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Dancing In The Rain: A Thanksgiving With Childhood Cancer

Khai’s story is one of heartbreak, and one of Thanksgiving for the little things in life like dancing in the rain.

Yet, in what seems to be the brutally unfair and tragic world of childhood cancer, the 6-year-old and his parents, Doug and Chloe Davidson, say they have discovered seeds of hope and renewed faith in the power of prayer and have found much to be thankful for this week.

Just a few weeks ago, Khai nearly died from a rare liver condition brought on by chemotherapy treatments for the acute lymphoblastic leukemia, which he has been battling since being diagnosed on April 2.

Khai is back at his home recovering from his month-long brush with death and facing two more years of cancer-fighting treatments. And his family, including 3-year-old brother Dawson, is looking forward to giving thanks on Thursday.

“I’m thankful that we’re all going to be home together for Thanksgiving,” said Chloe, a photographer. “A few weeks ago, we didn’t know if we’d be able to do that. Not just do it because he was in the hospital, but just period.”

Khai snuggled next to his dad, a Plant Crist control operator, on their living room couch listening to his mother’s words. It’s hard to know if he fully understands what “period” means. But it’s clear he knows a lot for his tender age about the medical terminology and the toxic mix of drugs being injected into his body to knock out the cancer forever. He often helps his parents when they search for the right medical terminology. “Phen-ben,” Khai chimes in when Chloe tries to recall the medicine concoction doctors recently tried on him to calm his anxiety and nausea.

Diagnosis cancer

Khai, who has become somewhat of a cancer-battling celebrity through his Facebook page “Keeping up with Khai,” — with over 13,800 likes and counting — seemed to be a typical healthy and spunky boy a year ago.

“In March, he was playing T-ball, and he began complaining about his legs hurting,” Doug said. “We’d bring him home and give him a warm bath and ice his legs. We just thought it was growing pains.”

Khai’s pain increased until one day he was crying in agony when he got off the school bus. Soon afterward, the vice principal at his school, S.S. Dixon Primary, called.

“He said Khai was refusing to run and didn’t want to do anything … and he didn’t seem like himself,” Doug said. “When he got home, he looked pale. We took him to a doctor for blood work. He had a really high white blood cell count and low red blood count.”

The doctor said it could be one of two things — anemia or leukemia. A bone marrow biopsy the next day confirmed the cancer. A day later, a port was installed in Khai’s chest to start a 28-day round of chemotherapy at Sacred Heart Nemours Clinic in Pensacola.

At the end of the cycle, Chloe and Doug were relieved to learn that Khai’s cancer was in remission. But he was not out of the woods. He started another round of treatments meant to kill any remaining leukemia cells that could not be seen.

On October 9, after a subsequent 49-day treatment involving 19 rounds of nine drugs, Khai developed a fever and was hospitalized at Nemours.

Tests revealed Khai had three different cold virus strains. That’s when the rare liver condition, called veno-occlusive disease, set in. Khai’s belly began swelling and he experienced agonizing pain and breathing difficulty as his liver dramatically enlarged and he retained fluids.

“I was in a lot of pain. I couldn’t even sleep,” Khai said in a weak voice.

October 14, Doug, who was sleeping in Khai’s room, woke up to a doctor alerting him that his son’s condition was life-threatening. He needed to immediately be flown to Wolfson Children’s Hospital in Jacksonville where he could receive a new drug treatment that was in the third stage of clinical trials.

At first, Doug and Chloe were told there was no room on the medical aircraft for them.

“With him being 6 years old, not feeling good and having never flown before, I said, ‘I don’t’ care what you have to do, you have to find a plane that one of us can fly with him’.”

As Doug and Khai were preparing for the flight, Chloe packed and hit Interstate 10 for the nearly six-hour drive to Jacksonville.

“I was really emotional driving there,” she said. “I was thinking, ‘we’re we all coming back together. ‘ I was scared, because the medicine he was going there for had not even been approved by the FDA, and everything I read about the veno disease was scary. Nearly half the people who get it don’t survive.”

At Wolfson, Khai’s condition worsened. If the morphine began wearing off, he’d scream out in pain. Another mix of drugs caused him to become overactive and babble in his sleep.

About a week into the 21-day drug treatment, Khai began showing small signs of recovering.

A few days later, the doctor confirmed the treatment was working and Khai began to slowly recover. He was weakened from not having eaten — only receiving nourishment intravenously — and from being bedridden for nearly a month.

On November 5, he was finally released from Wolfson and returned home the next day.

He’s still weak and tires easily.

“I start limping,” Khai said about what happens when he gets tired.

But when he puts on his signature mask and yellow cape emblazoned with “Unstoppable,” Khai springs into superhero action, jumping around attempting Judo kicks and Karate chops.

Celebrity

Khai’s Facebook page is filled with his ups and downs and community fund drives to raise money for childhood cancer research. His “Khai Strong” motto has become an inspiration for others facing cancer.

Several Florida news outlets featured a story about his favorite Jaguars quarterback Blake Bortles visiting him before he was released from Wolfson earlier this month.

Pensacola boxer Roy Jones Jr. tweeted, “My buddy Khai playing catch with Jaguars QB Blake Bortles.”

All of this exposure made his Facebook page “likes” explode and made him recognizable in public.

“When we were in Jacksonville a waitress came up and said, ‘Are you Khai?’ “ Chloe said. “Since we’ve come back, literally everywhere we go, everyone says ‘Hi, Khai.’”

When asked how did he become a celebrity? Khai shrugged and said: “Just because I’m really cool and very special.”

Chloe admits it’s sad he’s gained notoriety from cancer, but says it has also helped him place hundreds of pins on his prayer map, a map of the world with people from nearly every country, including Russia and New Zealand, sending him healing prayers.

The family takes heart in the fact that sharing Khai’s story on Facebook has made a difference. Chloe pointed to a message she received from a woman who follows Khai on Facebook. “I want you to know you possibly saved my nephew’s life. We found out today he has cancer, and the only reason we took him to get blood work is because you shared Khai’s symptoms. I want to tell how grateful we are that you shared Khai’s story.”

Long road ahead

Khai is in remission but is now facing a long series of maintenance treatments to keep the cancer from returning through June 15, 2018.

The couple says they won’t be able to feel true relief until he’s the five-year mark in remission.

“Every time he has labs … every time they draw spinal fluid, we’re waiting to get that phone call hoping and praying they are not saying his cancer is coming back.” Doug said.

If he’s not faced with anymore complications, doctors say he has a 94 percent chance of surviving the leukemia.

“If it does come back, the next step is a bone marrow transplant,” Doug said.

“But we won’t go there,” Chloe counters. “It’s just scary … the what-ifs. The word relapse is scary.”

If all goes well, Khai will be able to return to school after Christmas break in January, which in his fragile state right now, is a foreboding thought for his parents, even though they long for him to return to some childhood normalcy.

While his parents talk about his condition, Khai becomes more solemn and buries his face in the couch. When his parents ask him what’s wrong, after a long pause and moan, he finally whines, “I’m bored.”

His parents laughed at the very, normal childlike response.

It could be worse

Even though their journey with cancer has been tough and heartbreaking the family does what they can to help other families facing similar and worse challenges.

“Compared to some of his friends who don’t have a chance, we’ve always danced in the rain and tried to make the best of a bad situation,” said Chloe, referring to a popular quote from inspirational author and artist Vivian Greene.

Khai even takes cupcakes and greeting cards to children he knows who are still hospitalized, some of whom will not leave the hospital alive.

“It makes me feel happy,” Khai said about the gesture.

When the family sits down to enjoy their Thanksgiving feast, those families whose will weigh heavy on their minds.

“For us, it’s going to be hard on Thursday because we’ve gotten to know a lot of families who will be sitting in the hospital for Thanksgiving,” Doug said. “But for us to have the ability to stay home and have a normal Thanksgiving … that’s what I’m thankful for.”