Two years after her parents were informed that four-year-old Alexia Keeping had a life-threatening tumour growing on her brain stem, they had run out of options.
Despite radiotherapy that would push a grown human to their limits, doctors in Australia couldn't defeat the cancer.
The country's top specialist told them that he couldn't operate.
But he told them they had one hope – to seek the help of Dr. Alexander Herzog, a specialist who runs a clinic in Nidda, Hesse.
Travelling halfway around the world, though, would be far from straightforward.
Alexia's mother Hayley had to call on the help of their nearest and dearest.
“My father and my sister both had to remortgage their houses,” Hayley told The Local.
Other family and friends sold possessions at garage sales.
But funds were still sparse.
An aggressive cancer
It was on a March morning two years ago in Adelaide, South Australia that Hayley noticed her then two-year-old daughter's right eye was pointing a little towards her nose.
She and her husband took her to several hospitals, where they were told that Alexia probably had a lazy eye. But the family was still concerned, and wanted to be certain.
The public waiting list for an MRI (Magnetic Resonance Imaging) scan was around three months, so Hayley and husband Mark turned to private healthcare. The MRI scan was completed quickly, but it was bad news.
It showed that Alexia had Diffuse Intrinsic Pontine Glioma, or DIPG, an extremely rare form of cancer in which a tumour grows on the brain stem.
It is often inoperable as the tumour grows among healthy cells at the base of the brain which control vital bodily functions.
The survival rate is low for DIPG. It rarely appears in children over the age of eight, and only ten percent of children have lived more than two years after diagnosis, while less than one percent have lived five more years.
“They progressively lose their ability to move, swallow, smile, talk,” Stanford University pediatric neuro-oncologist Michelle Monje told the American Society for Biochemistry and Molecular Biology last year.
“But kids stay very cognitively alert throughout the course of the disease. They are aware of everything happening to them,” she added.
Heavy radiation treatment began within a week after Alexia's diagnosis, and every day she received the same amount of radiation that an average adult cancer patient would receive in six weeks.
The family were told that she had perhaps one more year to live.
It's been two.
Alexia is in Germany now. Thanks to the generosity of family and strangers, she has been in treatment with Dr. Herzog for three weeks.
She is undergoing a cutting-edge therapy which combines radiation, chemotherapy, immunotherapy and hyperthermia. During hyperthermia therapy, doctors heat the area around the tumour.
The increase in heat damages cancer cells while leaving healthy cells relatively intact. This makes the tumour more susceptible to other treatments, such as chemotherapy and radiotherapy.
But the family's financial struggles continue.
“We've only raised enough money to stay for three weeks, but the treatment is supposed to last three months,” Hayley explains.
The private treatment is quite expensive, and Alexia's family needs to raise around €90,000.
What's more, the family have had to separate during these difficult times.
Alexia and her mother are in Germany together, while Mark and Alexia's younger brother, Anton, are both still in Australia because they couldn't afford the trip.
“We are just praying and hoping for the best,” says Hayley.
By Ali Butt
Below are links to more information about both Alexia's story and DIPG as well as a link to Alexia's GoFundMe page.