After being diagnosed with medulloblastoma, fourteen-year-old Aneliese Kay has made a Givealittle page for her bucket list. / Greg Bowker
Erika Kay thought her 14-year-old daughter had kicked cancer.
It had been about 18 months since the end of her year-long, intensive chemotherapy sessions and Aneliese Kay's medulloblastoma had virtually disappeared.
But a backache after a fun family day out would spin the Morrinsville family's world into turmoil once again.
Aneliese is not only paralysed from the waist down but now there's no cure.
Aneliese was disagnosed with medulloblastoma, one of the most common paediatric malignant primary brain cancers, in 2012.
She had a headache and Kay initially thought nothing of it. But then she noticed her daughter's eyelid was slightly droopy.
"She was supposed to be one of the ones it didn't come back to," Kay said.
"There was no clinical indication, no warning signs, nothing. We all thought she was fine. Her last scan was in December and it was clear. We weren't supposed to be back until June 1 for her next scan."
Aneliese Kay, 14, is feeling good but "bored" as she gets treatment. She's looking forward to getting out and ticking off her 'life list'. Photo/Greg Bowker
Just after New Year's the family had spent the day at Waimarina water park in Tauranga. Aneliese enjoyed kayaking, jumping off bridges and going down the hydroslide.
"We got home and she said 'oh I've got a sore back' and I just assumed she'd jolted it, so I was just like 'go jump in the bath, you'll be fine'. It didn't even cross my mind that it would be this. And then within an hour she couldn't walk."
As a precaution her parents took her to Waikato Hospital where staff also didn't think it was anything serious as an x-ray came back clear.
An MRI proved otherwise. She was immediately transferred to Starship Hospital in serious pain.
Kay said Aneliese now had three tumours in her spine. However, medulloblastoma is known to quickly spread so it's just a matter of time before it affects more of her body.
They hope to try and stabilise the cancer but have been told there was no cure.
Kay said it was weird how many kids were being diagnosed with brain tumours, especially in her old neighbourhood around Rototuna and Huntington in Hamilton.
"Even where we lived when she was diagnosed, a couple of kids in that area were also diagnosed with brain tumours. It's weird that there's so many children being diagnosed with them. I don't know what it is."
The couple were about to buy a new home in the suburb of Rototuna when Aneliese was diagnosed but given they would drop down to one income they decided to move to Morrinsville.
"We decided it was better to move out a little bit and not be so much of a slave to a mortgage and just to enjoy life a little bit more."
That meant they have been able to make the most of the past 18 months.
"After she was off treatment she was really lucky she didn't have many side effects at all, and I guess when you've got four kids you often put stuff off. But with everything this past year it's been amazing, we've been to Thailand. The kids had never been overseas before.
"We were talking about how grateful we were that we've made the most of this remission time, so we don't have any regrets about that."
Aneliese had since come up with a "life list" to tick off when she get home.
Erika said her daughter loved sushi, which was one of the main reasons she wants to travelto Japan.
Aneliese loved food and when diagnosed in 2015 was swamped with recipes after doing a shout out on Facebook.
It's unclear how long Aneliese has. Doctors had estimated up to two years but Erika knew that was highly unlikely, especially given how aggressively the cancer had come back.
"From walking around fine to being completely paralysed from the waist down, it was an hour. We're just going to take a cocktail approach and hope that something will slow the growth or stabilise it."
"[Doctors] are respecting her wishes to go home because there's no point spending a lot of time in rehab; time that she doesn't have."
Aneliese told the Herald she was "good but bored" in hospital and keen to get home.
At the top of her list was travelling first class.
"It's just something that I have always wanted to do and something that people say you should experience at least once."
Next on the list was getting a pug dog - which her mother has already organised - followed by giving her room a makeover.
McDonald's and Sky City have got onboard. As well as nuggets, the takeaway giant is going to turn her home into a movie theatre and provide food and films.
Sky City is offering the whole family, including her three siblings, a night at its five-star Sky City Grand with breakfast and a visit to its tower.
A givealittle page has also been set up to help fund the rest of her life list wishes.
ANELIESE'S STORY
One of Aneliese's wishes is to have a story printed in the Herald. These are her words about her journey.
This all started in June of 2015 when I had intense headaches, which led to a long hospital visit and a diagnosis of two horrible brain tumours.This led to an immediate transfer to Starship Hospital and surgery that night.
After my mum posted on Facebook about my love of baking I was overwhelmed by all the letters, recipes and kindness I received from all around the world.
During the time I was in the hospital, I started realising all the amazing things life had to offer.
After a long recovery including 12 months of radiation, chemotherapy, rehabilitation, and speech therapy I was able to walk and talk again and was declared NED (no evidence detected) in May 2016.
We wanted to move forward in life and did some things we'd always wanted to do and with the help of the Make-A-Wish Foundation, flew to the South Island to swim with dolphins, walk a penguin trail, even cooked with Josh Emmett at Rata restaurant and stayed the night in The Castle.
In Queenstown, we spent quality family time, went luging and did a canyon swing.
Once back home, my life was returning to normal and I went back to school, flew to Thailand, stayed in a resort, swam with elephants, went camping, jet skiing and biscuiting.
Just when my life was where I wanted it to be, I started having awful back and leg pain, and was diagnosed with a relapse, now undergoing treatment and learning to live with leg paralysis.
With my now limited time, I don't want to waste it on sadness, instead focusing on completing my wishlist, which includes redecorating my room, getting a pug, flying first class, drinking a glass of Moet with my mum, having a spa day with my sisters and generally spending more time with family.
