December 14. It is a special date for some. A birthday (my niece among others), a wedding anniversary, perhaps another special milestone for others. For us it will always be the day Hank died, two years now. A cause for celebration? Not for us but we trust it is for Hank. We will never forget that day nor will any of us who were with him to say our last earthly good-byes. I have written before of how shortly after he died a glimpse of sun broke thru the gray, cloudy sky as Uncle Joe and Little Joe looked out the hospital window. Hank's curtain call for us, a tip of his cap perhaps. It is what it was for those who saw it or who care to believe in its symbolism or reality. But Hank's presence in our lives did not cease to exist when he left us on December 14. As his gravestone reads for generations to come, " Hank was all about living. He still is."

And he is, not only in the memories that we hold of him but in the spirit of giving that his life and death has provoked. And because of that spirit we are now able to give back in his memory to the generations to follow.

The projects have long been talked about but are now coming to fruition. The first Geonomic 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 will begin. This project will complete 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. This project is scheduled to be completed in 12 months.

And on January 20, 2010 the Henry Schueler 41 & 9 Foundation Forum, chaired by Dr. Thomas Walsh (Chief of Pediatric Infectious Disease for the National Institutes of Health) will meet here in Chicago for a conference entitled: "Meeting the Challenges of a Life Threatening Infection in Immunocompromised Children and Adults". Dr. Walsh has invited some of the world's leading fungal infection experts to collaborate in a joint-effort to create guidelines for the diagnosis, treatment and prevention of this emerging and life threatening infection that attacks patients whose immune systems are weakened by chemotherapy treatment. They will then submit their work for publication in Hank's memory. Local area pediatric clinicians and researchers will also be invited to attend.

It started with a kid who was like so many other boys that loved sports especially football and baseball, whose biology in the prime of his youth went haywire for a reason known to no one. A disease subtype so rare that there are only 100 or so samples of its genetic makeup that exist since 1986. One of those samples to be tested by Dr Mullighan will be Hank's. Even knowing his marrow exists brings him to life in yet another way. If his marrow could talk, I suspect he would make sure the researchers and physicians involved knew darn well that it was his family and friends that were behind this important work. Oh, and I suspect he would add, "make sure you get it right". Because of all of you who rallied behind him and us when he was diagnosed, rejoiced with us when he recovered, cried with us when he relapsed, stood vigil with us as he teetered between life and death, thrilled with us when he declared he would not die and then came home, and finally grieved with us when he left us, we live, and yes Hank lives, to carry the fight forward in his honor for future children who are also destined to face this nemesis and other life threatening cancers. And because of you we have assembled some of the foremost experts in the world who voluntarily come to Hank's hometown of Chicago in the middle of winter no less, to brainstorm on the best medical approach to a fungus that cruelly and silently took his eyesight and then his life. Because of Hank and because of all of you who prayed for Hank, supported us with meals and friendship and/or donated money to a fledging Foundation that grew from a neighborhood in northwest Chicago, this forum comes together in Hank's honor.

Yes, December 14 is the day that Hank died. Nothing will ever change that. But it is also the day that inspired the seeds of a gift of life for others.

I do not overestimate the significance of this work by these physicians. The first geonomic analysis of HALL will probably not directly result in a cure for this disease or a cure for cancer. The symposium will not prevent other children or adults from contracting or being ravaged by an invasive fungus. But it is a step forward to the goal of finding a cure for both. Hank never gave up fighting. He never surrendered. Neither will we. So for all of you who are celebrating a birthday or an anniversary or other milestone on December 14, have a happy day, full of joy and love. There is no reason to mourn. Our tears on December 14 will be the same as any day that we live without Hank in our lives. But those tears will not be shed without hope in the life Hank still lives in and among us who knew him, or without pride in a legacy defined by his spirit of living and a community of friends and family defined by their spirit of giving.

Christmas blessings to you all! In gratitude, Hank*, Matt, Susan, Anna and Joe Schueler.