Stay Strong!

Many have asked me about the "Stay Strong" wording on the back of this year's Foundation t-shirt. I have written about it in the past but am happy to share the story behind it with you again.

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…)

17 Birthday Wishes for Hank

17 Birthday Wishes for Hank on the Eve of his 17th Birthday

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 (more…)

A day for learning… and Thanks

We are so proud to announce that the Henry Schueler 41 & 9 Foundation Forum on Zygomycosis was held here in Chicago on January 19-20, 2010. The Forum was Chaired by Dr Thomas Walsh, head of the Pediatric Infectious Disease Department at the National Institute of Health. Present were physicians and research scientists from MD Anderson Cancer Center in Houston, Tx, UCLA's Geffen School of Medicine, the NIH as well as experts from Greece and France. It was an amazing collection of the some of the world's leading experts who came here to hear Hank's story and to discuss better ways to prevent, diagnose and treat the deadly fungal infections, like Zygomycosis, that attack cancer patients like Hank and others, when their host defenses are compromised by treatment or other immune compromise. (more…)

Moving A Dresser

Presidents Day for me did not involve the honoring of our forefathers as perhaps it should have. For some reason it did involve a bit of spring cleaning despite the 6 more weeks of winter promised by Punxsutawney Phil. Maybe spring cleaning is not completely accurate since it also involved putting some Christmas decorations away at long last. I had another special project for Monday in Joe's room. For a while we have been talking about putting a desk in his room so he has a comfortable place to study. Simple perhaps except that Joe had a roommate for almost 8 years and his room as you might expect, was more Hank's than Joe's. For sure, we had painted it and decorated it for Joe since Hank died. But the room still carries the memories of his older brother, the aura of his personality, the birthplace of his nightly dreams. And it still holds his dresser. (more…)

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