The wallpaper in the lobby of St. Joseph’s Children’s Hospital in Tampa is of crystal blue skies dotted with perfect white clouds. It goes up, up, up, until it touches the skylights in the lobby’s ceiling.
On Saturday, July 23, mid-morning light basked the clouds and a hanging parachute mobile with warmth. Looking up, all was still. All was peaceful.
On one of the lobby’s plush blue couches, Cynthia Diaz pulled her feet up and tucked them beneath her. The light that poured in hit the silver necklace the 42-year-old was wearing. It glimmered as she ran it back and forth along a delicate chain. It, too, is supposed to bring her peace, as a present from a close friend.
Lately, the cloud-covered wallpaper is the closest Cynthia Diaz has gotten to the outside world.
Her time is spent in a sterile hospital room with her 2-year-old son, Jaxon. The toddler, beloved by family and friends for his infectious smile, stylish ‘baby bun’ and legendary fist bumps, is facing something he can’t even pronounce: Leukemia.
The Diagnosis
For the Diaz family, Friday, July 1, started what would become a tumultuous, whirlwind of a month.
The funeral for the family’s longtime friend, Jean Laseter Hehn was on July 1. The Diaz’s older son, 10-year-old Joe Thunder, has been best friends with Hehn’s grandson, Wellington, since the two were 6 months old. A close relationship formed between the two families until Hehn died in mid-June after losing a two-year battle with cancer.
“I think the word ‘cancer’ is really scary,” Cynthia Diaz said. “I watched Jean go through two years of treatment and then say goodbye.”
One day before the funeral, Jaxon, who has Down syndrome, had spiked a fever. By the next day, his symptoms had worsened. With blisters covering his normally baby-smooth skin, Cynthia Diaz realized Jaxon had hand-foot-and-mouth disease, a common virus usually found in children under 5 years of age.
Though the infection fades away on its own, Jaxon didn’t get better. The Diazes took him to Urgent Care, where they were told he might be anemic.
“I knew something was really wrong,” Cynthia Diaz said. “He had been so lethargic.”
The family’s pediatrician squeezed them in for an appointment Tuesday, July 12, to do blood work. On their way home, they got a call.
Come back. He needs to be admitted right away.
Jaxon needed a blood transfusion. His red blood count was abnormally low. Leukemia cells had been discovered in Jaxon’s blood sample. It was the first of many times the family would hear the word.
“It was the worst thing,” Cynthia Diaz said. “It was just devastating.”
Jaxon went in for a blood transfusion. Doctors and nurses circled through the family’s hospital room, checking his vitals every hour for 12 straight hours.
Pray For Us, Saint Peregrine
Family and friends were called and told the news. Maggie Hehn, Jean’s daughter, brought Cynthia Diaz one of her late mother’s old necklaces: the silver pendant decorated with St. Peregrine, the patron saint of cancer patients. It’s the one Cynthia Diaz wears every day.
“Maggie gave it to me the first day in the hospital,” Cynthia Diaz said. “I’ve had it since I’ve been here.”
It was something tangible for Cynthia Diaz to cling to as her world turned upside down.
Right away, it brought her a bit of magic: Jaxon had been diagnosed with one of the worst strain of children’s leukemia, acute myeloid leukemia, but, for unknown reasons, children with Down syndrome react better to treatment than children without. The Diaz family entered Jaxon into a research study to further help unveil the connection between leukemia and Down syndrome.
“We are so happy,” Cynthia Diaz said. “It was amazing to hear … he’s the most special baby. It could save his life.”
While the family was able to breathe a short sigh of relief they still face a long road ahead, starting with chemotherapy.
Like leukemia, chemo was another word Cynthia Diaz wasn’t ready for.
Anything to Help Him
Back home, in Plant City, the Diaz family — Cynthia Diaz and her husband, Joe Diaz — are well-known and well-liked for their popular eatery, The Corner Store. With a motto of ‘Eat Well or Die!’ the family serves organic and local grub made with sustainable practices.
A small, organic grocery shop shelves one half of the store. A play area behind the tables is set up for families with children. Daily specials are listed neatly on a chalkboard at the front.
Much of the family’s livelihood is centered around the wellness of others — and they eat what they preach.
The family’s current hospital meals consists largely of food brought in from the outside, comprised mostly of food from the family’s store, Whole Foods and healthy snacks sent over by friends and loved ones.
For the family, healthy habits are a way of life; chemo was never supposed to be part of the organic equation.
But when the act of killing every cell in her son’s body to save his life became a necessity, Cynthia Diaz didn’t think twice.
“Coming from somebody who doesn’t even take a Tylenol if I have a headache, it’s been a shock to give him all these things,” she said. “But he’s feeling better every day. I would do anything to make him better.”
Jaxon’s just finished his first round of chemotherapy. His tiny body has been taking it as well as possible: five days of 24-hour chemo, complete with additional chemotherapies given at various intervals.
It’s the first of five rounds. His cell numbers will bottom out and start to climb again. He’ll start feeling better just before the second round begins.
“It’s a waiting game,” Cynthia Diaz said. “The levels will go down to almost zero, and then we wait for them to go back up. They climb very slowly, and they kind of go back and forth.”
Wednesday, Aug. 10, is the family’s next big day. For Joe Thunder, it’s the first day of school. For Jaxon, it’s the start of his second round of chemotherapy.
Right now, he needs constant monitoring. As he recovers from his first round of chemo, his biggest risk is infection. He’s confined to his hospital room because he refuses to wear a face mask. Gloves have to be worn to open a bottle of sterilizing wipes. Relatives and friends are can only communicate through phone calls and FaceTime.
When Jaxon is finally allowed to leave the hospital, the family will have to move to avoid mold that could potentially pop up in their older home.
“If he were to get infected, he would have to go back to the hospital,” Cynthia Diaz said.
But Jaxon can’t leave, yet. For now, Cynthia Diaz doubles as his mother and round-the-clock nurse. She makes sure he gets his fluids. With tastebuds changing after chemotherapy, Jaxon no longer enjoys the taste of water. She makes sure he eats. She’s the one bringing him comfort, the only one he permits to give him much of his medication.
Jaxon refuses to sleep without her holding his tiny hand.
“I’ve kind of equated the hospital to being a Vegas casino,” Cynthia Diaz said. “It doesn’t matter what time it is, it’s always on.”
With Cynthia Diaz and Jaxon living in the room for the time being, the family has taken lengths to make it as comfortable as possible. One wall has been decorated with balloons. A play mat has been brought in for Jaxon. Cubbies for clothes are set up against a wall. Decorations and reminders of home have been hung to bring a sense of stability in the constant chaos.
“We’re being very cautious,” Cynthia Diaz said. “Some therapy people can come in … but there’s lots of precautions. We’re trying to keep him as germ-free as possible.”
Joe Diaz and Joe Thunder shuttle back and forth between Plant City, Lakeland and the hospital.
With Cynthia Diaz serving as her son’s primary caretaker during treatment, she’s been unable to return to work. When Jaxon was first diagnosed, The Corner Store had been closed for a family vacation. After finding out that he had leukemia, the family wondered if they would be able to reopen at all. Jaxon’s treatment requires almost six months of constant hospital visits and appointments.
The family needn’t have worried. As the news of Jaxon’s diagnosis quickly spread, Plant City came together to give the Diaz family a show of support — the biggest fist bump — they could have ever imagined.
In Their Corner
On Saturday, July 23, The Corner Store was packed with people. The Diaz family was 26 miles away, at the hospital, but there was mail for them at their eatery: cards and donations were stuffed into a box labeled “Fist Bumps for Jax!” Singer-songwriter Benji Padgett emceed over a keyboard set up in the corner. It was a fundraiser for Jaxon.
The store officially re-opened Tuesday, July 19. With the owners away, The Corner Store’s employees came together to make sure business went on as usual.
“They really are doing the day-to-day grind,” Cynthia Diaz said. “I’ve had my crying moments, but we have so much support. The store is like a family. It’s been amazing. They want to keep things as normal for us as possible, and the store is our day-to-day life. The crew rallied and they rallied hard. (The crew) going above and beyond so I don’t have to worry has been amazing.”
The Corner Store has two locations: one in Plant City and one in Lakeland, with a total of nine employees.
The July 23 fundraiser yielded over $400 in cash and check donations. On a YouCaring fundraiser page, donations have exceeded $9,000.
“The response from the community has been amazing, absolutely amazing,” Joe Diaz said. “The feeling of anything
is possible and strength in numbers is real. We’ve had people from our immediate community come together and support us, as well as people we’ve never known join in and support (us). The response has been truly amazing.”
On a Facebook page set up to follow Jaxon’s journey, “Jax Trax,” the family has chronicled Jaxon’s daily life in the hospital. The family was inspired to start the page by Hehn, who chronicled her journey with cancer before losing her battle. Online, the family has received support.
“I’ve been connected to people all over the United States,” Cynthia Diaz said. “Especially with all the hate and ugliness in the world … to see the outpouring of love from all the people for this little boy they’ve never met has been amazing. The community has rallied around him.”
Contact Emily Topper at etopper@plantcityobserver.com.