All Children's Hospital Telethon

Will's Story - 2011 All Children's Hospital Telethon



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There might be plastic bowling pins lurking behind the door, ready to fall and trigger a laugh attack. Or a Nerf basketball tossed your way for a quick threepoint shot.

"If there is one thing I want to come out of this," Will's mom, Jill, explains, "it's that I don't want leukemia to steal his childhood."

It's an understandable goal. Will was diagnosed last December with a somewhat aggressive form of leukemia called T-cell ALL.

"ALL or acute lymphoblastic leukemia, is the most common cancer in children," explains Gregory Hale, M.D., Director of All Children's Pediatric Hematology/Oncology Program. "But there are different types of ALL, based on which type of white blood cell is affected. B-cell ALL is the more common-and most curable.

"Having said that, there's room for all outcomes to improve. We don't have a 100% cure rate for any of these cancers. And that points up the importance of research, especially for T-cell ALL. Since it's less common, there are fewer patients to study and it can take longer to do clinical trials that are key to new therapies. Will is helping to advance research by taking part in our clinical trials." The treatment protocol for boys with T-cell ALL lasts three-and-a-half years.

That's almost another lifetime for four-year old Will.

"It is a long time," mom says. "And while a lot of it will have to be spent in the doctor's office or infusion clinic or in the hospital, the rest of it needs to be as normal as possible."

"Normal" is a good description for Will's first four years. Always a healthy playful kid, Will experienced a sudden growth spurt the day before Thanksgiving 2010, when mom says he grew an inch literally overnight. "After that," she says, "he complained of some pain in his shin. But we just attributed it to growing pains."

With a cardiologist and a nurse for parents, Will was in good, watchful hands. A week later, he developed a fever and some pink freckles on his tummy that mom noticed during his nightly bath. The freckles spread to Will's chest the following morning, and Doctor Dad was immediately on the phone with Will's pediatrician. Blood was drawn and rushed to a nearby lab. Will's family got a phone call late that night from the pediatrician, giving them results that had been checked and doublechecked out of sheer disbelief.

"He said-I can't tell you where to take Will," mom recalls, "but if he were my child, I'd take him straight to a children's hospital.

"We passed four hospitals on our way from Brandon to All Children's that night," mom says. They got the diagnosis at 2 A.M. on December 9, 2010-"for this family, THAT is a day that will live in infamy."

But even that day had an unexpected bright spot.

After many tearful hours, there was a knock at the door of Will's patient room. A special visitor was here to see patients and families. Would Will and his parents like to meet Tampa Bay Lightning star Vinny Lecavalier?

Will's dad, who grew up playing Canadian pond hockey, could hardly believe it.

"Vinny was so kind and gentle with Will-that created a special memory for us and gave us such encouragement," mom reflects. "It also gave us a chance to thank Vinny for his commitment to kids with cancer, for pledging to create this center at All Children's Hospital where our son was so suddenly a patient. He's the reason there are HEPA filters and positive pressure rooms that are so important to these kids."

But it's more than first-class medical care in a state-of-the-art facility that matters to Will's parents. "I was so impressed by the family atmosphere of All Children's," mom confides. "During that first hospital admission, Will's dad and I never had to leave his side. The rooms are designed so that we can stay, and the staff supports us being there as much as we can."

Will's parents have the added insight that comes from their own medical careers-both a blessing and a curse, mom says. "We're pretty comfortable in a hospital setting. But we also immediately know the ramifications of what our son's care team is saying about his diagnosis. "It didn't take long for us to research and understand the importance of protocol milestones like the end of the chemotherapy induction phase-Day 29 of Will's treatment. That's when the experts look at his blood and stratify the risks of his particular leukemia. We had so many people praying for good news on Day 29!

"I remember the moment Dr. (Kelly) Sawczyn called to say Will was stratified as 'low'-and I'm so embarrassed-I literally screamed in her ear over the phone! As I was apologizing, Dr. Sawczyn laughed and said-it's okay, we LOVE delivering good news!"

With the expert care and support of his All Children's care team, Will and his family are hoping for lots more good news ahead.



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