Bailey’s story: 12-year-old medical miracle’s journey
INCLINE VILLAGE, Nev. – On Christmas morning, 1999, Kelly and Ron Johnson planned on celebrating their first winter holiday as a family with their 9-month-old son, Bailey.
What should have been a day of joyous celebration quickly transformed into a nightmare.
Bailey woke up with a swollen and unusually hard abdomen. The Johnsons rushed their son to a doctor, and after a series of frustratingly misleading diagnoses, the new parents learned the horrifying truth – their seemingly healthy infant was riddled with deadly cancerous tumors.
He was diagnosed with stage four neuroblastoma – the most common cancer found in infants – which originates in the nervous system and graduates to other parts of the anatomy, Kelly said.
Bailey had large tumors on the left side of his skull, in his liver, in his right eye and in his chest. His bone marrow was completely full with cancerous cells.
“The doctors told us that it was unlikely he would live through the night,” Kelly said. “The best-case scenario is that he would be paralyzed and not make it to his first birthday. The doctor then gave us the choice of spending what remaining time we had left with Bailey at home or start chemotherapy.
“We decided to get started.”
The doctors – thankfully – were wrong. Bailey made it to his first birthday. In fact, now he’s a normal healthy 12-year old boy who attends sixth grade at South Tahoe Middle School and helps coach the school’s hockey team.
The road was not easy. After Bailey and his parents witnessed the first remission of the lethal disease, it came back – twice. Bailey endured a bone marrow transplant, eight major surgeries and numerous minor ones.
“He’s been a fighter since day one,” Kelly said.
Bailey has been cancer-free for seven years.
In looking back at the arduous journey, Bailey’s parents are overwhelmed by the support they’ve received from family, friends and community – and in some cases, complete strangers.
“I don’t have words to describe how amazing it all was,” said Ron, a member of the North Lake Tahoe Fire Protection District in Incline Village. “Someone from San Francisco, who we didn’t even know, drove all the way from up here to donate bone marrow.”
The random acts of generosity didn’t stop there.
Ron had only been on the job at NLTFPD for three days in 1999 when he received the bracing news about his son’s health. Immediately, his colleagues at the fire district donated their vacation hours and sick pay so Ron could be with his wife and ailing son.
“Since getting all of this support, I’ve tried to become more involved in giving back,” Ron said. “Whether it’s blood drives or pancake breakfasts I just try to give a little back to the community – to pay if forward.”
For his part, Bailey doesn’t often think of his turbulent medical past. When asked if he gets afraid when thinking back upon his travails, the 12-year-old replied with a casual shrug:
Kelly and Ron said they look forward, but admit that anytime Bailey complains of pain or says he doesn’t feel well, they fear the worst.
“When he says his leg hurts, my stomach drops,” Kelly said. “(The possibility of cancer) is always at the back of my mind.”
Nevertheless, the grateful parents remain positive and look forward.
“I always think positive,” said Ron. “Throughout the entire process I never believed it would end badly. I never gave up hope.”
Ron and Kelly are also able to glean positive consequences from the harrowing experience.
“It’s brought our family closer together,” Ron said. “We have a different outlook on life. We don’t sweat the small stuff.”
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