased. All email orders requesting shirts will be considered final as of July 17, 2012 in order to ensure that all shirts will be printed in time for the game.
T-shirts can be picked up at the St Mary of the Woods parking lot on Saturday, July 28 from 10:00 am-12:00 pm. All payments must be received by July 28, 2012 and should be made payable to the Henry Schueler 41 & 9 Foundation. Please email any questions to connect@henryschueler.org.

Enjoy a day of Sunshine, Friendship and Remembrance at Hank’s Favorite spot. We are making a difference in Hank’s memory!

Members of the Chicago Fire Department’s Charitable Foundation, Ignite the Spirit,(Ignitethespirit.org) in partnership with the  Henry Schueler 41 & 9 Foundation (Henryschueler.org)  will be riding their bicycles across the country this spring to raise money to fight pediatric cancer and the infections children can contract when undergoing treatment. The ride is called the Coast2Coast4ACure ( Facebook/Website Coast2Coast4ACure.com) and will start in Torrance, California on May 20 and end  near Myrtle Beach, SC on May 31.  The group of 8-10 riders and 4-5 support personnel, composed of Chicago firemen, paramedics and members of the HSF 41 & 9 Foundation, including Jim Boyle and me will ride approximately 230 miles per day in a relay style  team.

This is the third year and third Bike Ride of this unique partnership between the Chicago Fire Department and the Henry Schueler Foundation which has raised over $100,000 for cancer related research.  Virtually all the money  raised by the Henry Schueler Foundation has been targeted for cancer or infection related research. The Foundation just published (Oxford Press) a Supplement to the Clinical Infectious Disease Journal entitled “Advances Against Mucormycosis: A Tribute to the Memory and Courage of Hank Schueler” The Supplement is also now on-line and can be viewed for free to any who  want to visit cid.oxfordjournals.org.  I urge you to visit this site to see what you have helped do for others.

Likewise, we have funded the  first Genomic Analysis of Hypodiploid Acute Lymphoblastic Leukemia (“HALL”) led by Dr Charles Mullighan from St. Jude Children’s Research Hospital and Dr Steven Hunger from Denver Children’s Hospital. This project led to a gene analysis of samples from patients with three different forms of this rare leukemia to confirm genetic differences that could lead to new treatments. The promising results of their research, dedicated to Hank’s memory, has been submitted to the journal Nature Genetics for publication. Your generosity has helped make this ground breaking research possible.

In October 2007, after Hank made a miraculous-like recovery from the initial onslaught of the fungal infection, he came home for a few days. You may remember the orange ribbons around the neighborhood and his appearance at the SMOW football playoff game. He was still very sick as his leukemia had resurfaced again and he was weak. Often he would sleep on the coach in the family room in front of the fire rather than go upstairs. I would sleep on the floor next to him and Uncle Joe would sleep on the other couch. Susan would get whatever sleep she could upstairs. We kept a urinal next to the couch so he did not have to walk to the bathroom. I woke up one night and looked at Hank sleeping on the couch, bathed in the light from the logs in the fireplace. His face was puffy from medications, his fluid pump was humming and he had no hair. Our beautiful boy was struggling with a sickness that he should not have had to face for 60 more years. I cried silently as I looked at him wondering how and why this happened to my son. He awoke shortly thereafter and had to use the urinal. Big Joe awoke as well to see if we needed help. Hank and I stood together as I braced him up so he could pee and he must have seen the tears still on my face. After he finished we continued standing, facing each other, leaning my forehead onto his fevered forehead. And he said to me: “Dad, stay strong. We are going to beat this thing.” Hank was now the consoler, a young man who simply refused to quit. I could never have a more heartbreaking or prouder moment as a parent. (Read More…)

1. May your name never be forgotten by those who knew you
2. May the memories of your life never be distant from our minds
3. May we always remember the joy your life brought to us
4. May your love for your family inspire us all to be better parents, children and siblings
5. May your passion for life remind us how much we have not experienced
6. May your gift of friendship be shared with those who need it most
7. May your fight to live keep us from taking life for granted
8. May your refusal to surrender inspire others to keep fighting
9. May the love that surrounds your family be shared by all who suffer
10. May your example of strength lift us when we are weak
11. May your spirit comfort us when we are sad
12. May your sacrifice in life help us help others live
13. May the seeds of charity you left behind continue to blossom and grow
14. May the numbers 41 and 9 always be worn with pride
15. May we face our own death with the courage you showed
16. May the sound of your laughter brighten even the halls of heaven
17. And may you never forget how much we miss you.

Love, Dad, Mom, Anna and Joe

All of the fund-raising activities we have done- Cubs game, Oktoberfest, Barry Silver efforts, direct appeals, personal generosity- provided for this event. I truly wish all of you could have been there. These were not just world class experts in the infectious disease field, they were world class human beings. I mentioned to Tom Walsh that same observation and he made it clear that this gathering of individuals was not left to chance. As he stated, there are a lot of experts in the field of infectious disease, but not all of them carry the human touch and selflessness that this group did. By the way, Tom Walsh may be the most singularly impressive human being I have ever met. Next to Susan of course!

To a person, each of them appreciated the chance to hear Hank’s story. Though some are clinicians, many are research scientists who are somewhat removed from the human element. Though uncommon, mucor infections are not rare and it ravages several categories of people not just those like Hank who are left almost defenseless because of immune suppression. For example, diabetics are at greater risk than others to develop fungal infections than persons with a normal host defense.

I had an opportunity to tell Hank’s story as painful as it was to do and to thank those who made this possible-namely all of you. Dr Cecille Sulman, Hank’s primary surgeon in Milwaukee, addressed the audience in detail of their efforts to surgically stay in front of this fungus. One need only to review her presentation to be reminded of the suffering Hank experienced and true courage he displayed. Many of the Drs who actively engage the big pharmaceutical companies for funding, believe strongly that these companies need to hear the toll of human suffering these diseases bring. They were deeply affected emotionally by his story-a feeling not often associated with the clinical approach Drs must take to their daily tasks. At the outset of his presentation, one of the presenters even cracked a bit emotionally, stating that while he obviously did not know Hank, everything he heard over the last 24 hours made him wish he had. Thanks to all of you for helping to tell that story. As Dr Spellberg from UCLA stated, the pharm companies need to fund this research not because it will make them money-it won’t-but because it is the right thing to do.

To that end, inquiries were made of our Foundation’s willingness to participate where needed in the efforts to attract funding for these badly needed research projects. We were even invited to participate in the next International conference in Greece on May 28-30, where many of our participants will again be featured speakers. We will also see if we will be called upon by some of these Drs. in their efforts to attract funding from the pharmaceutical companies.

You should also know that the Chicago area infectious disease community embraced this conference and expressed their privilege to be there. Our Board medical adviser and neighbor Dr John Flaherty, Professor of Infectious Disease at Northwestern was present for the entire day and brought with him a junior attending physician from Northwestern, Dr Michael Augerone, whose specialty study is the care of immuno-compromised patients. Dr Andrew Bonwit, attending physician from Loyola Medical School attended the full day. Two infectious disease fellows from the University of Chicago were present as was a fellow from Childrens Memorial Hospital. When people like Dr Flaherty tell you what an amazing collection of individuals have come together for this conference and the importance of this work, you know you have accomplished something great.

Your efforts and generosity have opened the door to some amazing opportunities-the HALL research, the Zygo research, the Ignite the Spirit event, our annual Cubs games. One only need to listen to those that we benefitted by holding this conference, the Drs and researchers who are on the front lines of treating our collective children, who spoke of their deep and abiding appreciation for our little Foundation to step forward where others choose to sit on the sidelines and wait for someone else to help. They were amazed by our courage and fortitude just as we were amazed by their talent and commitment to medicine and to fighting disease.

Nothing will change Hank’s course or our personal and collective loss of his presence on earth. You all understand how deep our loss is and will continue to be, just like you have been there for Susan and Anna and Joe and me in the past, and just like you were there for Hank during his illness. Yes, I am driven to make a difference in Hank’s name and memory. All of you ignited that spirit when you selflessly approached us with the idea of a Foundation and/or supported financially and emotionally this Foundation. We will not stop here. We will continue to push for cures and beter treatment options. Susan and I could not be prouder than to be associated with each and everyone of you and to be able to call you our friends. Thank you all for making this happen. I am convinced that somewhere down the road, some family will be thanking anonymous Foundations and people like all of you that have built this Foundation, that helped save their child’s life. Your friends always, Matt and Susan

The dresser we bought for Hank when Anna took over his crib and forced him into a big boy bed. “Forced” may not be accurate since he could no longer be contained by its bars or rails and did not seem overly attached to it. We bought not just one single bed with a trundle for Hank, but two. Susan was sure we would need the extra bed for other children and the young guests we would most certainly be hosting over the years. As usual, she bought good solid furniture not the ” less expensive” kind I probably favored. You want furniture to last she said, something the kids can use for the next 15 years and take someday for their own kids. Seemed a long way off but I would not win that debate. Though we bought two beds we shortsightedly only bought one dresser. I guess that was reasonable at the time given that we did not know Joe would be coming down the pike.

Hank’s dresser was solid. With rounded edges and smooth texture. Strong, masculine, with drawers that opened easily. And it became as dressers do, a repository of a young boy’s possessions. Not just underwear and socks, and shorts and t-shirts. But also baseball cards, baseballs, ticket stubs from sporting events, momentoes of firsts, programs and photographs
chronicling life’s new experiences. Sure there was junk too, enough over the years that we would clean it out together on occasion.

But today I had to move it. It was not particularly big and I did not need to move it very far. I moved it into the closet Hank and Joe shared, pushing aside clothes and the “stuff” that accumulates inside of a small little area that thankfully has a door that keeps it inside. The dresser still has much of his clothes, the t-shirts that bear reminders of the places we visited or events attended, the workout shorts and uniform tops and bottoms from St Mary’s, St Pat’s and the Bulldogs.

And of course his top dresser drawer, the special drawer, that grew as he grew, filled now with pictures of his friends, old cell phones, sprays and hairbrushs, signs of the adolescence that for Hank was all too fleeting.

More poignantly and of more recent vintage still, were the prayer cards people sent during his bone marrow transplant, the cards containing well wishes, the medals of Saints blessed by priests to watch over and heal him. He kept those too, reminders of the love that supported him and us when he was sick. He did not know we would need them again so soon.

In the top drawer also was his 2007 St Mary’s class picture. The youthful faces with their caps and gowns, so full of hope and pride as they stood at long last at the top of the heap at the school that was their second home for the last 9 years. Hank was in that picture too though the puffy cheeks and bald head gave away his state of being. But not his smile nor the twinkle in his eyes, still full of confidence and mischief despite the uncertain journey he was soon to embark on in Milwaukee, his 14th birthday, just a few short weeks after his picture was taken.

And so it was on Presidents Day, February 15, 2010 that I moved his dresser to make room for a desk for Joe. The dresser of Hank’s youth, full of hope and life now tucked safely away into a darkened closet….

It was the heaviest thing I have ever moved.