Lachie Love was diagnosed with a highly aggressive brain tumour called diffuse intrinsic pontine glioma (DIPG) only days after Christmas 2022.
Sadly, the life expectancy for children with DIPG is about nine months so Lachie’s family were thrilled recent scans showed a decrease in the size of the tumour.
“We would be expecting growth not shrinkage at this stage, so we thought this is very interesting,” Liesje Love told the Herald.
“He is only on natural supplements at the moment because his radiation treatment has finished.”
Lachie takes about 10 pills in the morning and eight in the evening, including CBD oil, fish oil and turmeric, boswellia extract, ground sea cucumber and other medications such as melatonin to help with sleep.
“He’s an absolute champ at taking them,” Liesje said.
“The sea cucumber smells so bad it’s a party trick to get people to smell it.”
“In May we were basically thinking we were saying goodbye because he couldn’t walk, he couldn’t talk, he was completely dependent on us for everything,” Liesje said.
“The hospital said hope for the best but prepare for the worst.”
About that time, Lachie had finished radiation treatment and developed an infection.
“Now he will walk down the hallway by himself and can walk short distances,” Leisje said.
“We use the wheelchair sometimes, but when he’s at home he can walk or crawl around.”
DIPG is an extremely aggressive cancer in the brain stem that grows into other tissue and cannot be surgically removed. It is described as being scattered through the tissue rather than a solid tumour. DIPG cases are always described as terminal.
The year had been bittersweet for the Love family, who have filled their days making amazing memories with Lachie.
Despite the financial strain, Andy took a year off work to care for Lachie, and Liesje worked from home when she could.
Lachie, who is unaware of his diagnosis, helped create a list of all the things he wanted to do in life, and the family have been ticking them off.
His recent 9th birthday was celebrated with an epic nerf-gun battle at a local scout hall.
A special Facebook page, “Lachie Love’s Bucket List”, has documented all the special times.
There has been ziplining and speedy rides on the luge in Rotorua, a special meet and greet with gorillas at the Orana Wildlife Park in Christchurch, and a trip to the Gold Coast where Lachie was the passenger in a $500,000 supercar.
He has been on rollercoasters, swum with dolphins, held a snake and ganged up on his dad and grandfather in a paintball battle.
Lachie has been treated to a private plane ride over the Hauraki Gulf and there have been multiple nerf-gun battles involving 45 guns and thousands of nerf bullets.
“His 9th birthday was epic with massive boxes set up for a nerf battle with his mates and Lachie crawling around,” Leisje said.
“They also had a stay at the Movenpick Hotel in Wellington where they had icecream for breakfast at 6am.”
The family had set up a Givealittle page to help continue Lachie’s bucket list and also pay for the unfunded supplements, physio, and time off work to care for him.
“We were paying $160 twice a week for physio for Lachie and the CBD oil alone is $200 a month,” Liesje said.
“We also bought his wheelchair because we needed it quickly and we couldn’t get in touch with the right people.”
As well as the highlights, there had been the sad reality of Lachie’s prognosis and some “big emotions” for a 9-year-old struggling with decreased mobility.
“We have lost three televisions in moments of rage because he gets so frustrated,” Liesje said.
“What he is going through is huge for anyone, but he is just 9 so it’s understandable.”
Liesje said more research and a robust care process was needed for children with brain tumors.
“We need more research in this space because we are detecting these cancers earlier,” Liesje said.
“Because of that we are seeing longer survival rates for the kids so we need better treatment options.”
Liesje said the care process for children with terminal cancers also needed improving.
“I feel like they are forgotten kids because nothing can be done for them,” Liesje said.
“There is no support for us or respite support for us with his behaviour so there needs to be a better wraparound service.”
By Kirsty Wynn
