Ask Jonah Barnett what his favorite drink is, and he'll tell you it's strawberry milk.
Though a tumor at the base of his brainstem has rendered him unable to speak effectively, at only 10-years-old, he's as modern of a communicator as they come. Using specialized software on his iPad, Jonah is able to form ideas and share them with others. A strawberry plus a carton of milk equals strawberry milk.
Using his special spirit, Jonah is able to overcome much more than that. A supportive family and talented team of doctors plus divine predilection equal a miracle.
The journey begins
Jonah's first year of life was fairly normal and aside from a slight drawl and the fact he would choke a little more often than normal while eating, his parents Patrick and Lynice, thought they had another healthy baby boy.
When Jonah went for his one-year check up, his pediatrician saw some troubling symptoms, reminiscent of Bell's Palsy, and ordered an MRI.
Lynice had worked for several years in radiology, and when first laid eyes on the images, she knew something was wrong. Jonah had a tumor in his brain stem, and for a boy so young, the prognosis wasn't good. A specialist in Macon told the Barnett's their second son had four weeks to live.
A grade II astrocytoma is a malignant brain tumor that spreads within the brain like a vine inside of a bush, said Dr. Anna Janss, a neuro-oncologist who works in the AFLAC Cancer Center Blood Disorders Service of Children's Healthcare of Atlanta.
"I call myself a lump-in-the-head doctor; it's a little less intimidating than saying I'm a neuro-oncologist," said Janss, who is used to simplifying and demystifying things for her young patients and their scared families.
When Jonah was first diagnosed, he had a tumor the size of a golf ball. Some of the cells in his brain stem had gotten off track.
"These cells were destined to be the support, or glial cells in the brain, but somewhere along the line as they are cropping and doubling themselves, they accumulate mutations, which are like typos," Janss said. "If you get a big typo, the cell dies. If you get a little mutation or a little typographical error in the copying of the cell, a cell can continue. But if you accumulate sufficient typos in the wrong sports, you end up with a cell that was meant to be something but can never be that. So it keeps on growing.
"It interferes with the cable system that carries all the information to the brain to the spinal cord and the information from the spinal cord up into the brain."
Astrocytomas are nearly always deadly, because as they grow they interfere with more and more systems of the body and cause ever-increasing health problems. The brain stem is so fragile that removal of the tumor is nearly always impossible and treatment itself is difficult.
While these malignant brain tumors aren't uncommon, they're nearly unheard of in a child as young as Jonah.
"I just remember trying to think through all the different scenarios, well what if this, or what if that?" said Patrick, while his wife, "Lynice was like, ‘Lord, give us the four weeks, after that, do as you will.'"
After the four weeks had passed, St. Jude Children's Research Hospital in Memphis, Tenn. agreed to see Jonah. However, there was little they could do. He was too young for radiation and because of the location of the tumor they couldn't do surgery. So they put him on steroids.
The family had bumped up a family trip to Disney World, when they got a call from the hospital where doctors wanted to do a decompression surgery. He went downhill quickly after that, and for the next five to six week he was an invalid.
The family went to Disney World, not knowing what to expect, when a doctor suggested brain radiation, despite the fact it had never been done by that hospital on a patient so young.
"He said, ‘There is a lot of danger involved, but what do you have to lose at that point?' We looked at each other and said, ‘That's right. What do we have to lose?'" Patrick said.
Jonah underwent 30 rounds of radiation over a six and a half week period. Lynice stayed with Jonah, while the rest of the immediate and extended family took turns spending a week with her in Memphis.
After the first week of radiation, Jonah had a shunt put in to relieve some brain fluid, and a week later he was playing video games at Chuck E. Cheese's.
"It was just amazing the turnaround he had," Patrick said.
By the end of the treatment, the tumor had shrunken by 55 percent to about the radius of a nickel.
That unfortunately is where the happy part of the story ends for most children, because on average the tumor begins to grow again after a year, and children can't be given the intense radiation therapy again so soon, Janss said.
Jonah's tumor didn't grow again for nine years.
"I always said we're living on the longest four-week period anyone has ever seen."
A true miracle?
Science and medicine deal with percentages and probabilities. More than 90 percent of children with a grade II astrocytoma will die within 12 to 18 months after being diagnosed.
"But this kid, it didn't happen that way. That's what's a miracle," Janss said, jumping excitedly into the conversation. "This kid, he got treated and he has a lot of issues; he has motor problems, walking problems and speaking problems and hearing problems and still he's so sweet. And for 10 years, he had no evidence of the tumor grow."
As a doctor, Janss knows that there are certain patients who beat the odds. But that didn't prevent her from being truly excited about Jonah's case.
"I'm a scientist, and I can wave my hands and I can find a ton of explanations for things that are not medically expected. But at the end of the day that to me is a miracle. It's just a miracle. It's remarkable," she said.
And for Janss, it's those remarkable, unexpected survivors who give her the greatest joy in her job; those people who are at the very ends of the statistical probability curve.
"Even when I'm dealing with kids with a tumor where my medical expectation is that they are going to die of that tumor, and that's not an easy thing to talk about or to live with, that statistical curve is what gives me a lot of hope. That curve is the mathematical expression of hope," Janss said.
"Even if I meet a kid with a nasty tumor, I know there are kids like Jonah who are out there. They are on the far end of curve and they have survived 10 years plus. There are some kids who have survived even longer. But these types of survivors are few and far between. The kids like Jonah are great because they give me hope for the other kids I see."
While it's easy to focus on what children like Jonah can't do, it's remarkable to realize what they can do. Jonah can feed himself despite partial paralysis of his mouth. He can walk and play Miracle League baseball. He can communicate through sign language and technology and he can show patience, kindness and love.
"He can't talk, but he can hear and he's very bright. He can light up a room," said friend Linda Johnson. "The outcome doesn't look good, but the family has such faith."
Living a full life
Last October, Jonah began having symptoms and doctors discovered the tumor was once again growing.
It's unlikely the tumor will ever be removed, but Jonah is undergoing another long round of chemotherapy treatments at Egleston Children's Hospital.
As they have the past 10 years, the Barnett family continues to forge ahead, living a fuller life, instead of one of fear.
The couple tag-teams events, like 14-year-old Austin's wrestling tournament, where Patrick went to a couple of matches and then traded off with Lynice. They both make sure to spend time with rambunctious Carson, who is the 6-year-old ambassador of the family. They are both active at High Point Baptist Church in classes and bible studies, and they recently fulfilled a lifelong dream of adopting, inviting Anna, not even a year old, into their crowded, busy family.
Despite all of that, they take the time to truly enjoy life.
"One thing, we definitely slow down, try to, slow down and smell the roses more than probably most people would do. More than we used to, because we're living like you should live every day as if it could be your last," Lynice said. "When you've been on that welcome mat of crossing over, you step back and enjoy your day a little bit more."