The generosity of strangers has raised more than $150,000 to get 6-year-old Nora Guise into an American cancer treatment trial that could save her life.
But the Texas treatment team have dropped a bombshell - the cost of the treatment has climbed and the Guises now need another $70,000 to give the Christchurch girl one last chance to kick the disease.
Nora's plight was shared on Givealittle and in the media last month after her rare liver cancer - hepatoblastoma - was diagnosed in August 2018.
• 6-year-old Nora Guise's last chance to battle rare liver cancer lies in the US
• Cancer care: Government unveils national cancer agency
• Why are so few Kiwi cancer patients in clinical trials?
• Doctors are to trial new machine that can detect cancer in seven minutes
It's likely her cancer has been caused by a mutation in a gene that normally suppresses tumour growth, meaning she is vulnerable to many cancers. Her little sister and her father have also been found to have the gene.
After a year of treatment including surgeries and chemotherapy oncologists told the Guises there was a potential life-saving cell treatment trial available in Texas.
The Christchurch family were told she was accepted into the part-funded trial but it would cost an initial $140,000.
A Givealittle page was set up on September 20 and thanks to generous Kiwis, the family raised more than $150,000 in less than a fortnight.
The outpouring of support had brought the family to tears, Nora's mum Elyse wrote in an update on the page.
"We have been living with a dark shadow for so long. A dark shadow that might take our Nora," she wrote. But all the donations and love from strangers was shifting that shadow, she wrote.
On Monday the medical team contacted the Guises to ask to see Nora so they could draw her blood and start creating the T cells, her mum wrote on Givealittle.
But the next day the finance team from Texas had called and dropped a bombshell - the treatment cost had skyrocketed.
Guise posted to Givealittle on Tuesday about the "rollercoaster" the family is on.
"Yesterday Texas got in touch and asked to see Nora this week to draw her blood and start creating the T cells. This morning I spoke to the financial team and they have DOUBLED the estimate. My heart absolutely exploded in my chest," she wrote.
"We now need another $70,000 NZD!!! This has shocked us and we are still trying to negotiate with them and hope they will still see Nora this week.
"If you can please continue to share and donate as this is now, once again, out of reach."
People wishing to donate can head to their Givealittle page here.