His parents Diana Troebner and Mario Alcade San Martin have been told Magnus has less than a five per cent chance of survival and Magnus’ care now includes palliative care.
“I’m taking videos and photos very consciously now. Sometimes I just record his voice,” mum Diana told the Herald, her voice breaking.
“I feel terrible doing that because I assume that he’s not going to be with us very soon.”
Magnus Alcade-Troebner, 3, has rare cancer and his care now includes palliative care. Photo / Supplied
Troebner and Alcade San Martin welcomed a baby daughter in April - a sibling Magnus has embraced wholeheartedly.
Troebner speaks about her son’s love for his little sister Aurora and how difficult it can be to watch them play together.
“I want him to grow up with his sister. He’s such an amazing big brother” she said.
The family has spent the last few months packing up and flying to Christchurch every few weeks for Magnus’ treatment.
I say ‘sweetie, I wish for you to die happy and healthy when you’re very old and wrinkly’. That’s my wish for him.
Neither parent wants to stay home in Wellington during the appointments in case the situation changes suddenly, Troebner said.
Ahead of his hospital days, Magnus gets upset, Troebner said.
“He says: ‘Oh, I don’t want to go there. It makes me feel wobbly and yucky’. And when we’re there, he’s already asking: ‘When are we going home’?
“Obviously as a parent you never want to give up,” she said.
“We, as parents, need to see how much more he can take. It’s just an impossible decision because you want to battle and you want to fight for him, but we also need to find a moment in time when we know that it’s enough.”
Magnus, 3, has embraced big-brother life since sister Aurora was born five months ago. Photo / Supplied
If the family decides to travel overseas in search of other treatments, it will most likely be to Barcelona.
A Givealittle fundraising page was set up a year ago to help pay for any treatment and costs incurred by the family - and it has raised more than $111,000.
“You need to pay up front so that’s why we’re fundraising for it - to be able to respond quickly. Or if we decide to radiate the spots in his skull, we would need to travel overseas to do that.”
For now, the couple’s goal is to make Magnus’ dreams come true - from going to the beach, seeing a digger, going to the zoo and riding a tractor.
“Every wish he has right now, honestly, if we can make it happen, we’re making it happen,” she said.
“Making every day count, making him happy every day and having some amazing time with his sister.”
Troebner revealed her son has an understanding of what death means and has innocently asked when his time might be.
“I say ‘sweetie, I wish for you to die happy and healthy when you’re very old and wrinkly’. That’s my wish for him, obviously - to lead a happy and long life.”
