Imagine taking a 10-month-old baby to the zoo for the first time. Then imagine that the same child had recently been in the hospital for months, undergoing strenuous, risky treatments, chemotherapy and a bone-marrow transplant to bring his immune system up to par.
Phoenix Wilkinson, who lives in the Bay Area but has many family-and-friend ties to the North Coast, was about 2 months old when doctors diagnosed his severe combined immunodeficiency, or Omenn syndrome. The so-called “bubble baby syndrome” is an often-deadly condition that suppresses a child’s immune-system response.
Phoenix had to be isolated away from nearly everybody while physicians battled for his life and future well-being. The baby had the transplant Dec. 30 and, amazingly, was released earlier than expected. He was able to go home from the hospital Feb. 25 because his parents, Coast Union High School graduates Pat and Kristen (Anderson) Wilkinson, were fully trained and experienced in their son’s medical requirements and daily treatments, their home was super clean and sterilized, and the baby could be isolated there from everybody else.
Fast forward to June 9, when doctors told the family that the child’s T-cells (white blood cells that play a central role in cell-mediated immunity) had fully recovered from the disease and the medical onslaught.
“This means that he can fight infection!” mom Kristen exulted June 9 on a family blog. They could “lift precautions and start taking Phoenix out around other people. We don’t have to sanitize our house constantly. We can allow Phoenix to meet all of his family members, even if they have been on a plane, and so much more such amazing news and we are beyond excited.”
Going to the zoo on Monday, June 13, therefore, was a remarkable benchmark for Phoenix and his parents.
“He had a great time!” his happy mom recalled in a phone interview that night. “He was laughing at the giraffes. He loves being outside. We were there for about three hours,” an in-public time span that would have been unthinkable and medically dangerous a couple of months ago.
The child also tasted his first bites of soft-serve ice cream.
“He was all smiles and couldn’t stop laughing,” Wilkinson said.
Phoenix eats just about anything now, she said, and especially loves cheese, meats, sweet potatoes and vegetables.
In the past month, the baby already has had many new experiences, and there are many more ahead for Phoenix and the family that adores him.
“We can go grocery shopping with him now, take him to restaurants. He gets such a kick out of that,” Wilkinson said. “He flirts with everybody. ... You can just tell he’s so interested in everything, all these things he’s never seen before that normal babies have seen since birth.”
She paused and said quietly, “It’s really weird to be normal. We’ll have these panic moments when I’ll see him chewing on a table at a restaurant, and I don’t catch him in time. But it’s OK. It’s not going to kill him. It’s. Not. Going. To. Kill. Him.”
That’s a hard-but-joyous adjustment for a mom and dad who spent weeks and months living in their son’s isolation-ward hospital room — who gave up their work and their social lives and everything else except helping to keep their son alive and being there for him 24/7.
They’ve had the support of many, including North Coast family members such as grandparents Mike Anderson (a Cambria contractor), Kim Anderson of Templeton, Kim and Leslie Eady of Cayucos (who own the Cambria Shores Motel) and great-grandparents Don and Mary Anderson of Cambria.
Hurdles to cross
There will still be constraints, Wilkinson said. Phoenix still needs monthly, three-hour antibody infusions until his B-cells have fully recovered and are functioning.
“This should take approximately six months,” she said. But “after that, he is essentially cured.”
Long-term effects from the chemotherapy include a 70 percent to 90 percent chance that Phoenix will be sterile, but when the boy goes through puberty, doctors may be able to find, harvest and freeze some viable sperm.
Phoenix is apt to have dental problems, including extra teeth that have to be removed and/or the need for braces. He’s teething now, but none have broken through yet.
“He’ll also have a higher risk of leukemia,” Wilkinson said, “and his skin always will be extra sensitive to sunlight and being sunburned. But he’ll have a normal life, play sports, travel, be around anyone.”
So far, Phoenix’s developmental progress seems to be close to normal, according to early opinions from a neurologist.
“In such young children, there’s a concern that the blood-brain barrier might not be completely closed,” Wilkinson said, something that is supposed to happen when a baby is about 3 months old. “The neurologist said he’s about a month behind, but Phoenix was born a month early,” so that sort of balances out.
In fact, Wilkinson went back to work at Airbnb at the end of April, working mornings at the office and from home most afternoons.
The family even got on a plane to go to a wedding recently.
“Phoenix did great,” Wilkinson said. “He’s never been able to meet other kids before. At the wedding, he was just enthralled with the other kids.”
“We’re just treating him like a normal little 10-month-old,” she said with awe in her voice. “It’s not a life-and-death situation anymore. It’s definitely amazing to be normal.”