Lachie Love, 8, has just been diagnosed with an inoperable and aggressive brain tumor.
Lachie Love, 8, has just been diagnosed with an inoperable and aggressive brain tumor.
When larger-than-life Lachie Love tells friends about the new scar across the back of his head he jokes it is from a shark.
The 8-year-old boy “with a sparkle in his eyes” knows it really has something to do with the “egg in his head affecting his vision”, but for Lachie, the shark story is a bit more fun.
For his parents, Andy and Liesje Love, the scar represents every parent’s worst nightmare and came after their son was diagnosed with an incurable brain tumour.
The Auckland schoolboy was diagnosed with an aggressive brain tumour called Diffuse intrinsic pontine glioma (DIPG) on December 29.
The family first realised something was not right when Lachie started squinting in one eye just before Christmas.
“We thought it was a bit weird but we thought perhaps there was just some visual things going on,” mum Liesje said.
“The next day he had a bit of a lazy eye and there were other things like issues with his sleep, waking at midnight, and being restless.”
A visit to the optometrist saw Lachie prescribed glasses but because of how suddenly the issues cropped up he was also referred to an ophthalmologist for further testing.
Within days there were further referrals, a trip to Starship children’s hospital, MRIs, a biopsy and then the diagnosis.
“That diagnosis was horrendous to hear. It was absolutely devastating.” Liesje said.
“Our amazing GP had already seen it come through and she spoke to us beforehand - she wanted us to go in and be able to talk about the options of treatment and not just hear the diagnosis.
“A lot of people hear the word cancer or tumour and they switch off - they don’t hear anything else.”
As a clinical psychologist who has worked at Starship helping families cope with diagnosis and grief, Leisje knows better than most of the challenges her family has before them.
“It’s time for me to walk the talk,” she said.
She also knows the unfortunate prognosis of children with tumours like Lachie’s.
They know there is no proven treatment for DIPG apart from radiation therapy to shrink the tumour and give Lachie as much time as possible to enjoy his life.
On Wednesday Lachie will have a mask fitting for his radiation therapy, which will start in a couple of weeks.
He’ll have six weeks of radiation as an outpatient, and rescan after a couple of weeks.
There are other clinical trials Liesje and husband Andy will look at, but they know it is a condition so difficult to treat there have been no breakthroughs.
“We will talk to the doctors and work with them and we will consider complimentary treatment elsewhere and abroad but we will always be asking if this is for him or if it is for us.
“Is it quality of life or quantity?”
What the family will do is make the next year the best they can for Lachie and his 6-year-old brother Harry.
Liesje’s sister Nikki Donkin has set up a Givealittle page in the hope of raising funds so Leisje and Andy can spend as much time as possible with Lachie and make some of his dreams come true.
“Lachie is a big personality and he loves music,” Leisje said.
