Eight weeks after being hospitalized for treatment of a life-threatening cancer Henry Neligon’s parents explained to him what his diagnosis was and he immediately thought about how he could help other children in similar situations.
“I wanted to help kids with cancer,” said the 8-year-old Madison resident, at home and currently in remission.
“We should have a bake sale,” his mother, Jessica Neligon, recalled him saying to her as he waited at Children’s Hospital of Philadelphia, or CHOP, for a stem cell transplant.
Henry Neligon was admitted to Yale New Haven Children’s Hospital, Nov. 20, 2024, with what presented like a stomach flu. Blood tests and a subsequent bone marrow biopsy confirmed he had Juvenile Myelomonocytic Leukemia, or JMML, “a rare leukemia that occurs approximately ten times less frequently than acute myeloid leukemia in children. The annual incidence is about 1 to 2 cases per 1 million people,” according to the National Cancer Institute.
Ten days later, the then 7-year-old’s “body went into what they call a blast storm,” said Jessica Neligon.
“His cancer onset was so severe and sudden and aggressive, he had a stroke,” she said. “He actually was unconscious and on every single machine you could fathom.”
“He was completely unresponsive for days in the PICU,” she said. “He was on full life support. He was on a full breathing machine.”
“All of this was happening,” she said. “You could not have had a sicker kid, but he somehow pushed through and we credit LEGOs to that.”
She said after he was out of the PICU, after the stroke, he had to learn to walk and talk again.
“He was in such a state, and he didn’t smile for a very long time, his brain was waking up again because he had gone through so much trauma,” she said. “The only thing that actually gave him motivation after all that initial horror, was LEGOs.”
“He got his dexterity back because of LEGOs,” she said.
Jessica Neligon remembers one of the doctors said, “it was a small miracle that he made it alive out of the PICU.”
In January, Henry was taken to CHOP for a stem cell transplant.
“Fortunately, and miraculously, he responded incredibly well to chemo, and he survived and went into remission but then needed a stem cell transplant because JMML has such a high relapse rate,” Jessica Neligon said in a text. “The transplant was his only chance at a ‘cure.’”
The family, including 4-year-old Willow Neligon, moved to Philadelphia for 8 months while Henry received both inpatient and outpatient medical treatment at CHOP.
It was while he was an inpatient at CHOP that this second grader at the former Jeffrey Elementary School in Madison took to his mother’s Instagram account, @thelegohenry, and made the announcement about the bake sale.
“I started a bake sale at Jeffrey School and it’s happening tomorrow so bake something or donate money,” he said, on Feb. 10. “If you want to make kids happy you should do this, because I will be happy if you do.”
The baked goods poured in, followed by eager customers.
The sales raised $17,000 and when combined with an $8,000 private donation, Henry’s bake sale raised $24,000.
Of this, $2,000 was donated to the Toy Closet Program, started in 1993 by WTNH News 8 anchor Ann Nyberg.
The remaining $22,000 was used to fund the newly created Bedside Builders program within the Yale New Haven Children’s Hospital Child Life Services.
There’s no ‘poking or prodding’ by doctors allowed in this room at a CT hospital.
“He was one of those kids that would do LEGO whenever he could possibly do it, so when we had this opportunity, when the family donated, we decided to utilize it for a program that could reach more kids and have that same effect for them, as well,” said Toni Crowell-Petrungaro, Child Life program director.
The specific program had been on the department’s wish list and that, combined with Henry’s passion for all things LEGO was the impetus to purchase a large rolling toolbox and fill the multiple drawers with free building, color-sorted LEGOS and wheel it from bedside to bedside to engage patients in LEGO building.
“Kids can build whatever they want and however they feel that day,” said Tyler Mahoney, gaming and technology specialist at Child Life.
This program, said Mahoney, is “a little more personal and a little more one on one” than building with a LEGO kit.
“It brings a little bit of normalcy to a hospital stay and a little sense of community,” he said.
Crowell-Petrungaro said LEGO building allows children to “build up their stem skills that they would be doing at school by building and creating and constructing things.
“So, we’re trying to help build up their skills, as well, too and maintain some of that while they’re going through the treatment,” she said.
“I’m super happy we funded the LEGO program that Yale got off the ground,” said Henry Neligon.
On the day of the bake sale the second grader was there, at Jeffrey School, via zoom.
“I just feel blessed that I was a part of the process, the minimal way that I was,” said Becky Frost, former principal of Jeffrey School and current principal of Madison’s Neck River Elementary School.
“It was literally Henry’s idea, it was the support of the community, our PTO that really kind of rallied everybody, in Henry’s name, to make it happen,” she said. “It was just a joy to be a part of it and watch it all unfold and support it.”
The family felt the love from the community.
“We are so grateful,” said Jessica Neligon. “He was sent gifts; he was sent cards. The kids in his school were sending so many cards, and I hung it all over his room.”
“We just have boxes and boxes of cards,” said her husband, Chris Neligon.
These parents believe their son fought so hard “because of his love for LEGOs, the love that he felt and the support that he felt around him.”
A request for comment was sent to the LEGOS company.
Being there for their son was important, Jessica Neligon said. He was never alone when hospitalized.
“You summon every ounce of your being and every hardship you’ve ever been through to be there for your child,” she said.
“It was a very, very, very, very close call and very scary,” she said, sitting in her family dining room, the table covered in LEGOs.
“I went through all the stages of grief,” she said. “The doctors were saying that he had cancer and I pushed back and I said, ‘No, that’s not possible. He can’t have cancer. Are you sure you didn’t look at this? Are you sure you’re mistaking it for something else?”
“So, the denial and then the absolute sobbing,” she said. “Everything that you can imagine, but then you have to be strong and not do that in front of your child.”
Chris Neligon said it’s hard to believe what the family has been through and his son is home and cancer free.
“Literally, on Dec. 9, last year, I didn’t think we were going to be here,” he said. “It was so bad. He was pretty much on life support.”
“Now to be home, it’s just incredible,” he said. “For me, it’s incredible, but it doesn’t feel real in a way, still.”
Child Life Services at both Yale and CHOP were a great source of comfort for both the family and Henry Neligon and “part of the reason, in my opinion, Henry thrived,” said Jessica Neligon.
She said their role is “to literally hold hands with the child and walk them through each step, help prepare them for what they’re going through and be their friend and mentor.”
“It was a relief to me because I didn’t know what was going on all the time…it was a load off of me, as a parent, just to feel that there was this advocate, this person for my son and I can take a breath,” she said.
Crowell-Petrungaro said this is the exact reason they exist.
“We really strive to help kids still be kids when they’re in the hospital and we know it takes more than medicine to help them feel better and get better and just have a more positive outlook, so we integrate play into everything,” she said.
“We have kids that come back and forth a lot, to the hospital, and they will remember, ‘Oh, I’m coming back to play LEGOs’ not ‘I’m coming back to get my chemo treatment,’” she said.
“Really helping that be the last thing, positive memories, of what they had while they’re undergoing through their treatment or their reasons for being hospitalized,” she said.
Jessica Neligon said the family is thrilled about the new program and hopes that someday it can be in more hospitals.
This whole program, we’re so proud of it,” said Jessica Neligon. “We’re so proud of him. It was his brainchild.”
Sarah Kyrcz can be reached at [email protected]