‘Thomas just kept on battling’
Devastated parents have paid tribute to their beloved son who overcame childhood cancer then fought a debilitating lung condition for years.
Thomas Russell passed away on Friday, October 22, just weeks after undergoing a double transplant..
The 16-year-old was diagnosed with stage four neuroblastoma when he was just 11 weeks old and underwent surgery and intensive chemotherapy before eventually being given the all-clear.
In gratitude, mum and dad Joanne and David set up the Thomas Russell Cancer Trust, raising £100,000 to fund cancer research and support the wards at Newcastle General and the RV I where Thomas had been treated.
“When he beat the cancer, they said he could go onto have a normal life, which he did,” said David.
But in December 2013, came more devastating news, when Thomas was diagnosed with pleuropa renchym al fibro elastosis (PPFE) – a stiffening of the lungs, which makes it increasingly difficult to breathe.
Doctors locally could offer little help: “They had never treated a child with it before and they said ‘There is not much we can do’ – they didn’t give us much idea of time scales,” said Joanne.
“We went to Great Ormond Street to get a second opinion – they had had a child with the condition previously.
Doctors at the children’s hospital said a lung transplant was out of the question and gave Thomas just three to six months to live: “He battled on for seven years,” said David.
"After three or four years, they heard of a child in Germany or Belgium who had had a successful lung transplant and they believed they could do one too, so he went onto the donor register.”
The wait for a donor would last several years but then a couple of months ago, the family received the news they had been waiting for.
"He got the call eight or nine weeks ago and underwent a 10-and-a-half hour double lung transplant operation,” said David.
Thomas faced a number of setbacks during his recovery but overcame each one until eventually succumbing to infectionwhich had started in his lower bowel.
"All through the eight weeks, he battled and battled but eventually, he just had no more reserves left in his body to fight with – then he got sepsis and there was nothing they could do,” said Joanne
Now the couple and older son Harry are consoling themselves with the thought of all the extra time they had with Thomas, after first fearing they would lose him as a baby and then facing up to the PPFE diagnosis.
“He fought for eight years – he just kept on battling,” said David. “When he survived the transplant, we thought it was another positive step – then nine weeks later he was gone.”
Joanne added: “He never moaned about his condition. He did talk about wanting to get better but he never moaned about the present day.”
A funeral service will be held at St Mary’s in Bridge Street at 9.30am on November 9, followed by a private burial at Houghton Cemetery and a gathering for family and friends at the Stadium of Light.
Family and flowers only, donations to the Thomas Russell Cancer Trust, sort code 09-0666,account number 41978014. Donations will go to supportingScott House, and where David and Joanne stayed during Thomas’ final weeks.