Photo above: Jonathan Sullivan huddles with BA football players at a recent game. Photos by Kat Walsh.
By Kat Walsh
“Your child has cancer.”
“The hardest words any parent will ever hear,” says Jonathan Sullivan. “It is still hard for me to hear myself say it.”
Jonathan and his wife, Nikole, heard those words on Jan. 4 when Tash, their 8-week-old son, was diagnosed with a form of infant leukemia called Infant Leukemia, B-Cell ALL.
Their nightmare started a few days before Christmas 2015 when Tash started vomiting at night. Then six days later came the unthinkable diagnosis.
“How many other cases of infant leukemia have you seen?” the Sullivans, who were living in Orlando at the time, asked the head of pediatric oncology at Florida Hospital. The answer: “Two.”
And they had never had a patient as young as Tash.
“If this was your child what would you do?” they needed to know.
“St. Jude’s is the best, I would go to Memphis.”
Tash was accepted at St. Jude’s the next day.
St. Jude’s
“Today is Day One of treatment. Words I never thought I would be using to describe the life of one of my children,” wrote Nikole on Jan. 7 on TashTuff.blogspot.com, the blog she keeps as both an outlet for herself and a checkpoint for family and friends.
Although it was Tash’s first day in the hospital, the Sullivans, who also have two little girls, were no stranger to St. Jude’s. The couple met while working for the Marriott in Memphis, mere blocks from the hospital.
“We volunteered together at St. Jude’s, even dressed up for their big Halloween event,” said Nikole. “With Jonathan dressed as Spiderman, we walked these halls – even the floor our son is now on – trying to bring a smile to the face of young patients. I never dreamed we would be on the other side of that door one day.”
Moving to Beaufort
Jonathan’s career with Marriott required the family to relocate every few years, but such a lifestyle was no longer an option.
When the opportunity to work at the Beaufort Inn became available in June, Jonathan brought the girls to town for a visit from Orlando.
After a tour of Beaufort Academy and a positive playground review by their daughters, Sloane, 4, and Scout, 3, the Sullivans were convinced. Beaufort would now be home.
Still, the transition has been rough.
With their mother in Memphis with Tash, Sloane and Scout haven’t seen her since January.
With such extraordinary challenges to manage, Jonathan says it is easy to feel like a failure as a parent.
“We have put our kids through so much and we are stretching them. They are supposed to just be able to just be kids.”
Beaufort Academy
As Sloane and Scout settled into their pre-K programs at Beaufort Academy, their new school’s coach geared up for the annual fundraiser. As a member of the East Carolina University football team, head football coach Scott Richards competed at the Liberty Bowl in Memphis. Part of that experience was a visit St. Jude’s.
“For me and my teammates, it was life-changing,” said Richards. “It gave me an appreciation of what real battles in life are, and what real warriors those kids are.”
Two decades later, when a school fundraiser, Touchdowns Against Cancer, combining high school football and St. Jude’s, came across his desk, Richards jumped at the opportunity.
An email went out to the BA community explaining the fundraiser and asking for donations. The next morning, there was a reply from a new BA family, the Sullivans.
“Unbeknownst to us, they were there. They were experiencing this,” said Richards. “It really hit home.”
So, Beaufort Academy raised $505 per touchdown, leading the entire nation in most dollars raised per touchdown, and raising a total $6,571 for St. Jude’s.
Lisa Gallagher, director of Communications and Special Events, marveled at Beaufort Academy’s strong and supportive community.
“I didn’t think we would be No. 1, but I was not surprised at all.”
At the last football game of the fundraiser, Jonathan, Scout and Sloane joined Headmaster Stephen Schools, Richards and the football team on the field during halftime.
The team presented the family with a football jersey, with Tash printed on the back and signed by the entire team.
“The jersey may be too big for him now, but Tash’s strength and courage fills it now,” said Schools.
Meanwhile, the magic words – “release date” – are now part of the Sullivan’s vocabulary.
“Coming home is a possibly for Tash around Oct. 31,” says Jonathan.
A release date isn’t remission – it’s a whole different set of challenges, “but we are incredibly excited to deal with those challenges. It’s a light at the end of the tunnel.”
For more information on Touchdowns Against Cancer, visit touchdownsagainstcancer.com.
