After watching the dedication of the staff at Great Ormond Street Hospital as they cared for her gravely ill son Caine, Donna Ross from Castledawson tells Local Women how she has been inspired to raise funds for the world-renowned hospital
When her son was diagnosed with epilepsy, Donna Ross was understandably upset but consoled herself that it could have been so much worse.
So, when she received a phone call just a few months later to tell her that he actually had a brain tumour, she was totally devastated.
“You know you hear people say their legs went from under them, well I know what that is like, my legs did actually go,” explained the mum-of-four.
“I was screaming and bawling my eyes out, I was inconsolable.”
Donna was at her home in Castledawson with her youngest son, Caspar - just two at the time, when she received the distressing news about Caine in November 2015.
Donna and her son Caine who are fundraising for Great Ormond Street where Caine received treatment for a brain tumour.
“I had left the other boys off to school and was getting Caspar in the bath,” she continued.
“I answered the phone and it was the consultant telling me that Caine actually had a brain tumour, that he would need surgery, chemotherapy and radiotherapy and we would have to get him to the hospital immediately.
“It was totally unexpected, we had no idea they were even looking at the possibility of a tumour so to get that phone call was horrendous.”
Donna immediately rang her husband, 45-year- old Darryl, to tell him the news and he raced home.
They decided against taking Caine out of school straight away to go to hospital.
“We didn’t want to scare him,” said Donna.
Instead, they waited until the evening to take him to Antrim Area Hospital, where doctors began to carry out a raft of tests on the youngster.
It turned out that he had a DNET tumour, meaning that it would be possible to operate to remove it and Caine would not need chemotherapy or radiotherapy.
However, the surgery is so specialised that it is not offered in Northern Ireland, so Donna began research to find the best hospital she could to treat her son.
“I discovered that Great Ormond Street is one of the best, so that’s where we wanted him to go,” she said.
Caine first started to appear unwell some months before he was diagnosed with epilepsy in June 2015 – complaining of being sore and tired.
Donna, who turns 47 this month, continued: “Caine was in bed sleeping when his older brother, Christian, came running down the stairs and said Caine was making funny noises.
“Darryl went straight up and called me in and Caine was just lying there face down in a pool of vomit.
“It was so scary, it was a terrible thing to see, especially for Christian.”
The schoolboy was rushed by ambulance to hospital where his condition was stabilised and Donna and Darryl returned home to be with their other three sons.
However, just a few hours later, they received a phone call from the hospital – Caine was having another seizure.
This time, doctors struggled to bring him out of the seizure and they warned they may have to transfer him to the Royal Belfast Hospital for Sick Children.
Donna said: “They said if he didn’t come out of the seizure in the next hour or so he would have to go to Belfast and they would have to put him on a ventilator.
“It was horrendous, I couldn’t believe what they were telling me.”
Fortunately, Caine recovered from the seizure and was eventually allowed to go home.
He made several journeys to Great Ormond Street Hospital in London and finally, in January this year, he underwent an almost seven-hour operation to have the mass removed from his brain.
“They had warned us not to fall apart until Caine was under the anaesthetic, which was really hard,” continued Donna.
“As we were on our way to the theatre, Caine got really scared and he was crying and saying he didn’t want to go, but I had to be firm with him and tell him he had to.
“It was such a difficult thing for me to do. “I was so scared myself before he went down to theatre because, although there is always a risk with every surgery, I was terrified it would affect his speech or his movement.
“I was frightened we wouldn’t get our son back but I couldn’t let Caine see how worried I was.
“I held him while he was put under and I can’t describe how it feels when your precious child goes limp in your arms.
“My sister had come over to London with us and she said she could hear me wailing outside, I just went to pieces.”
Describing the time Caine was in theatre as the longest six hours of her life, Donna was relieved when the surgeon emerged to tell her the operation had gone smoothly.
She was even more overjoyed when Caine started to come around from the anaesthetic and showed no signs that he had been adversely affected by the operation.
“We are now waiting for him to go back to London and have more scans to find out whether the operation was a complete success, whether they have been able to get all of the tumour,” continued Donna.
“In my head, I know it is a possibility that some of it might still be in there but my heart says the operation worked.
“The alternative, if they didn’t get it all, will be that he will need more surgery every so often throughout his life.
“But I try not to think about that.
“When I look at Caine now compared to what he was like before his surgery, he is doing so well and he looks a lot healthier.
“It’s funny because I didn’t realise how unwell he was until he got better and he started to look a lot better.
“We are raising money for Great Ormond Street now because we simply cannot thank them enough for what they did for Caine and how well we were all treated while he was there.
“They were amazing and I feel like I couldn’t have got through it without them.”
The Ross family is raising money to donate to Great Ormond Street Hospital to help it to purchase a new iMRI scanner in tribute to the dedication of the staff who treated Caine during his time there. For information about fundraising events or to make a donation, log on to the Caine’s Journey to Great Ormond St Facebook page.
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