Levi Wheeler was only seven when he started seeing doubles.
“He’d say, ‘My eyes are getting weird, they’re squinting, I can see two of everything,'” mom Kathryn Wakelin told 9Honey.
“Until then he was just an ordinary kid, he was perfectly fine, there had been no problem,” said Kathryn, 44.
READ MORE: Meghan Markle welcomes court dismissal of UK tabloid appeal
Levi was the middle child of Kathryn and her husband Ben Wheeler, the peacemaker between older sister Olivia and younger brother Archie.
“He was just a gentle, caring child,” she said.
Unlike other cancers, it wasn’t long before Levi was diagnosed outside of his vision problems.
“There was no feeling that anything was wrong, he hadn’t been sick, it was just his eyes.”
Kathryn first took Levi to an optometrist who said the young boy had perfect vision. The next stop was an ophthalmologist who saw nothing abnormal, but sent him for further testing “just to be safe.”
She was in a bookstore in Westfield, Miranda when she got a call from the ophthalmologist telling her to pick up Levi immediately to Sydney Children’s Hospital in Randwick and have emergency personnel waiting for them.
“He said Levi had a lump on his brain and swelling and he needed to go straight to the emergency room. I dropped everything and ran to get Levi who was at the pool with his grandparents, his sister and brother. I called Ben on the way. to pick up Levi. He arrived just before us.
Levi had more tests and the registrar told them after an MRI scan that the lump “is not in the right place” and that they could not operate. But they still didn’t know exactly what they were dealing with, so a biopsy was taken.
“I told Levi that they found something in his brain and that they needed to do more tests to find out what it was,” she continues. “When they told us it was DIPG I told him the growth was cancer and they had to try to help him.
“He didn’t say much. It was hard for him to understand.”
DIPG stands for Diffuse Intrinsic Pontic Glioma. It’s a brain tumor who is very aggressive and difficult to deal with. It is located in the brainstem in an area called the bridge that controls the body’s most vital functions such as breathing, blood pressure, and heart rate.
It is virtually impossible to treat.
Speaking with Kathryn today and medical jargon comes out of her tongue with ease.
“When you step into a world of serious childhood illnesses, you adapt very quickly,” she says. “You have to defend them as well. Levi’s condition was so complex. We had to find out everything very quickly and make choices.”
Levi’s parents tried everything to try and extend their son’s life.
“His doctors were trying to find some medicine to help him, he was in two trials. We never told him he was going to get better, just that we were trying,” says Kathryn.
She spoke to child psychologists who helped her find the right words to explain the condition to her son, and to his siblings. They explained to him the importance of validating Levi’s feelings, both physical and mental.
“He was like, ‘Mom, my face can’t move and I look really weird. At first, I would say,’ No, you look beautiful. ‘ But then I realized he needed to be recognized, so I said, “Yeah, that must be very scary.” That sort of thing. “
Kathryn and Ben didn’t tell Levi’s siblings that their brother was going to die until his final weeks and when Levi wanted to have this conversation, they were advised to do the same with him.
“It was just that recognition,” says Kathryn.
Levi’s final weeks were spent at Bear Cottage, a children’s hospice center in Manly, Sydney for living conditions and end-of-life care.
Until she saw it for herself, Kathryn said she was afraid of hospice care for children.
“But it’s an amazing place,” she said.
Levi died in 2018, just 12 months after his diagnosis. Kathryn says he made a point of seeing Christmas, his favorite time of year.
In 2019, Kathryn and Ben started the Levi’s Project, to raise funds for research into better treatments for DIPG.
“We’ve had lots and lots of fundraisers since then and our community has been 100 percent supportive of us,” says Kathryn.
Their last fundraiser is Christmas, Levi’s favorite time of year. More than 600 Christmas trees in Sydney homes will be purchased in his honor. Cronulla Seagulls Clubhouse in Woolooware will unbox the 250 trees this Saturday with community members coming to collect their orders.
Our Father Cafe in Burraneer will sell even more, with the help of Santa Claus.
“Our hope is to have an effective treatment so that DIPG is managed as a chronic disease,” says Kathryn. “Yes, we’re hoping for a cure, but for the next few years, we’re hoping the kids can spend more time with their families, years rather than 12 months like we had with Levi.”
None of Levi’s treatments worked, but one trial he participated in was called ACT001.
“He was taking this medicine but at a different dose,” says Kathryn. “Now they are having success with other children with higher doses of the same drug, showing a reduction in tumor size, which shows how important the trials are.”
But she admits that she feels devastated by the discovery, which was not made in time to prolong her son’s life.
Kathryn says they are learning to cope with the pain of losing Levi.
“It’s very hard on the kids,” she says. “When you’re older you have the tools to deal with emotions. You know when to go for a walk with a friend or see a psychiatrist, but the kids don’t have the language to deal with it all. It was really tough. for them.”
For Kathryn, she describes life since the loss of her son as a “roller coaster”.
“Having Levi’s Project to focus on gives us a huge goal, a deep goal, but it’s a huge roller coaster of emotions,” she says. “The pain doesn’t stop or decrease, but you learn to take it better.”
If Levi had survived he would be 11 and look forward to another Christmas, which is why their Christmas fundraisers for Levi’s Project are so important to them.
“Levi loved Christmas, it was his favorite holiday of the year,” she says. “He dressed in a Santa costume and was counting to Christmas. His countdown is still there in the living room. He did it when he was sick because he wanted to go to Christmas and he held on. until Christmas. “
Each Christmas tree sold for Levi’s Project comes with “reindeer dust” that kids can sprinkle around their homes so the reindeer know where to go on Christmas Eve.
“Each year we have a different Christmas memory,” she says. “The first year we had Christmas baubles, the second we had cookies and this year it’s reindeer dust.”
For a daily dose of 9Honey, Subscribe to our newsletter here.
12 books we’re reading now that we can’t let go of