Phenix City adoptive parents combat rare cancer with rare faith

He got his first haircut because of brain surgery.

He spent his first birthday in a pediatric intensive care unit.

Seven weeks later, his head, full of hair already, hid any sign that a cancerous tumor was removed. His bright smile belied the battle for his life left raging inside his body.

As 1-year-old Joshua Johnson crawled around their Phenix City living room, his adoptive parents, Chris and Melissa, explained why they want to share their story.

"When we left the hospital -- medically speaking, because we don't know what God's got planned -- we felt like somebody started a countdown timer," Chris said. "It's like whatever we can do, Joshua's time, his life, his efforts, will not be wasted."

Melissa has prayed, "Lord, heal Josh so he can give his testimony about what God has done in his life."

Then she has thought, "But maybe it's us who has to give the testimony."

The terminally ill toddler clung to a visitor's leg to pull himself up as he learned to walk -- and his parents have clung to their faith to pull themselves up as they learn to walk with him.

'Clicking ever since'

Melissa's last name was McMickle when she graduated from the former Tri-County High School in 1994. Chris is a 1996 graduate of Central High. They met through family friends when they were teenagers, dated for 10 years and married 11 years ago.

"It clicked," Chris said, "and it's been clicking ever since."

Chris is a graphic designer at the Columbus State University Coca-Cola Space Science Center. Melissa is on family medical leave from her job as a labor and delivery nurse at St. Francis Hospital. She was named a Nurse of the Year at Doctors Hospital in 2010 -- when she had a miscarriage and fertility treatments failed.

"During all of our trouble to have a baby, my wife is up there helping other people have babies," Chris said. "I must have one of the strongest wives in the world for her to do that day in and day out."

"I've had a pity party," Melissa confessed, "but I just knew each child was put in their life for a reason and one day a child would be put in my life for a reason. It just wasn't my time."

It came the next year.

Taken away

In a way, the Johnsons already feel like a child was taken away from them after the anguish they went through to adopt their daughter.

Melissa and Chris met with an adoption agency in February 2011. They were matched with a birth mother due to deliver in the summer.

"That meant that after five years of trying to have a baby," Melissa said, "God would bless us with one in five months."

They had to wait longer.

After they drove to Florida to attend Sarah Ruth's birth, the mother, who had agreed to the adoption, changed her mind two days after delivery. Chris and Melissa traveled back to Phenix City without a baby and with broken hearts.

"At that point, when they told us we weren't going to get her, I didn't care if she came out with no arms and no legs," Chris said. "I just wanted my girl. We had never been so devastated."

"It was like she had died," Melissa added.

So they asked God for a miracle.

"We begged for Sarah Ruth when we were praying," Chris said.

A week later, the mother changed her mind again, and Sarah Ruth was theirs.

"In retrospect, God removed us from that situation while things got fleshed out," Chris said. "We were never angry at the birth mom."

But they couldn't take Sarah Ruth home yet. She needed a month in the neonatal intensive care unit. It was another experience to prepare them for Joshua's journey.

"We saw the fingerprints of God all over that," Melissa said.

"I think every trauma that God puts you through is another brick in your foundation," Chris said. "Out of Sarah Ruth, we emerged a stronger couple. That may have helped us handle an even greater detriment, which was Joshua's prognosis."

After another birth mother changed her mind in June 2013 -- this time before Melissa and Chris even left home -- they were matched with a mother due to deliver a boy in mid-September. Joshua, however, didn't want to wait. He chose to enter the world Aug. 31.

So the Johnsons missed his birth as well as two urgent phone calls before they saw the text that read, "Your baby is here."

They drove to Florida again. That night, they met their son.

"Joshua was absolutely perfect," Melissa said. " Nothing can stop God's plan for your life."

But seemingly benign symptoms stopped the Johnsons' plans for Joshua.

In mid-June, when Joshua was 10 months old, his parents thought the sporadic vomiting was from a stomach virus. They thought his irritability was from teething. They thought his extra sleeping was from a growth spurt.

Then his gaze appeared off and he didn't want to play as much.

"It was just a gut feeling that something was not right," Melissa said.

They went to their Columbus pediatrician's office Aug. 20 for a 2 p.m. appointment. The day ended with their son being rushed to an Atlanta hospital.

'Unidentified mass'

In the pediatrician's office, Melissa said, "they measured his head's circumference, and it was off the chart."

The Johnsons were sent to Midtown Medical Center for a CT scan on Joshua.

"They said he does indeed have fluid on the brain," Chris said, "but they also were seeing some type of unidentified mass."

"It was a nightmare," Melissa said. "This can't be happening. He was not even 1 yet."

"We're in a surreal state," Chris said.

A neurosurgeon was called in to place an external shunt on Joshua's brain. Before the emergency surgery, the doctor didn't mince words.

"Your little boy is in a very dangerous place right now," he told the parents.

"It was just awful," Melissa said. "I knew it was bad, but I didn't know it was that bad."

"The only thing that saved us at that point," Chris said, "was not knowing how bad it really was."

A half hour later, which the couple said felt like an eternity, the neurosurgeon emerged and asked the parents to meet with him about their son. Joshua needed to be airlifted to Children's Healthcare of Atlanta at Scottish Rite Hospital, but storms meant they had to settle for an ambulance.

"This went from us going to the doctor and thinking he had an ear infection to all this," Melissa said.

"Every step," Chris said, "it just got more serious and more serious."

'I lost it'

Melissa rode with Joshua in the ambulance. Chris followed with his mother. Their vehicles were separate, but their emotions were united.

"I'm glad my mom was driving me," Chris said, "because I lost it."

"I knew our lives would never be the same," Melissa said.

Chris wished he had played with his son more and held him more.

"You start hitting yourself with a guilt trip," he said. "I felt I've really fallen short and I might not get another opportunity. I had a pretty good meltdown."

They spent that Wednesday night in the pediatric intensive care unit. The following day, Joshua underwent a brain and spinal MRI.

"The doctors were very careful about giving any kind of speculation," Chris said. "They never really went over survival rates at that point. But the neurosurgeon said, 'We are going to pore over these MRIs tonight. We will develop a plan. We will make sure we're going into it with the right angle.' He was building our extreme confidence in what they were going to do."

The operation to remove the tumor was that Friday, Aug. 22. It lasted nearly nine hours.

In the intensive care unit after the surgery, with tubes snaking around his son, Chris felt like he was seeing him for the first time.

"I have never seen a stronger man," he said.

The neurosurgeon somberly told the Johnsons 95 percent of the tumor was removed.

"Ninety-five percent? We were thinking, 'Yes! Why aren't you happy?' Melissa said.

"There were some areas they didn't want to venture into," Chris said.

Then the neurosurgeon told them the cancer looks high grade and aggressive.

The final pathology report came back six days later and confirmed the suspicion. The official diagnosis is as rare as its name is long: embryonal tumor with abundant neuropil and true rosettes.

Their oncologist outlined the outlooks:

With only radiation, Joshua might have nine months.

With the most aggressive treatments, he might have 16 months.

Then the bomb dropped. Three days before their son's first birthday, the oncologist gave them "close to a zero percent" chance they would celebrate a third.

Through his tears, Chris asked, "Wait, wait, wait, are you telling me my little boy is going to die?"

"Yes," the oncologist said, but added, "You know that miracles do not come from medicine or doctors. Your little boy needs a miracle right now."

Then the oncologist reminded the parents while pointing toward their intubated son, "He is not the tumor. Don't look at him and see the tumor. He is Joshua."

'What did we miss?'

Melissa and Chris wondered, "What could have we done? What did we miss?"

"They told us even if we brought him in a month earlier, the diagnosis would have been the same," Melissa said. "That helped."

Joshua's oncologist has seen only three similar cases in 20-plus years, Chris said. A 2012 article in the Journal of Child Neurology says 70 cases have been reported.

"No survivors," Chris said. "Ever. We're going to have to do what every parent's nightmare is, and that's to have a funeral for their little child."

But they didn't have time to feel sorry for themselves. A few hours later, they had a decision to make. Aggressive treatments couldn't guarantee Joshua anything but getting sick from the side effects. Or the Johnsons could decline all treatment and just let their son live out his days at home.

Chris thought, "What kind of options are those?"

Instead, the Johnsons chose the experimental middle path their oncologist offered.

A month later, Joshua was healthy enough to return home, where his parents give him a proven anti-cancer drug, Everolimus, for an unproven purpose. It won't eliminate the cancer, but it could slow the growth and provide him more time and less suffering -- while maybe, just maybe, researchers make a scientific breakthrough against this rare cancer.

"It's a hope," Melissa said.

For them and others as well, because the oncologist would write a research paper on Joshua's case if Everolimus works on his cancer, she added.

"It would starve the proteins that the tumor needs and try to prevent it from growing new blood vessels," Chris said. "This medication has been used in various advanced cancers."

But not this one.

'The only thing'

When the Johnsons talk about their faith, it isn't a part of their lives they found just because of this crisis; they found this crisis is just a part of their lives because of their faith.

"It's the only thing that's getting us through," Chris said.

"The only thing," Melissa added.

"Sometimes it's hard to say, 'Praise God' when this thing is going on," Chris continued, "but you have to, because no matter what we're going through, He's given us so much."

Namely, their children.

"Any child is a gift," Chris said. "With adoption, they are truly gifts, because we don't have to have them. We're not guaranteed anything, and our children are on loan to us. They don't belong to us. Angels come in all sizes."

Melissa put that perspective this way: "Even though I'd much rather stay in bed and pull the covers over my head and not have to face it, if this is his path in life, he was brought to us for a reason and we've got to walk it with him."

They are grateful every time someone tells them Joshua is on their prayer list.

"As faithful as we try to be," Chris said, "we slip, and it takes someone following behind us to pick us up."

Some people who aren't usually prayerful have told Chris that Joshua's battle has "pushed them to their knees."

Which makes Melissa wonder about her son, "Maybe that's his mission."

"We want God's will because God's will is perfect," Chris said. "God's will so far has taken care of us. But even though we're praying for God's will, it's not stopping us from begging Him -- and we're begging."

Even in the same sentence, Chris ranges between poles of acceptance and defiance.

"Though we might not see it, for whatever reason, it's going to be for our betterment," he said, "but please don't take him away from us."

Melissa reminded Chris to cherish the precious present with their son. "He is here," she said.

"That's right," Chris said. "He's right here."

When he saw parents still experience joy with their children despite a disability or terminal illness, Chris has wondered whether he and Melissa could be that strong.

"It's like God has given us an opportunity to show that -- or even show ourselves that," he said. "If anything, what Joshua's going through right now makes us love and want him even more."

Close friends have told the Johnsons, "There are ordinary lives, and there are extraordinary lives. Even though Joshua's may be short, it's going to be a short but extraordinary life."

So they emphasize living in the moment.

"We should always live like this," Melissa said. "We never know if we're going to walk out that door and get hit by a car. But you get in the routine of life and all the worries, like if the grass is cut, and those things are not important anymore."

So what is important?

"Just being together," she said.

Epilogue

In December, the Johnsons will return to the Atlanta hospital to find out Joshua's progress.

Each day, they dissolve a 2 mg tablet in water and squirt the oral chemotherapy into Joshua's mouth. The drug is so toxic, they must wear gloves and masks to administer it.

"There's like 19 steps to prepare this medication," Chris said.

Joshua also takes drugs to suppress nausea and boost immunity. Two weeks into the regimen, the only side effect, Chris said, has been a bit of hair falling out when they comb Joshua's hair.

Everolimus must be mixed with only water, so no flavoring can help the Johnsons sweeten the bitter struggle with their son to ensure he swallows the hope.

"But when it's over," Chris said, "he gives us a big ol' grin. It's like a rainbow after the storm."

And when his parents lay him down in his crib, this verse from his namesake, Joshua 1:9, watches over him:

"Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go."

This story was originally published October 11, 2014 at 10:28 PM with the headline "Phenix City adoptive parents combat rare cancer with rare faith."