A little girl's headaches and clumsiness turned out to be a brain tumour - and her parent's actions saved her life with hours to spare. Lacey-Mae Spong, then four, started complaining of intense headaches and was frequently bumping into things.
However the optician and doctors said nothing was wrong - even though Lacey-Mae was also vomiting regularly, her parents say. When Lacey-Mae started screaming with pain, dad Rob Spong, 45, took her to A&E with her mother, Donna McClelland, 41.
Tests revealed she had a brain tumour - called pilocytic astrocytoma - and she was given urgent surgery to relieve the pressure caused by a fluid build up in her skull. Although Rob and Donna were told she might never regain her sight or walk freely by herself, Lacey-Mae joined reception class that year in 2017 having regained sight in one eye and improved mobility with the help of physiotherapy from the hospital.
Rob, a full-time carer, from Barry, Wales, warned other parents to stay vigilant and look out for symptoms. He said: "As a parent you know if there is something wrong with your child. I’m ready to be called an overprotective dad.
“Just keep an eye out and don’t be fobbed off, because the optician and GP said she was fine until we took her to A&E. They said that had I not brought her in when I did, she would not have survived the next day.
“When she was first diagnosed it was hard, because we didn’t expect it at all, it was a blur. That first moment of diagnosis is like you’ve been hit by a freight train - we didn’t expect anything that serious .
“It was a whirlwind. We took her in and within a couple of hours she was on an operating table in a hospital ward.
"It wasn’t until a few weeks later that it did hit home that it’s going to be like this for the rest of her life You just have to deal and get on with it.”
Lacey-Mae started complaining of terrible headaches, vomiting and bumping into things. But when Rob took her to the opticians, scans were clear and the GP did not flag anything serious.
Lacey-Mae was taken into hospital in Cardiff within a couple of hours where she had surgery to remove the mass in her brain. However, this caused a stroke which impacted the left side of her body, leaving her unable to see.
Lacey-Mae at the age of four spent 17 weeks in recovery in hospital and began to regain strength and part of the vision in one eye. Over the past six years, Lacey-Mae has undergone three courses of chemotherapy and has just a fourth round in May 2022, which she is due to finish in May 2023.
Donna agreed the experience was overwhelming. “We had to block a lot out of it out," she said.
"It was such a blur. At that point we had to pull ourselves together for her sake, because us being a mess wasn’t going to help.”
Rob and Donna have said Lacey-Mae’s attitude has helped them manage the impact her illness has had on their lives. “If she wasn’t as determined and hard as nails i don’t think me and mum would have survived," said Rob.
“She’s helped us through lots, she never sits and wallows.” Her positive attitude has allowed to make friends and do well at school.
“Lacey really enjoys school, and even when she feels poorly, she loves learning,” said Rob. "The school has been really great - they’ve supported her in learning braille and managing her mobility, with lots of support in other departments.
“She loves learning Welsh which she practises with all the Welsh speakers at the hospital in Cardiff.” However, the couple do worry about the impact Lacey’s illness has had on her childhood, as well as the ongoing uncertainty of her future.
“In many ways she hasn’t had a normal childhood, because she’s missed out on an awful lot, especially at the start.” said Donna. "We just try and concentrate on each day and to deal with any news we receive as best we can.”
Lacey-Mae has just started another round of chemotherapy, which will last for 18 weeks and is due to finish in May this year. “It’s a waiting game - waiting for the results, then waiting to see if it comes back," said Rob.
“There is always that chance it could go wrong. It’s a ticking time bomb, as we just don’t know if she will reach full adulthood. It is what it is - we wouldn’t help her by mulling over it, so we try to stay positive for her.”
