Taupō cancer patient Elyse Johnson has defied the odds and celebrated her 8th birthday recently. Photo / Casey Johnson
Taupō cancer patient Elyse Johnson has defied the odds and celebrated her 8th birthday recently. Photo / Casey Johnson
For the past six years, Elyse Johnson's parents felt that every birthday could be her last and made a huge effort to make it memorable.
On her most recent birthday, Elyse turned 8 and had all her friends over. Her mum Casey Johnson says she is "so grateful" her daughteris now well enough to have a fairly normal celebration.
Elyse developed diffuse intrinsic pontine glioma (DIPG), an aggressive and inoperable form of brain cancer, when she was just 2 years old and doctors gave her nine months to live.
Casey says it has been a hard six years but is incredibly grateful to the emotional and financial support from the Taupō community, who have pitched in and helped fundraise for expensive medication that keeps the tumour at bay.
On a daily basis Elyse takes TBL 12 sea cucumber extract to boost her immune system. This costs $1600 per month and is now funded by Pharmac.
"It was a lot of pressure paying for the TBL before it was funded."
She also takes vitamin C and turmeric.
Each day, for pain relief, Elyse takes cannabidiol drug nabiximols, made by Tilray, which costs $700 a month. Casey says the Tilray is shrinking the brain tumour.
"She had a scan last week and the tumour has shrunk to 4.5cm [diameter]. It was 4cm when we first found it and got to 6.6cm at its biggest."
For her birthday, friends and family often give Elyse experiences, and this year she was given a parasail.
"She's a bit of a daredevil and is really excited about going parasailing."
As a toddler, Elyse learned to walk and talk, however the cancer quickly reduced her to a wheelchair, and only recently has the tumour shrunk enough for her to begin to relearn these skills.
Elyse Johnson's cancerous brain tumour is shrinking, and her mum says it's all thanks to medicinal cannabis. Photo / Casey Johnson
Elyse crawls and has an electric chair that she rides at home and at school. Rehabilitation sessions, swimming lessons, and horse riding at Riding for the Disabled Taupō is helping her develop strength, and she has just progressed to a new walking frame.
She can say a few words and has an app called Podd to help her express her ideas. Casey says Elyse understands exactly what others are saying, and hopes her language skills will return if the tumour shrinks to 2cm.
"It would be so nice if she could talk again. She doesn't mind so much not being able to walk, but gets really frustrated with not being able to say what she wants."
Elyse has attended Wairakei Primary School since the age of 6, and Casey says she is Miss Popularity, with her friends rushing out to say hello when she arrives each morning.
"She loves school, is doing really well, and is learning at the same rate as the other 8-year-olds."
Fluid around the tumour has caused health issues and missed school in recent years, however, Casey says Elyse never seems to catch any bugs going around.
"In the past six years she has had one cold. With Covid-19, the doctors have told us she is no more at risk than any other 8-year-old."
The tumour is slowly but steadily tracking down in size. At the moment Elyse is well enough to go out on the farm with her dad Jamie and get into some rough and tumble with her older brother Blake, 11.
"It's been a hard road for Blake. He is an incredible brother. He can do all Elyse's meds and feeding.
"Now that Elyse can get out of the house a bit, it's got a bit easier for us all."
In recent years Casey and Jamie have gone share milking, and are now in a better financial position to pay for medicine. However, there is just $300 left in the account and the family is appealing for funds to pay for Elyse's medicinal cannabis.
You can follow Elyse's journey and make a donation at https://givealittle.co.nz/cause/supporting-elyse
