Scrub. Hug. Play. Laugh. Worry. Start all over again. Scrub.
But mostly, laugh. And always, love.
That’s how most days are for Jessica Pequeno and her 2-year-old son Xavier Pequeno as they wait for the bone marrow transplant in December that she hopes will save him from the rare immunodeficency condition that threatens to end his barely begun life.
So far, all Xavier knows about the medical routine is that he has tubes attached to his chest and that he takes a lot of trips to the hospital. And he knows he can’t go outside much, visit the zoo, travel far or have play dates.
None of this makes much difference to his bubbly young self, though.
At home with Mom and Dad — which is where he spends virtually every hour outside of a hospital bed — Xavier cavorts through his hours like any other little boy, kicking balls, whizzing toy cars, punching iPad games. With his ever-present giggle and undiluted childhood curiosity, he seems to have not a care in the world, which for him means whatever is between the walls of the family town house in Napa or on the grass in their tiny front yard.
You’d never know such a terrifying condition was hovering over his small head from the typical afternoon at the Pequeno house. His parents show no fear.
“Elmo!” Xavier cried as he shoved a toy car fashioned after the “Sesame Street” character across the carpet, making whirring noises. “Vroom!”
“Who’s faster?” his mom called out jovially. “Elmo!” the toddler cried. “Yes!” Jessica Pequeno laughed, and rolled the car back at him.
All the while, Higinio “Gene” Pequeno beamed from a chair as he watched his wife and child play. He’s had drama of his own lately — last spring he tore his knee, and after an operation to fix it he expects to remain on crutches until around New Year’s.
“He doesn’t really know a thing about this sickness thing, and that’s just how we like it,” he said. His wife took a break while Gene fired up Xavier’s iPad and helped him play “Temple Run.” She brushed the hair back from her eyes.
“I feel really lucky that he has the personality that he does,” she said. “He’s just so happy all the time, he keeps our spirits up, too. Because this is kind of a hard thing to deal with.
“But how can you be anything other than happy when you look at this little guy?” she said, watching Gene and Xavier, the toddler humming obliviously along to the “Temple Run” soundtrack. “I mean, really.”
A year ago, it was all a different story.
Gene, 43, worked as an interior design installer, Jessica, 34, worked as a wine industry marketer, and they rented a spacious home with a pool in Napa. Xavier tagged around unreservedly after his older brother, Higinio, 9, and older sister, Maya, 12, and he was about to start preschool.
Then, in October 2014, Xavier was vaccinated against chicken pox — and he promptly got the disease. Medical tests ensued, followed by growing consternation and fears of cancer, and in a few short weeks doctors figured out the boy had IKBA ectodermal dysplasia. It’s an immune system disorder known to have affected only eight other people in the world, all children — and only one has survived into teenage years.
Viruses and infection
The condition means Xavier picks up whatever illness or bacteria comes his way, which means he’s spent five months this year at UCSF hospitals warding off viruses and infections.
A bone marrow transplant is what saved that one child and continues to keep him alive, the Pequenos were told. And fortunately for them, a good match is Xavier’s brother. The operation is due to happen in early December.
But meanwhile, with Gene on disability and Xavier needing constant supervision, Jessica quit her job to stay home, and the family moved in with Jessica’s mother to split rent. As the finances dwindled, they needed help with rent over June and July — which is where The Chronicle’s Season of Sharing fund came in to help.
The rent payments helped the family dig out from under bills and get back to financial stability. Life is stripped down, but ideally suited now for caring for a little boy with a grandma and the whole family around for whatever comes up.
And there’s a lot that comes up.
The entire house has to be vacuumed and dusted twice a day, all the surfaces and doorknobs scrubbed down constantly, hands cleaned every time anyone wants to touch Xavier. The bathrooms must be disinfected as if it were a Marine barracks in training mode.
Xavier’s intravenous catheters — attached to his chest — must be flushed regularly, with daily medications administered by Mom and Dad.
“You get used to it,” Gene said. “You do what you do. And hey, it’s kind of nice that everything’s always clean around here.”
Jessica was the point person for so much of the doctor interaction that she now wants to be a parent advocate in the medical system. “I learned that you know your child better than anyone, and it’s OK to ask questions of the doctors,” she said. “I want to help other parents learn that.”
The other day, with the sun shining brightly, the family took a short break outside on the grass in front of their town house. Xavier had a shirt on that didn’t show his catheters, he had a ball to kick around, and the family dogs — three of them, OK because he was acclimated to them before his immune system declined — yapped happily.
Hiding and seeking
“Go hide, and I’ll do seek!” Jessica said. Xavier put his wee hands over his eyes and stood against a tree. Jessica hid her eyes and stood on the sidewalk. “OK!” she cried, uncovering her eyes — and Xavier promptly toddled off toward another tree, arms waving wildly.
“Hid!” he said.
“There he is!” Jessica said. The boy laughed uproariously and ran to another tree. And then another, with Mom chortling and chasing all the way.
At one point, Jessica paused for breath and stood with her arm around Gene, watching Xavier scamper around the trees by himself. They were smiling, but in quiet moments like this there is worry behind their eyes. They don’t show that to Xavier.
“God sometimes just puts you on the spot to see how strong you can be,” Jessica said. “We get through it. We will continue to get through it. And we laugh.”
Kevin Fagan is a San Francisco Chronicle staff writer. He can be reached by e-mail at firstname.lastname@example.org.
The original article can be found here.