Stuck in limbo, desperate to live
Our survival stories: forgotten victims of Covid-19 whose life-saving treatment has been sacrificed in fight against virus
BRUCE Melvin is waiting for a life-saving kidney transplant. He is 10 years old and his father, Tony, is lined up as the donor.
But the vital operation has been put on hold due to the Covid-19 outbreak.
Mother-of-two Lesley Stephen’s breast cancer has spread to her lung. She needs surgery to remove a tumour, but it has also been cancelled over fears that patients may pick up coronavirus in hospital.
Bruce and Lesley are just two of the thousands of patients facing cancelled and postponed treatment as NHS resources are poured into fighting Covid-19.
Today we tell their stories ...
Bruce’s story 10-year-old boy awaiting kidney transplant donated by his dad
FOR 10-year-old Bruce Melvin, 2020 should have been a life-changing kidney transplant.
Now the Aberdeenshire schoolboy is in limbo with no idea when the operation will go ahead.
Coronavirus has put a stop to all but the most urgent transplants as hospitals have been forced to weigh up the risks of potential exposure to the bug in patients who would have to take immunosuppressing drugs to prevent organ rejection.
Bruce, who developed chronic kidney disease following a viral infection when he was four, began deteriorating rapidly last year and was admitted to the Royal Hospital for Children (RHC) in Glasgow from June until August.
“They told us in March last year that they reckoned he might have about two years before his kidneys deteriorated to this stage that he would need dialysis, but then everything just went berserk,” said his mother, Tracey Stevenson.
Blood tests revealed that his father, Tony, is a match, but transplants from “living donors” are elective surgeries and paused across the NHS.
Although Tracey, 49, and Tony are separated, the Covid crisis means that the whole family – including Bruce’s 12-yearold sister Sarah and brother Alfie, seven – are shielding together in the same house.
Tony has been furloughed from Tesco due to the danger of infection and Tracey, a beauty therapist, has also had to suspend her business during lockdown.
For now, Bruce continues to make the three-and-a-half hour journey by taxi from Elgin to Glasgow to undergo dialysis at the RHC three times a week.
“We’re absolutely gutted because we thought come this time next year Bruce would be back on the mend and able to have quite a normal life, to attend school properly – but we’re just basically left on tenterhooks again.
“We don’t know when it’s going to happen, but at the moment dialysis is keeping him safe.
“As much as we really want him to have this kidney now I don’t think putting himself and his dad at risk would be a good option. It would be stupid.
“Bruce copes okay, but he’s started to get frustrated and irritated. His behaviour at the moment isn’t the best but they’re saying it’s possibly the way he’s trying to deal with everything that’s going on.”
The family has been supported by Kidney Kids Scotland.
A Scottish Government spokesman said: “We are working with transplant units to ensure patients in need of a lifesaving transplant can receive it.
“While a small number of urgent transplant operations have continued to take place, we expect the number of patients undergoing transplant operations to be able to increase in the coming weeks and have been having regular discussions with Scottish transplant units on this.
“We are considering how NHS boards will begin to restart services, such as transplants and elective procedures.”
Lesley’s story
Mother-of-two whose breast cancer has returned
WHEN married mother-of-four Lesley Stephen was told she had months to live in 2015, she headed off to New York with her family on what she expected to be their last-ever holiday together.
The former communications consultant, from Edinburgh, had been diagnosed with advanced breast cancer in March 2014.
By October 2015 she had exhausted the standard NHS treatment options and her oncologist told her it was time to “get my affairs in order”.
“I was obviously devastated,” said Lesley, 54. “We went off to New York with the kids on what I thought would be the last family holiday.
“I was pretty ill at that point – there was a lot of cancer, mainly in my lungs – so when we came back my oncologist said ‘you can either have one final line of chemotherapy or there’s one place left on a clinical trial in Glasgow at the Beatson’.
We’re absolutely gutted because we thought come this time next year Bruce would be on the mend. We don’t know when it’s going to happen
“I was so lucky – I was willing to go almost anywhere if it might extend my life.”
Lesley was one of only 40 patients worldwide to take part in the Phase One trial for Epertinib, a breast cancer drug developed in Japan.
She also had an unusually positive response to it – what is known as a “super-responder”. Her cancer went from been terminal to stable, and more than six years on from her original diagnosis, with her children now aged 11 to 20, she enjoys “a pretty much normal quality of life”.
However, over the past year the disease has begun to push back against the drug and grow.
On May 8, her oncologist told her they needed to operate to remove a tumour in her lung but – due to Covid – the surgery is on hold.
Cancer patients are at higher risk of serious complications and death if they contract the infection.
Some less invasive procedures, such as skin cancer removal, are being performed for the NHS in private hospitals.
However, major surgery that requires intensive care to be standby has to take place in acute hospitals, and these have been considered too Covid “hot” for all but the most urgent cancer operations.
“I have no idea when it will happen,” said Lesley.
“I would say that they maybe need to look at each cancer patient as an individual. Apart from this I’m pretty fit and healthy – I just went for a 6km run this morning.
“The risk of it not going ahead could be greater than the risk of me getting the virus.
“The longer these delays go on the worse the outcome for all non-Covid patients.
“It’s not that we want any sort of preferential treatment, we just want equal treatment.”
Maggie’s chief executive Laura Lee said: “Living with cancer just now means intensified feelings of anxiety and fear as people are cut off from loved ones through shielding and have the added worry of the impact of coronavirus on their treatment.
“It has been particularly difficult for those with limited time who tell us that they feel like they are living in limbo, watching their life clocks tick away unable to spend quality time with loved ones or do any of the things they might have hoped to do.”
Tracey Gillies, medical director for NHS Lothian, said cancer treatment and surgery “has continued for the most urgent of cases”, but some patients may have moved to a less frequent treatment cycle of chemotherapy in order to minimise the number of times they have to visit the hospital.
She added: “All patients requiring surgery are assessed and scheduled based on the urgency of their case to avoid unnecessary risk.”
The risk of it not going ahead could be greater than the risk of me getting the virus