Toby Remains Positive while Fighting Medical Challenges

Toby and his parents.

Toby with his parents Amy and Rob.

Longtime Patient Receives Treatment for Blood Clots in Our Thrombosis Center

Toby Schry has been fighting his entire life. In fact, the fight began before he was born.

An early brush with death occurred while still in utero when a sepsis infection nearly killed him and his mom, Amy. Both survived, but things didn’t become much easier for Toby, who was born premature and was constantly in and out of the hospital with various ailments.

Amy found herself at odds with local doctors near where they lived at the time in Georgetown, Ky., arguing that something was wrong with her baby. Toby never left the house, yet was constantly sick.

“It was one thing after the next and they [doctors in Lexington] were wanting to just explain things away. But something kept telling me, this isn’t all of it. I don’t care what the reasoning is, something is up and we need to fix it,” said Amy.

“I stayed vigilant and followed my gut and advocated for the proper care. And that led us to Cincinnati Children’s.”

At 18 months old, Toby became a patient at Cincinnati Children’s.

“It was only when we came to Cincinnati Children’s that Toby was finally diagnosed with immune deficiency,” said Amy, recalling their early visits with Neurology. “It then was one diagnosis after the next and [his doctors] said, ‘Something is connecting all of this.’ ”

Getting Answers to Important Questions

For years the family would commute from Lexington to Cincinnati, eventually moving to nearby Independence, Ky., a few years ago to be closer to Toby's specialists at Cincinnati Children’s. Where before there were only questions and concerns, the family now has answers to Toby's many medical conditions. 

Doctors had confirmed what Amy had long suspected — that the extensive background surrounding Toby’s health couldn’t be possible without something pulling it all together.

“It was the really great doctors at Cincinnati Children’s who didn’t stop looking for the link. And they found it when he was diagnosed with mitochondrial disease,” said Amy. “I remember sobbing in the car after learning the news. And then I decided that the scary prognosis would not be our reality. I went into fight mode.”

Getting the “mito” diagnosis was devastating news, but also somewhat of a relief to have an answer, said Amy. However, that's when new ailments began popping up. 

“From then on, for several years, I constantly had one huge thing pop up every year,” said Toby, 17. 

Discovering a Genetic Predisposition to Thrombosis

Among the most concerning for Toby and family is his ongoing treatment for thrombosis (blood clots).

According to Toby's primary hematologist, Cristina Tarango, MD: “The clots have gotten better over time but require continued treatment with anticoagulation to prevent recurrent blood clots.”

One, in particular, stretches from the right side of his brain, down behind his ear where it enters the right jugular vein. He has also had blood clots in the veins of his arms. 

A genetic predisposition to thrombosis, called factor V Leiden, is one reason Toby is at a higher risk for blood clots. Factor V Leiden can increase the risk of thrombosis by five to seven times higher than the general population.

As if that’s not enough, Toby is also at a higher risk of thrombosis due to inflammation from his inflammatory bowel disease. He’s also treated for Crohn's disease.

Amy jokes that even as a patient at Cincinnati Children’s, where all types of rare and different conditions are treated, Toby still stands out for his uniqueness.

“He has had some absolutely difficult, scary, crazy, over-the-top challenges that are way outside what anyone expects,” said Amy. “He always has his doctors and nurses on their toes and scratching their heads. But also there's this crazy, over-the-top good that we can’t explain.” 

Doing Well, Enjoying Life

Today, Toby is doing well as his medical team continues to treat him with anticoagulation and monitor his condition through testing and regular appointments in our Thrombosis Program.

“He’s a great kid who’s gone through a lot but still is a kind and pleasant individual that works to keep himself healthy,” said Tarango. “Toby has a wonderful attitude, takes so much of what he needs to deal with in stride, and has fantastic support from his mother.” 

Toby knows what he’s fighting, but it won’t disrupt his enjoyments in life either. He likes spending time with family and friends, trap shooting and cheering for his favorite football and basketball teams at the University of Kentucky. He's also a big fan of the Lexington Legends baseball team and Middle Tennessee State University, where his uncle coaches football. 

Playing video games online with friends is another favorite activity in the times of COVID-19, said Toby. Regulars include Call of Duty, Madden NFL and Minecraft, but he considers the 1981 classic Galaga his all-time favorite.

“I can keep in touch with my friends and do things that we all enjoy. But from our own houses and we can be safe,” said Toby.

“We just are so grateful for [Cincinnati] Children’s. That as bad as COVID has been for so many families, this quarantining has kept us healthy,” Amy adds.

“With the strict rules we’ve had to follow, they have helped keep Toby healthier in general, even though there is a level of stress and fear that goes along with this virus. Because if Toby gets it, the odds are that it would be pretty severe. We’ve been incredibly cautious.” 

“I feel good. I feel normal,” Toby adds, pointing out that the online schooling he’s been accustomed to for years, is the new reality for many students now.

“The bottom line is we don’t truly know why (he’s doing so well), but we’ll take it,” said Amy. 

(Published March 2021)

Toby tough.

Toby continues to fight. He is thankful for the support of friends and family, in particular his mom, Amy.  “The reason I’m doing as well as I’m doing is because mom has fought for me every step of the way.” 

Toby all dressed up.

Despite his conditions, Toby is often smiling. His advice for staying positive: “Remember that you [as a patient], in reality, don’t have control of much of the situation. Live in the moment and live your best life. I focus on the happy and the good in life. And the blessings.”

 

Toby and mom.

Toby battles a variety of conditions. His mom, Amy, feels it's very important to be an informed parent. 

“You have to be informed. I wouldn’t claim to know anything at all about anything medical unless it’s something that Toby has experienced or something that I needed to research and then I become an expert in it — because it’s my kid.”

 

Toby with UK wildcat mascot.

Toby shares a moment with the University of Kentucky Wildcat mascot at a game prior to COVID restrictions.