Teenager’s trip to Florida was for radical cancer treatment, not for fun, but Tranent girl discovered a magic kingdom all her own.
She’s undergone a seven-hour emergency operation, spent 81 days in hospital, had six cycles of chemotherapy and then travelled to the United States for 10 weeks of state-of-the-art cancer treatment – all since the end of January this year.
And this week, as Tranent schoolgirl Niamh Yates turned 13, she received the best birthday present she could have wished for.
Doctors believe she’s finally cancer free, or NED, meaning “no evidence of disease”, thanks to a revolutionary cancer therapy.
On January 31, Niamh was rushed into emergency surgery with such speed her parents, Julie and Paul Yates, both 37, didn’t know she was in surgery until hours later.
She was diagnosed that very day in January with undifferentiated sarcoma, a cancer so rare it is said to affect only four people a year in the UK.
A cancerous tumour was pressing on a nerve in Niamh’s spine. Doctors feared she would have to spend the rest of her life in a wheelchair if she wasn’t operated on that day.
“As a parent that was a very scary thing to hear,” Julie said.
Then began the six cycles of chemotherapy, which stopped the cancer from growing but failed to destroy the part of the tumour that couldn’t be removed by surgery.
Niamh was having mobility issues and there was still the threat that she could be left paralysed in her lower body because of the location of her tumour.
Proton beam therapy (PBT), not yet available in the UK, was effective in treating these types of cancers, however.
The cutting-edge therapy is able to use radiation in a much more targeted way then conventional chemotherapy.
This precision means PBT can be used to treat tumours that defy more traditional methods.
There are also fewer side affects because a more targeted approach spares most of the surrounding healthy tissue.
In July, the entire East Lothian family – parents Julie and Paul, Niamh and her seven-year-old brother Conor – boarded a plane for the United States.
The family was heading to the University of Florida’s Shands Jacksonville medical centre for 10 weeks of PBT for Niamh.
The cost of the therapy alone was £120,000 and was paid for by the NHS.
The NHS also provided some support for travel but didn’t cover the entire cost of taking the family to the States.
Friends instantly rallied to provide the rest of the cost.
Julie was hoping to raise about £17,000 through fund-raising. Donations finally totalled around £30,000.
“It restored my faith in humanity,” Julie said. The family now plans to start a charity with the additional funds to help other cancer patient who need to travel for treatment. The charity will most likely be launched the beginning of next year.
Niamh received 36 treatments in all in the US, five days a week for nine weeks, with the treatments lasting roughly four to five hours each, including waiting time and transportation.
Niamh’s mobility is now improving day by day and she now only has to visit a clinic once a month.
“But with cancer there is always a worry hanging over you,” Julie said.
Niamh will be required to have another MRI scan to confirm that she is cancer free at the end of this month.
Worries over these scans are so common among cancer patients and their families that they have coined a word to describe it – “scanaxiety”.
It’s been a long, hard journey for the family and a few tears were shed, Julie said.
However, they have received support from each other and their friends.
The family is also grateful to FACE, Fight Against Cancer Edinburgh, for its support. FACE will take Niamh to Lapland to see Father Christmas this December.
There were breaks from medical treatments, however. The family got to swim with dolphins, visited Disneyland, Washington, DC and New York City and got to suck up the Florida sunshine.
Niamh will have to go back to Jacksonville for a follow up to the therapy next year.
“People asked us how we got through this,” Julie said. “I tell them we looked to Niamh who never said ‘Why me?’ or complained but just got on with it.”