Boy, 8, Diagnosed With Deadly Brain Tumor a Week After Getting Eye Squint

Lachie Love, an otherwise healthy eight-year-old boy who loves swimming, climbing trees, football and music, was diagnosed with a rare, incurable type of brain cancer within a week of developing a squint in his left eye.

Lachie, from Auckland, New Zealand, was diagnosed with a brain tumor on December 29 that was later confirmed to be DIPG. Diffuse intrinsic pontine glioma is an unusual, aggressive form of cancer that primarily affects children—most diagnoses are made between the ages of five and seven. In the U.S., there are about 150 to 300 new diagnoses every year.

"Prior to being diagnosed, Lachie was fit and well and hadn't really had any health problems except the usual childhood issues," his mom, Liesje Love, told Newsweek. "There had been no concerns for his health at all. Problems like this had never been on our radar. Family wise, we have been really lucky."

In the week before Christmas, Liesje and her husband, Andy, noticed that their son had started to squint in his left eye. "The day after, the eye had started to turn in a bit, like a lazy eye," Liesje said. "I had taken him in to see an Optometrist the next day and it was discovered he was having some vision issues. This was on the 23rd of December."

Four days later, the Optometrist referred Lachie to a specialized eye clinic for further testing. Liesje began to worry that the issue might not just be an eye problem. "My background in psychology had made me begin to think that maybe something else was going on," she said.

"We were given an appointment at pediatric outpatients on the 29th at 10:00am and after being there for about two hours was sent to Starship Children's Hospital Emergency Department. The team there were amazing and were great with us and Lachie. They did a CT scan without contrast as Lachie is quite needle phobic and it showed a mass around the Pons."

The pons is an area in the brainstem that is responsible for a number of crucial bodily functions, including breathing, sleeping, bladder control and balance.

"We were admitted and the next day Lachie had an MRI under general anesthetic at which time they decided to do a biopsy, which although was somewhat risky, was warranted given the location of the mass," Liesje said. "The MRI showed a clear 'egg shape' in the brain. We stayed in the hospital until the 1st of January and then were able to go home while waiting for the results."

The "egg" was confirmed to be DIPG.

There is no known cure for DIPG and no chemotherapy drugs to date are known to have an impact on the survival rate. Because of the tumor's location in the brain stem, it is not possible to remove the tumor with surgery as the surrounding, healthy tissue is crucial for survival. Therefore, due to this lack of treatment options and the aggressive nature of the cancer, fewer than 10 percent of children survive two years from the diagnosis.

Lachie doesn't know the severity of his diagnosis, and he and his younger brother, Harry, were concerned about their mother being tearful in the hospital. "They both...kept giving me hugs and stuff but were confused why," Liesje said.

"We've deliberately not told him how bad it is as we want him to enjoy what he can without worrying about it or even having to think about it until we can't anymore," Liesje said. "Also for Harry's sake too. [Lachie has] seen the scan which clearly has what looks like an egg, so we've said it's making his eyes go funny and they're going to use some lasers on it to see if that helps."

On January 11, Lachie will be fitted with a radiation mask, and treatment will begin in a few weeks. He will then receive six months of radiation therapy as an outpatient, before a re-scan of the area.

DIPG.org has said that radiation therapy is an effective palliative treatment that improves symptoms in about 80 percent of children with the condition. However, these improvements are only temporary.

"We are looking at trials that are available and any other options that may improve his quality of life," Liesje said. However, these treatment options may be expensive, and both Liesje and Andy are self-employed so can't rely on sick leave and employer support.

As a result, Liesje's sister, Nikki Donkin, has set up a Give a Little page to raise funds for Lachie's treatment and to help him tick off some items from his "bucket list" while he still can.

"The whole experience feels surreal and the Give a Little is so humbling and overwhelming," Liesje said. "The outpouring of love is unbelievable and I get tearful periodically thinking about how amazing people are and what this means for what Lachie and what we can do for him."

At the top of Lachie's to-do list is:

1. See Blake Shelton in concert
2. Go to Disneyland
3. Do the Jurassic Park Ride
4. Visit Harry Potter World
5. Go the Bahamas and do the water slide under the sharks/aquarium
6. Go to the Pokémon Museum
7. Go snorkeling
8. Become a gamer

Liesje and Andy are trying hard to stay positive for their boys, but it is not always easy. "It's really hard when he talks about his future and when he is a grown up," Liesje said. "I also feel so sad for his little brother as they are best friends who drive each other crazy but also always think about including each other in everything they do. We are really aware that this also has a massive impact on Harry and are trying to protect them both as much as we can.

"Our medical and support team is amazing and we will discuss options with our doctors as we go. It's always going to be a tough decision about 'what if this might work' given there is not really any success treating this in children and prolonging life doesn't always mean quality of life. And that really tough decision about being able to do what is best for Lachie whilst wanting to try everything. It's a decision that no-one wants to make."

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