A day of gratitude: A year later, family has reasons to be thankful
The Smith and Johnson family has much more to be thankful for this holiday season – a completely different picture of a strong and happy baby boy.
Last year’s Thanksgiving was essentially marred when the centerpiece of the three-generation family, 20-month-old Bailey Johnson of Carson City, became very sick and in a whirlwind of mental anguish for the tight-knit family was eventually diagnosed with neuroblastoma. This is a highly complex, aggressive pediatric cancer that occurs in about 500 children in the United States, the Neuroblastoma Children’s Cancer Society reported this year.
“The experience has made us appreciate what life is really about, and that’s a part of this weekend,” Bailey’s grandmother Christy Smith said from her home near Zephyr Cove. “We have so much to be thankful for.”
Two weeks after last year’s holiday, Bailey’s parents, Kelly and Ron Johnson, noticed their 9-month-old son had developed a spontaneous black eye – a classic symptom of the rare disease.
“We thought he hit himself with one of his toys,” Ron said. “But it never went away.”
Fast forward to Christmas Day, when a lethargic Bailey practically ignored his toys. When he vomited several times, his parents knew something was wrong, and he was rushed to the emergency room at Carson-Tahoe Hospital. There, he was diagnosed with constipation and given medication.
Three days later, Bailey’s doctor noticed on the X-rays that the boy’s liver was unusually enlarged. And an ultrasound showed many tumorous masses their doctor warned could be cancerous. Tumors were found in his eye, shin, chest, skull, liver and bone marrow.
“I was just hoping it was a misdiagnosis,” Ron said. “There’s no way a 9-month-old would have cancer.”
The next day, a CAT scan taken at the Carson City hospital confirmed neuroblastoma. The Johnsons received a tip from a hospital employee whose daughter had the rare cancer to go to University of California, San Francisco Medical Center for treatment.
In five hours, the Johnsons met a team of specialists who whisked Bailey off to receive a dose of chemotherapy and steroids to reduce the swelling of one of the tumors that was potentially compressing a nerve.
“It was nice to hear it was something that could be treated,” Kelly said.
Bailey underwent a bone marrow aspiration – a procedure that sucks out the marrow – along with a liver biopsy. By then, Bailey’s liver bulged so much, it sagged down to his pelvis.
“It all happened so fast, we were in a state of shock,” Ron said.
From January to July, Bailey went through eight rounds of chemotherapy and responded well. In the first round, the tumor in the eye disappeared. And by the time he was finished with all the chemo sessions, the tumors had reduced to half their size.
Still, the medical team recommended surgery.
“They said the tumor in the chest looked encapsulated, like they could go in and cut it out,” Kelly said.
With that, Bailey endured another surgery in mid-August to take out the primary tumor and use a special radiation procedure to kill off any stray cancer cells.
Christy found herself negotiating with God to bless her grandson with good health. “I’d say, ‘I’ll go today. Just take away the cancer from him.’ But we all said that,” she said.
“I was hysterical. It was hard to see him that way with tubes coming out of every which way,” Kelly said.
Ron spent a lot of time holding his son’s hand. Five days later, the family returned home.
“This causes a lot of divorces in couples. I think (the experience) has strengthened our relationship,” Kelly said.
Her mother commended her daughter and son-in-law for how well they coped with the tragedy.
“Things are looking good for Bailey. We’re very pleased with his recovery,” UCSF pediatric oncologist Dr. Anu Banerje said. “When he first came to us, the tumors were so widespread, we felt there was a chance surgery couldn’t help.”
Plan B involved a bone marrow transplant, which is extremely challenging to a child this young.
Banerje explained how neuroblastoma arises from a primitive cell that is “very aggressive and vastly more common in children.” It accounts for about 8 percent of all pediatric cancers in the United States, according to the National Cancer Institute. Two-thirds of the cases are presented in children younger than 5 years old. The disease originates in the adrenal medulla or the paraspinal sites where sympathetic nervous tissue is found.
Bailey was diagnosed with Stage IV, the advanced level of the disease.
“We know a lot more about cancer now than we ever wanted to know,” Bailey’s grandfather Tim Smith said, who extended a nod of gratitude to all the well-wishers in the community.
A dozen of Ron’s mother’s coworkers even donated blood for Bailey’s transfusions, and the grandparents shared a list of local people and organizations who made monetary donations.
“It’s been so helpful to me to have so many people in the community praying for him,” Christy said, rattling off places across the globe where positive thoughts were sent Bailey’s way.
The family pondered how Bailey will have such a tale to tell his children someday.
“We’ll never forget it,” Kelly said, adding she “hated Christmas” until this year. “But I thought God gave us all the bad news in 1999.”
This year, the family could be blessed with a brother for Bailey on the same day he had his first surgery a year ago.
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