(Az.) — One Arizona dad wants to give immunocompromised kids some of their childhood back by creating a hyper-clean space where they can safely play.
Brad Taylor’s daughter, Lily, was diagnosed with acute lymphoblastic leukemia when she was 3 years old in December 2017. The diagnosis came after the family took Lily to the hospital for what they thought was an ear infection.
“We went into the hospital with an ear infection expecting to get some antibiotics and go home,” Taylor, 41, told “Good Morning America.” “We were told our daughter has cancer at 10 o’clock at night and by the following morning, she was in surgery. That’s how fast it changed my life.”
For the next two and a half years, Taylor said Lily underwent a treatment program that included chemotherapy and she became immunocompromised as a result.
“When Lily would go through chemotherapy, her body would go in and out of a place called neutropenia, which means you have no immune system,” he said.
According to the National Cancer Institute, leukemia is the most common cancer found in children ages 0-19. The main treatment for the disease is chemotherapy, though depending on the case, treatment can include surgery, radiation therapy, targeted therapy drugs, immunotherapy, and stem cell transplants.
“Chemotherapy is going to kill the cancer cells, but it’s also going to kill some good cells along the way,” Dr. Bijal Shah, of the Moffitt Cancer Center, told “GMA.” “For folks who are neutropenic, when those neutrophil cells are low, it sort of unlocks the barriers, so when you’re exposed to infection, it’s much more easy to succumb to that infection.”
Being immunocompromised meant the things Lily could do were heavily impacted, from playing in public spaces to interacting with people outside her home and the hospital to the food she could eat.
“We try to do a lot of things to protect our patients,” Shah said. “Normally, we tell them to avoid fruits and vegetables unless their parents can wash them at home. With meats, it has to be well done — no medium, no rares, nothing. We have to be very careful, even on a fundamental dietary level. And if anyone’s sick, you can’t be around them.”
How Lily’s Pad came to be
The idea for Lily’s Pad came after one particular day in Lily’s cancer journey.
“Lily had no life, so I asked the doctors, ‘We’ve watched all the YouTube videos, we’ve watched all the shows, we’ve played all the games. There’s got to be somewhere I can take her,"” Taylor recalled. “They said, ‘Why don’t you take her on a drive? That way you can at least have her in a confined area."”
While on a drive through a quiet residential area full of nature, Taylor said they passed by what looked like a brand-new park and Lily was “begging to get out of the car” to go play in it.
“By that time, she had kind of learned the rules like we couldn’t go to public places,” he said. “She finally was at her breaking point and lost it. She was throwing shoes at me from the back, just furious that I wouldn’t stop the car. She cried herself to sleep, she was so worked up.”
The next day, Taylor began researching to see if there was a space specifically for immunocompromised kids to play in so that he could take Lily to it. When he saw that there really wasn’t anything available, he decided to make it happen himself.
“I had checked with social workers and they had never heard of anything like it,” he said. “So that’s where the concept of Lily’s Pad was born. I just wanted to give her back a piece of her childhood.”
A healing space for kids to just be kids and a resource for caregivers
One of the hardest things for Taylor, he said, was seeing Lily go to chemotherapy and then have nothing afterward for her to look forward to.
“After the hospital, what do you do?” Taylor said. “So kids have to suit up every single day to go through painful procedures and then to look forward to what? To go home? So we’re trying to give them an opportunity to mentally heal along with physically.”
In addition to the physical changes brought on by chemotherapy, Taylor noted that Lily was affected mentally and emotionally as well.
“My child went from the leader of the pack to a very shy child,” he said. “She never spoke like a child anymore. Her friends and playmates were nurses and doctors.”
On a psychosocial level, the idea of Lily’s Pad is hugely profound, according to Shah.
“When you’re getting this kind of therapy, there’s lots of changes that occur — like losing hair — and you become very conscious of it,” Shah said. “Being able to be in a particularly fun space outside of the hospital where you can interact with others who may be going through similar issues without having to think twice is amazing.”
“My daughter was the only bald one in her school, and that was devastating for her,” Taylor said. “It became a fight every day to get her to school.”
Another of Taylor’s goals for Lily’s Pad is to give caregivers a place to rest and regroup. There will be a parent lounge, marriage and grievance counseling, and information on financial resources available.
“One of the hardest things my wife and I dealt with was there’s no time when the child is not begging for your attention or comfort because they don’t feel good and they’re going through really tough times,” he said. “So this would give parents time to step away from the battle for a minute.”
To protect the immunocompromised kids that will be visiting Lily’s Pad, Taylor said he consulted the medical community on the feasibility of the space as well as safety measures needed to operate.
“We’re having an HVAC system designed right now that’s similar to a hospital so it’s got HEPA filters in it and it’s got UV cleaning in it as well,” he said.
When completed, Lily’s Pad will offer three 90-minute play sessions daily, which parents have to reserve online in advance, with a maximum of 15 kids allowed per session. Kids will be looked after by the qualified nursing students on staff. The facility will be cleaned with Decon7 in between each session, with a deep cleaning in the evening. Masks will also be required.
“We wanted to give kids back a chance to go to the park — a chance to go to a playground,” Taylor said. “My daughter is so excited to be able to open this place and point to the name on the wall and say ‘I’m Lily, and you can beat this."”
Construction on the 5,800-square-foot space was scheduled to begin in April 2020, but was postponed due to the COVID-19 pandemic. Taylor now hopes to finish everything by April 2022, for the two-year anniversary of Lily’s last chemotherapy treatment.
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