Cancer strikes boy again
Carson City resident Bailey Johnson turned 2-years-old March 11 – less than a month later he was diagnosed with cancer for the second time in his short life.
In late December, 1999, a nine-month-old Bailey was diagnosed with neuroblastoma. His cancer was ranked Stage 4, the most advanced level of the disease. There were tumors in his eye, shin, chest, skull, liver and bone marrow. His parents, Ron and Kelly Johnson, turned to University of California, San Francisco Medical Center for treatment.
In a span of about eight months, Bailey went through a bone marrow aspiration, liver biopsy, eight rounds of chemotherapy, surgery to remove the tumor in his chest and radiation treatment.
Though excruciatingly difficult on the child, as well as his mother and father, the treatments worked. By Thanksgiving, the Johnsons and Kelly’s parents, longtime Zephyr Cove residents Tim and Christy Smith, had a lot to be grateful for.
But last month the happy Johnson household, now blessed with the addition of 4-month-old Cameron, turned somber once more.
On April 5, Bailey went in for a routine check-up.
“They found evidence of cancer, did some more testing and confirmed he relapsed,” Tim Smith said. “Right now he is showing cancer on his skull, under his eye, in his chest and in his abdomen.”
An older, more aware, more scared Bailey underwent surgery April 6 back at UCSF Medical Center. Doctors reinstalled a broviac, or catheter, directly into his heart.
“It’s a way to not have to poke him all of the time,” Tim said. “He started (chemotherapy) April 6. He is now getting four to five times the dosage he was getting before.”
Bailey likely will go through five sessions of chemotherapy – either 72 or 96 hours each, a bone marrow harvest, surgery to remove any remaining tumors chemotherapy did not destroy, one to three weeks of radiation treatment and a bone marrow transplant, which involves another eight days of chemotherapy.
“He’s only got about a 30 percent chance of survival,” Tim said of his grandson. “The treatment may kill him. It’s the Catch 22. If you don’t treat the cancer, the cancer kills you, but then the treatment puts you in such bad shape, it could kill you too. Because (Bailey) relapsed, he is now what they call a high risk patient and as a high risk patient, the treatment is so aggressive. After one round of chemo, he has been in the hospital for two weeks, just with the complications of the chemo.”
Tim said his daughter and son-in-law are coping, all things considered.
“Ron and Kelly are holding up,” he said. “Most people can’t figure out how they’re holding up as well as they are but people have asked us, ‘How do you deal with this?’ Because we have to. We don’t have a choice.”
Ron’s family, residents of Pleasant Hill, Calif., are taking care of baby Cameron while Kelly is at the hospital with Bailey. Ron, a firefighter, travels to San Francisco on all of his days off to spend time with his son in the hospital. Christy splits visits to San Francisco between Bailey’s hospital room and helping with Cameron.
“Bailey’s relapse has put an enormous strain on all of us,” Kelly Johnson said. “It has literally torn our family apart. I have only been able to see my 4-month-old son, Cameron, two times in the last two weeks. Ronnie hasn’t seen Cameron in over a week and is back in Incline at work for a few days.
“Fortunately we have a very strong family which has pitched in to help. My parents had Cameron the first week we were in the hospital, then he came down to the East Bay to stay with my in-laws so my mom could come stay with me in the hospital to help while Ronnie went back to work.”
If Bailey survives the cancer and treatments, he may lose his hearing and suffer heart, kidney and liver damage.
“He is probably going to lose his hearing. That’s almost automatic,” Tim said. “It is likely it will be treatable with a hearing aid. The rest are just possibilities. They are things that will be tested after all of this is over. But if the bone marrow transplant doesn’t take, then that’s it. He will die.”
In addition to severe emotional trauma, the Johnsons also are faced with major medical bills.
“The first time around, without the transplant, I’m pretty sure it approached a million dollars,” Tim said. “We’re looking at at least a million dollars this time. Fortunately, health insurance is paying for a vast majority of it but nothing ever pays all of it.”
Kelly had to quit her job to be with her son. Travel costs combined with eating every meal out or in the hospital cafeteria add to the financial burden surrounding Bailey’s condition. There is an account set up for Bailey Johnson at the Colonial Bank on Kingsbury Grade. Checks may be made out to the Bailey Johnson Cancer Fund. Donations of any size are appreciated.
“We have only begun the long road we have ahead of us and will do whatever it takes to get our angel well again,” Kelly said.
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