Oakboro child battling rare cancer improving at home after 35-day stint at Levine

About an hour after breakfast on Feb. 1, 4-year-old JJ Funderburke approached his mom Stacy and told her he was feeling strange.

JJ said he thought there was a “sausage biscuit stuck in his mouth,” Stacy recalled, before her son pointed to his chest area. He had eaten sausage biscuits for breakfast.

She checked him out but didn’t notice anything wrong. He drank water, said he felt better and went on playing like usual.

“We didn’t think anything of it,” his father Josh said.

On Feb. 5, JJ, who lives in Oakboro, began complaining that his stomach was hurting. Stacy again checked on him and noticed his belly felt tight. Thinking it was gas — Josh thought he might have been bloated from dinner, she asked if he needed to go to the bathroom. He said no, continued playing with his 1-year-old sister Issa and, once again, everything seemed normal.

It would be short-lived.

Just a few hours later, Stacy estimates around 3 a.m., JJ came into his parent’s room crying, this time about his shoulder hurting. Even though he soon fell back asleep, his parents became worried. JJ was a healthy child, with no history of major injuries or illnesses, so they weren’t sure what had been causing him pain over the last week.

Stacy quickly got on her phone and reserved an appointment for JJ at an urgent care in Albemarle later that morning.

At urgent care, the doctor performed an X-ray and saw what he thought was free-trapped air. Thinking it was a perforation in JJ’s intestine, the doctor was about to send him to Jeff Gordon Children’s Center in Concord before he realized the surgeon he wanted worked at Levine Children’s Hospital in Charlotte.

Once at Levine, the surgeons said they were a little worried because they could feel an enlarged liver and what they thought was an enlarged spleen. They ordered a CT scan.

Awaiting the CT results, the Funderburkes were playing with their son in his room when two surgeons asked to speak with them next door. When a surgeon went to get additional chairs, Stacy began to worry.

“When they tell you to sit down it’s usually not the best news,” she said.

The scan revealed that there was no perforation and instead of an enlarged spleen. JJ had a malignant mass on his left kidney the size of a grapefruit. The scan also showed innumerable masses in his liver and lungs, through his inferior vena cava and into the right atrium of his heart, Stacy said.

Josh then asked about cancer, which until then had not been explicitly mentioned.

Once the doctor’s confirmed it was cancer — specifically Stage IV Wilms’ tumor, a rare kidney cancer that primarily affects children ages 3 and 4 — the gravity of the situation hit Stacy and she immediately burst into tears.

Though she didn’t know of any family members who’d had cancer, Stacy’s mind quickly shifted to “Jeopardy!” host Alex Trebek, who died last year from Stage IV pancreatic cancer. She feared a similar fate would befall her son.

“That was the only connection I made at that time,” she said.

Unlike Stacy, Josh struggled to process the life-changing information, saying he was in a “state of disbelief.” His sole concern at that point was about his wife’s well-being.

“My first thought was let me comfort Stacy and let’s see what we have to do to get through this,” Josh said.

Only later, once he had time to properly digest the information, did Josh realize the full extent of what had actually happened. Once he came to grips with it, Josh admits that JJ’s cancer diagnosis “hit me like a truck.”

Based on the size of the tumor, doctors estimated it had been growing inside of JJ for a year.

His parents were thankful that at 4 years of age, JJ had no real concept of what cancer was or how dangerous it could be.

“When we hear cancer we’re terrified, but that word means nothing to him,” Stacy said.

In preparing their young son for what was to come, Josh explained the situation as such: “I told him he had a big sickness so we need to do big medicine to take care of it.”

His son was “comfortable” with that explanation, Josh said.

Struggling with complications

Doctors at Levine kept remarking to Stacy and Josh about how “remarkable” their child’s case was, in terms of how widespread the tumor had metastasized. His primary oncologist, for example, noted that while she had only ever dealt with two similar Wilms’ tumor cases, JJ’s was the first where masses actually reached into the heart.

Trying to draw some levity from an otherwise serious situation, the couple, upon hearing the remarks, joked that JJ “doesn’t do anything halfway.”

A few days after JJ’s biopsy on Feb. 8, he began an intensive, six-week chemotherapy cycle. He would spend the rest of February and the first part of March at Levine.

During the next month, Stacy and Josh split parental duties: One person was always home taking care of Issa while the other was in Charlotte watching over JJ. Many sleepless nights were had by their son’s bed.

Both of their employers — Stacy is a teacher at Albemarle High School and Josh works for Publix Super Markets — allowed them to take paid leave to be with JJ. (Stacy notes that members of her Bulldog family even donated their own hours to make sure she would get paid through the end of the school year.)

The first few weeks of chemotherapy were especially tough for their son, as he developed one complication after another, including an active bleed on his biopsy site. An especially serious situation arose when doctors detected a large blood clot that had developed off his liver. It’s an uncommon but potentially life-threatening liver condition known as veno-occlusive disease. Stacy said doctors told them that instead of blood flowing out of his liver, it was instead flowing back into it.

VOD is so rare, the couple was told, that none of JJ’s doctors had ever seen it before in a Wilm’s patient. Doctors at Levine consulted with more than a dozen other oncologists in order to get a good read on how to properly treat JJ, Stacy said.

As the weeks progressed, JJ’s conditioned worsened.

“There were weeks when he wouldn’t stand up and wouldn’t eat,” Stacy said, adding that because of his weakened state, he was placed on IV nutrition and a feeding tube was inserted through his nose. “He had no energy to do anything he was in so much pain.”

At one point, JJ lost 11 pounds, though he’s since regained much of it.

The isolation from other kids on his wing due to COVID-19 did not help. Whereas before the pandemic, when kids at Levine could interact and play with each other, JJ spent his time at the hospital away from others his age.

“Basically all he saw was me, his mom and the nurses and doctors,” Josh said. “He was completely isolated from all the other kids.”

Josh said throughout the first weeks at Levine, his happy, fun-loving, selfless boy became sullen and stone faced — like a ghost of his former self.

“We would call out to him and try to get his attention and he would just be unresponsive,” said Josh, who felt guilty that he couldn’t do more to ease his son’s pain.

“Seeing him like that was the hardest thing I’ve ever had to deal with in my short 30 years of life,” his dad said.

Getting to see his little sister again

JJ’s condition began improving once he was placed on steroids to help combat the VOD. His energy started to come back and he began eating more, Stacy said. He eventually was placed on blood thinners to help remove the clot.

The first major breakthrough, where JJ finally started to resemble his old self, occurred toward the end of February, when he was interacting with his sister through Google Duo, an online video chat app. His sister was wearing his pajamas, which prompted a smile from JJ.

Playfully laughing, JJ told his sister to “take off my shirt,” his mom said. This was the first time in weeks that Stacy and Josh had seen their child smile.

“That is his world, that’s his best friend, he loves her so much,” Stacy said about JJ’s bond with his little sister.

The enormity of the interaction between JJ and his sister was not lost on his parents.

“It was as if he had been lost and and then I saw him again for the first time,” Josh said about that moment.

What also brought JJ joy was watching cable television — something the family does not have at home — especially the classic children shows “Spongebob Squarepants” and “Blue’s Clues.”

JJ was taken off his IV medication on March 8. A few days later, his first round of chemotherapy ended and he went home to Oakboro, to be reunited with Issa. He spent 35 days in the hospital.

When the siblings saw each other for the first time, their faces lit up. They ran to each other and embraced with a hug, Stacy said. After his parents stopped Issa from jumping on him, JJ’s big brother instincts kicked in: “He put his arm around her and said, ‘Don’t yell at my sister,’ ” Josh said.

Stacy joked there was a “golden period” where JJ and his sister behaved and got along but it’s now passed.

“They’re kind of back to their sibling bickering and arguing.”

JJ Funderburke with his little sister Issa. 

Becoming one of #MollysKids

As news of JJ’s cancer diagnosis began to spread throughout the county, Stacy found herself getting overwhelmed with people wanting to become friends on Facebook, as a way to stay connected to what was happening in Charlotte. To make it easier to share updates with the public, Stacy created the Facebook page JJ’s Army in early March, which also happened to be Kidney Cancer Awareness Month.

On March 11, the family posted a short 5-second video of them leaving the hospital to go back home. As Stacy asks her son what they’re doing, he replies, “We’re bustin’ outta here.”

Around this time, a former co-worker of Stacy’s floated the idea of the family connecting with WBTV news anchor Molly Grantham, who works to spread awareness about children in the region battling serious illnesses. Stacy had been following #MollysKids ever since Grantham wrote about another Stanly County child, Brinn Andrew, who was diagnosed with cancer in 2019. (Her family learned she was cancer free last year.)

“Never in a million years did I think I would have a kid that would be eligible or featured on #MollysKids,” she said.

Stacy exchanged emails with Grantham about JJ for several weeks before the news anchor wrote about him and welcomed him into the #MollysKids family. Grantham posted about JJ on her Facebook, Twitter and Instagram accounts, Stacy said. Grantham’s Facebook post about JJ has received more than 530 comments and has been shared almost 200 times.

In an interview with The Stanly News & Press, Grantham said it was Stacy’s unique description of her son complaining about the “sausage biscuit” stuck in his mouth that stood out to her, especially as a writer.

“With #MollysKids, I tell the good, the bad and the always real, and so ‘I have a sausage biscuit stuck in my throat’ (coming from a 4-year-old) is pretty real,” said Grantham, who started #MollysKids more than a decade ago.

In the span of a few days, the number of people who liked JJ’s Army Facebook page skyrocketed following his appearance on #MollysKids. “On the 24th, JJ’s page had around 180 followers and as of today (last Friday) it has over 1,000 followers,” Stacy said.

People from as far as Washington, Nevada and Maine have commented on the Facebook page with messages of support, Stacy said.

“I’m so thrilled for them (Stacy and Josh) that they feel like it was helpful to them,” Grantham said about JJ being featured on #MollysKids, “but really, honestly, we’re just hoping that everything works out for JJ.”

Optimistic going forward 

The family met with JJ’s oncologist and cardio specialist last week and learned that JJ’s cancer is shrinking. His heart is now cancer-free while the masses on his liver are much smaller. The main mass on his kidney has also shrunk several centimeters.

The only worrying sign is that his heart function has decreased since the initial diagnosis, though it’s not in “the bad range yet,” as Stacy posted on Facebook.

While JJ is not quite out of the woods — he started another six-week cycle of chemotherapy this week (though it will be at home) and surgery to remove the tumor on his kidney will eventually be required — “he is as healthy as he can be given the situation and everything the doctors are doing is working,” Stacy said.

One sign that JJ is improving and regaining his old self is that he’s constantly smiling, his mom said, which was a trademark of his before the diagnosis.

JJ Funderburke with his mom Stacy. 

Even with his new cycle of chemotherapy, his family is grateful that he is improving and they are looking forward to some sense of normalcy in the near future.

“JJ has been so brave throughout this entire experience,” Stacy said.

The plan is for JJ to go kindergarten this fall at Oakboro Choice STEM School. Stacy filled out his application at the beginning of February, the day before he was admitted to Levine. On March 11, the day JJ was released from the hospital, Stacy received an email that he had been accepted to the school. She has already spoken with the principal and was assured that Oakboro will do whatever it can to meet his needs.

Stacy and Josh both admit that the past several weeks have tested them in ways they didn’t even know possible; through it all, though, they have leaned on their faith to help get them through the tough moments. Ever since that first day JJ was admitted to the hospital, which Stacy can barely remember and describes as a blur, she has felt a “supernatural peace” come over her.

“We know that JJ is going to be okay,” she said.

If anyone would like to help the family, a friend set up a GoFundMe campaign with the goal of raising $20,000 to help with JJ’s medical expenses. So far, around $6,000 has been raised. People can also directly send letters or cards to the family at P.O. Box 218, Oakboro, NC 28129.