‘RUBY IS OUR LITTLE MIRACLE’
Family were told to say their goodbyes two years ago when Ruby became seriously ill with cancer but now they’re all looking forward to spending Christmas together:
TO SEE bubbly Ruby Mugleston running around, getting excited about Christmas and promising to be on Santa’s nice list, it is hard to imagine that not long ago her parents were being warned to prepare for the very worst.
She was so desperately ill that her devoted older brother and sister were even brought to her hospital bedside to say their final goodbyes.
The first signs of illness were in February 2017, when Ruby was just two but, despite lots of tests and a lumbar puncture, doctors at the University Hospital of Wales in Cardiff, could not pinpoint the problem.
They thought she may be suffering from juvenile arthritis, but after weeks of not responding to treatment for that condition Ruby was transferred for more specialist care at the children’s hospital in Bristol.
Ruby’s dad Paul said: “It took a really long time to work out what the problem was, and she was just getting worse.
“When you look at pictures of her from this time you can see how ill she looks. Ruby just kept getting worse as her condition deteriorated and she was taken into intensive care. Her heart rate was really high and she hadn’t eaten for two weeks.
“In intensive care they had to intubate her and we weren’t allowed to stay all the time. Then the doctor called us in and I can remember every word of that conversation. He said: ‘This is not going to have a positive outcome.’ He told us there was a slim chance she would survive.
“We were advised to bring her brother and sister down to say goodbye to her.”
Ruby’s older brother Finley and sister Emily had been staying with their grandparents back home in Pontypool but came to see their sister after the advice from the doctors.
But then the doctors had a breakthrough, and diagnosed the toddler with anaplastic large cell lymphoma.
She was started on a course of aggressive chemotherapy and Ruby’s health started to improve almost immediately.
Paul says: “The diagnosis gave us a level of certainty that we hadn’t had until that point. Knowing what it was gave us a level of hope as there was treatment available.
“Within a week she was able to come out of high dependency and was able to be transferred to an oncology ward. There was still a long way to go, and shortly after she moved to the ward I caught a cold so wasn’t able to go and visit.”
Throughout the treatment Ruby, who turned five on Wednesday, and her family received help from Clic Sargent, which provides support to families facing cancer.
Thanks to its help the Mugleston family were able to stay in a Sam’s House, one of the charity’s Homes from Home in Bristol, where families can stay for free to be near their child.
“I don’t know how we would have functioned if we hadn’t had help from Clic Sargent,” says Paul. “I couldn’t afford to live in a hotel to be near Ruby at the hospital.
“Staying at Sam’s House made the whole thing doable, and Emily and Finley were able to stay with us at the weekends. We live more than 40 miles away from the hospital.
“Having to leave home at 7am, spend all the day at the hospital, and going home at 10pm you are running the risk of having an accident due to exhaustion or not seeing your child as much. Clic Sargent saved us from being in a disastrous situation.
“It was also really good to meet with other families who were going through the same things as us. There are communal areas in the house, where you could sit and chat and share experiences.”
After the treatment started Ruby went from strength to strength, and she is now back at school and wants to be a nurse when she grows up.
“It is amazing to see Ruby now and we are really looking forward to spending Christmas and New Year together,” said Paul.
“One of the low points was spending Christmas at the Ronald McDonald house next to the hospital in Cardiff. Ruby was only well enough to spend about 40 minutes away from the ward, and she wasn’t able to eat anything.
“We waited until the April and had a proper Christmas dinner with her then.
“Coming home is actually quite hard because you have lost that support network and you know the doctors and nurses are there to help, but Clic helped us with the transition.
“This Christmas we are staying at home and we can’t wait.
“Last year we were still so worried and constantly checking Ruby’s temperature, but we are more relaxed this year and can’t wait to enjoy it as a family.”
Mum Nicola said: “What can I say? She is my miracle. At one point we didn’t think she was actually going to make it, but it was a miracle and now she is here today and we get to spend Christmas together as a family of five and not a family of four.”