A mother has spoken of the heartbreaking moment she sang to her 'incredible' little girl as she peacefully passed away in hospital. Evelyn Cooper had spent much of her childhood in and out of hospital beds and was just six when her life was tragically cut short on Sunday (August 21) following a battle with aggressive cancer and a deteriorating lung condition.
Mum Caroline, 30, said her baby girl was born healthy. What she could have never predicted was the battle that was to follow - caring for her daughter as she bravely fought off an aggressive form of cancer before spending the last years of her life hooked up to ventilation machines and slowly deteriorating due to a lung condition.
Paying tribute to her daughter, three days after her passing, Caroline told the Manchester Evening News how Evelyn was 'absolutely hilarious' and 'amazing and sassy'. "She was so clever and bright," the mum, from near the city centre, added. "She was hilarious and absolutely amazing."
A fundraiser has been started to help financially support Caroline at this time, as she has spent six years being her daughter's full time carer. Donations can be made here.
Evelyn had spent most of her years in and out of hospital wards. The first two years of her life saw the little toddler face torturous rounds of chemotherapy, followed by operations to remove her tumour, a stem cell transplant and then further rounds of radiotherapy and immunotherapy to follow.
Receiving the devastating news of Evelyn's tumour is a period that Caroline could now only describe as 'a blur'.
"It was just heartbreaking and so scary. I had no idea what was going on, it was the unknown of what it meant and not knowing how she would respond to any treatment," Caroline said.
"She was born perfectly healthy from what I was aware and everything seemed fine. Then when she was around nine-months-old, I noticed she had a small lump on her eye. I took her to the hospital and at first they thought it was an infection.
"I took her to Royal Manchester Children's Hospital because the lump continued growing. Then they told me she had stage-four high risk neuroblastoma, which is a very aggressive form of childhood cancer. From what I can remember, it was just a blur at first.
"She was so young, and it was so difficult with her being tied to tubes and IVs all the time. We were in and out of hospital a lot."
Little Evelyn given the all-clear as mum Caroline tried to return to a 'normal life'
There was some light ahead. As Evelyn turned two, in July 2018, the family were told the treatment had proved successful and they were given the all-clear. Although the toddler had to continue to visit hospital for monthly scans during her remission, Caroline said she tried to live a 'normal life' and was determined to make memories with her little girl.
One of those memories saw the pair jet off to Disneyland, as a group of mums she had met previously through a Facebook group fundraised for the trip. However, Evelyn was still facing battles each day due to the harsh impact from her treatments.
"When she got the all clear, we were just trying to get back to some sort of normal life. She started nursery, we went to Disneyland and tried to make as many memories as we could in case it [her cancer] came back."
"She was left with severe reflux and had a severe aversion to food," Caroline said. "She needed a feeding tube through her nose, and she would vomit sometimes multiple times a day. This went on for about two years and we kept trying different medications but nothing worked.
"The doctors suggested it would be best for her to have a peg feeding tube, which would be surgically directly into her stomach. When she was four, I took her in for the surgery and the doctors then realised her oxygen saturations were extremely low and they didn't know why."
Further assessments and scans revealed Evelyn had fibrosis scarring on her lungs and Bronchiectasis, with the effects potentially worsened by her chemotherapy treatment years earlier. Doctors had previously always been transparent with Caroline about the high chances of Evelyn relapsing.
'I spent months living in hospital with her. It just became normal'
From then on, Evelyn's condition continued to deteriorate - her lung capacity decreased and she started to rely much more heavily on ventilation machines in order to survive. She started on high flow oxygen at home and was regularly returning to hospital, again and again.
"Her lungs weren't growing with her body and they were basically getting stiffer and stiffer," said Caroline.
"Out of the last 18 months since where she had been diagnosed with the lung condition, I probably spent about 10 or 11 of those living in hospital with her. It just became normal life for us.
"A couple of weeks ago before she passed away, respiratory consultants and ICU consultants told me she was stuck on the ventilator. At that point she had been on it for about six weeks.
"The amount of oxygen she needed was so high. The doctors told me she also had CO2 readings so high that they couldn't believe she wasn't unconscious. She would still manage to get through day to day, she was just absolutely incredible.
"She was on very high pressures towards the end, and the ventilators were doing all the work for her. She couldn't speak but she learnt how to tell me what she wanted by pointing or mouthing things. She was very expressive.
"And if I wasn't around, all she wanted was for a nurse to hold her hand and give her a cuddle."
Caroline sang to her little girl as she 'passed away peacefully'
Caroline said that she 'knew the end was coming' because of how much Evelyn had started to deteriorate.
"I remember I was lying in the hospital bed with her one day, because I used to just get in and cuddle with her, and I had just been told there was nothing else they could do. She was going to deteriorate until her heart failed.
"I was having a cry and I remember she started stroking my arm and tapping me. She was the one trying to comfort me."
A popular face among the nurses on the ward, feline-obsessed Evelyn was even allowed a cat to come and join her on her hospital bed before she passed.
Evelyn was just six when she died on Sunday, August 21 at Manchester Children's Hospital. "I was laying in bed singing to her when she passed peacefully," Caroline added.
Following her death, close friend Hannah Cook started a fundraiser to help financially support Caroline at this time, as she has spent six years being her daughter's full time carer. Donations can be made here.
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