The Worst Pain of All. Ella and the Dixon Family
There is a scale for rating pain called the McGill Index. Right at the very top is an agonising condition Ella Dixon from Southland is still working through in her life.* It started with a small rugby injury that got re-tweaked. It was quite minor, but in very rare cases the human nervous system over-reacts to a small injury, as if it was massive trauma.
“Her foot and lower leg quickly changed colour and became cold. Incredibly painful,” explains Ella’s mum, Megan. This is Complex Regional Pain Syndrome or CRPS. Ella calls it Crips and this brave 15-year-old is courageously trying to beat it and manage its unbelievable levels of pain and the breakdown of important bodily functions.
Ella’s pain was so intense, her local hospital could not manage her suffering. So Ella was transferred to the care of the Pain team in Auckland.
“We would have travelled anywhere,” Ella’s mum said, but they had no family support at all in Auckland. What they did have, though, was the ‘home-away-from-home’ at Ronald McDonald House.
“How amazing that place is,” Megan says. “We wheeled our bags over from hospital – because it’s such a short walk. Those amazing women, they are just incredible.”
Megan would have been happy to sleep in a room near the hospital. Instead, she was overwhelmed by her lovely, comfortable haven so close to her daughter in hospital. She was also blown away by the other facilities provided for families – “Those kitchens!” – and the teams of volunteers from businesses and organisations coming in to cook. “I just constantly said, oh my gosh, this is amazing!”
Ella must have been hoping to be out of hospital by Easter, but that was not possible. To cheer her on, the Ronald McDonald House team left some treats at Megan’s door to take to Ella – “the biggest bag of Easter eggs I’ve ever soon! Unbelievable!”
“I took it over to Ella. She loved handing them out. She said, ‘Happy Easter from Ronald McDonald House’ and gave them an Easter bunny.” Ella made the coolest Thank You video, saying ‘Oh my gosh, Ronald McDonald House, you have made my Easter.’
Then, when it was her birthday, Volunteer Fran made Ella a beautiful birthday cake. Fran has done so much for this young girl who has suffered such intense pain.
If her parents had been staying in a motel room, Ella could never have left hospital to visit with them. The wheelchair, the taxi, the trip, the barren motel room – it would all have been too much. Instead, she was able to leave the hospital and spend time at Ronald McDonald House. “She got to know and love that place – and the staff,” says her Mum.
CRPS is a chronic condition, but it does respond, as it slowly has for Emma. ‘We never in our wildest dreams thought we would need to stay at Ronald McDonald House for three months!” Very few families could afford such a long stay in a motel while their child was in hospital – but “it’s amazing how Ronald McDonald House made it all possible,” says Megan.
CRPS may be the highest pain on the McGill index, but being in hospital far from her parents would have been unimaginable. The Dixon family was able to put the worst pain of all far behind them and would like to thank Ronald McDonald House for keeping their family close.
*It reaches approx 42 out of 50 on the McGill Pain Scale, higher than non-terminal cancer, higher than amputation of a finger without anaesthesia.