Brave children forced by Covid to cope with cancer all alone
PARENTS of young cancer sufferers have shared harrowing accounts of their children bravely battling the disease as the world was gripped by coronavirus.
As lockdowns brought the nation to a standstill, thousands of youngsters still faced the nightmare of gruelling treatment and rehabilitation.
Now in the middle of Childhood Cancer Awareness Month the Sunday Express has spoken with some of their families to reveal the harsh reality of dealing with cancer in the face of Covid-19.
Young patients were forced to endure treatment alone because parents could not accompany them.
Medical face-to-face appointments were switched to online and worried parents were unable to attend vital meetings together for emotional support as they were told devastating news.
One mother recalled how, when her GP could not help because of long delays due to the pandemic, she spent £170 on a blood test which revealed her son had leukaemia. Days later she watched as he walked alone to a bone marrow biopsy, because Covid restrictions prevented her accompanying him.
Another told of her brave daughter relapsing for the fourth time as the pandemic hit and the effect it had on her family.
Despite the valiant efforts of the NHS their new normal is increased isolation, delayed appointments and surgeries and new protocols making hospital visits an ordeal.
Last spring Rebecca Henderson was told her cancer had returned for a third time. She was first diagnosed with rhabdomyosarcoma in her leg back in 2014 when she was just eight. Once again the 15-yearold stoically underwent surgery in March, but when Covid struck she was told to isolate.
By last June Rebecca was once again undergoing chemotherapy, only this time under new Covid restrictions. Her mum Tracy, 47,
‘It’s hard to take in. I was in bits’
of Billingham, Co Durham, said despite eight years living under the spectre of cancer nothing could have prepared them for what lay ahead.
She said hardest of all is not being allowed to have more than one parent in hospital. Her husband, plasterer Paul, 52, is often on the other end of a phone line.
“When we heard Rebecca had relapsed I was told the news on my own. It’s so hard to hear this, try to take it in, ask questions and then drive home. I was in bits,” she said. She said she totally understood the need for precau
tions, but said things like phone calls instead of face-to-face meetings makes life tough.
“It’s disheartening for Rebecca. Her security blanket of meeting the doctors and nurses was gone.”
With new protocols in place, every time Rebecca becomes unwell she faces a three-hour wait in A&E before being admitted while she is checked for Covid.
“It’s frustrating for staff and parents, but it’s Rebecca who bears the brunt. Having cancer is hard enough as it is for her,” said Tracy.
Now the youngster is pioneering home-based chemotherapy set up for her by the Royal Victoria Infirmary in Newcastle, thanks to a new clinical trial. The mum-oftwo described it as a “game changer” which saves hours of travelling to and from hospital as well as treatment time on the ward.
As a primary school teacher, Tracy said the biggest effect on her daughter is that she has not been in school for the past three years.
“Covid just made it more difficult,” she said. “Rebecca was engaging in home learning but it left her weary, so she had to stop.
“With cancer you’ve got to pick your battles and this was a tough decision we had to make.”
When Kian Hamilton struggled to keep up on family walks and could not finish his meals his parents became concerned. He was also experiencing night sweats.
His mum Keri continued: “Then we noticed he’d lost weight and started dropping things.
“We thought he looked a little anaemic, so we decided to take him to see the doctor.”
When she took the 11-year-old for a check-up the country was just entering lockdown. The GP referred him for blood tests, but due to the pandemic they were taking weeks to organise.
“Of course we understood how the pandemic was affecting everything, so we waited,” Keri said.
“But the tests got more delayed and he was still so poorly. We started to worry and were pushing to get the tests done. It was incredibly stressful.” Keri, 42, decided to pay £170 for a private blood test. “I knew he was not right and I
couldn’t keep waiting for the GP so I decided to sort it out myself,” she said.
“Thank God I made that decision – it could be the most important £170 I’ve spent.”
Mum-of-three Keri said: “It was July when we were eventually told he had Chronic Myeloid Leukaemia. I was the only one allowed to go with him to Great Ormond Street Hospital.
“I had to watch him walk to his first biopsy on his own. He was so brave, he was very calm and didn’t cry. I just wanted to be there to hold his hand but I couldn’t. But I was on my own too, there was no one to turn to for support.”
Despite the family’s best efforts Covid entered their home in Billericay, Essex, in December.
Keri described that moment as “terrifying”, although Kian was the only one who did not catch it.
Now he faces the possibility of a lifetime of treatment, but initially he is on daily chemotherapy tablets for the next five years.
One ray of hope is elder brother Mason, 14, has been identified as a 100 per cent match should Kian need a bone marrow transplant. Keri said this was “brilliant news”.
She continued: “Kian is still having the ups and downs of treatment and side effects, but he started secondary school this month. We’re still trying to find a balance between keeping him safe and giving him normality.”
Sneha Dey Roy, 17, was diagnosed this March with High Grade Glioblastoma Multiforme in the front left part of the brain.
Sneha, of Milton Keynes, said: “The diagnosis was really sudden. I started getting migraines at the start of March. Then I couldn’t eat or drink without being sick.
“Because of Covid I went on my own to get checked out in A&E, but they did not keep me in.
“My eye was hurting so I also saw an optician. They said they could see something wrong when they looked at the back of my eye and on Saturday, March 13, I went to A&E again with my mum. They did further tests and found a tumour in my brain. We had gone in the evening and it was 10pm when we saw the doctor.
“It was the middle of the night when I was sent by ambulance to John Radcliffe Hospital in Oxford for more tests.
“I was in pain, but because of Covid Mum was not allowed to come with me in the ambulance.
“I had emergency surgery the next day at 11am. I didn’t see my mum before, but she was there when I woke up at 8pm that night.
“She was allowed to come back every day then, and her and my younger sister have been really supportive.”
Not being able to see the faces of doctors and nurses hidden behind masks has also been a challenge, said Sneha.
“I’m getting people confused, not being able to put names to faces – everyone looks the same.”
During the pandemic Cancer Research UK says it was forced to cut spending by £50million, from its previous level of £370million a year, as fundraising was hit.
The charity’s Paediatric Lead, Sheona Scales, said: “This is absolutely the most challenging time for young people with cancer.”
She said across the NHS, staff and researchers had “worked tirelessly” to ensure every patient received the best possible care.
But she said: “Due to the impact Covid had on fundraising we have been forced to cut expenditure, which means research spending is down. The cuts are short term and we are determined to remain the largest charitable fund of cancer research in the UK.”
Tracy said: “Rebecca has been on several trials and might not be here without that. To hear it has been affected is really worrying.”
Rebecca and Kian are supporting Cancer Research UK for Children & Young People, in partnership with TK Maxx, in Childhood Cancer Awareness Month. To find out more about the work visit : cruk.org/childrenandyoungpeople
‘This is the most challenging time’