Parents told daughter had 'bug or allergic reaction' before shock diagnosis
'I knew it wasn’t an allergic reaction or a virus. I just knew'
The parents of a Cheshire schoolgirl were told their daughter was suffering from "a bug or a reaction to something" before blood tests revealed the devastating truth. Olivia Butler, now aged seven, was just four years-old when she was diagnosed with acute lymphoblastic leukaemia (ALL) - a cancer of the white blood cells – in 2023.
After waking up vomiting with swollen eyes and a high temperature, the family from Weston, near Crewe, were told their eldest child was suffering from hay fever or an allergic reaction. When Olivia didn’t improve, blood tests revealed the devastating diagnosis of cancer.
As part of her treatment, she enrolled onto the UK arm of the ALLTogether-1 clinical trial, funded by Cancer Research UK, which has recruited patients from across Europe to investigate how to treat acute lymphoblastic leukaemia more effectively. The overall aim of the trial is to give each child or young adult the right amount of treatment to cure their leukaemia and stop it from coming back while keeping the side effects as low as possible.
Following the treatment, which included two years of chemotherapy treatment at Alder Hey Children’s Hospital, Olivia is now cancer free and being closely monitored with regular blood tests. Recognising her courage throughout her treatment, Olivia has now received a Cancer Research UK for Children & Young People Star Award.
Olivia’s parents - Sarah, 39, and Dan, 37 - nominated her for the award. Sarah, also mum to three-year-old twins, Theo and Oliver, said: "I remember her waking up one day and she looked jaundice. She had swollen eyes and then she got worse, coughing and being sick with a high temperature.
"Over a few days we took her to our GP and A&E and everyone thought it was a bug or a reaction to something. I didn’t think for one minute that it was leukaemia, but I knew it wasn’t an allergic reaction or a virus. I just knew. A few days later when she hadn’t improved, I took her back to the hospital and they took some bloods.
"Then at around 10pm they came and broke the news to us. We were transferred to Alder Hey and stayed there for three weeks while she started her first round of chemotherapy. We’d just moved house, and the twins were only 18 months old. Thankfully my sister came to stay to help out. The boys were so good with Olivia and just cuddled her all the time, even though they were so young they understood that she was very poorly.”
As part of the ALLTogether-1 clinical trial Olivia was treated with a number of chemotherapy drugs given in different combinations. Her dad Dan recalled: “They tailored Olivia’s treatment to suit her and looked at the risk of the leukaemia coming back and planned the treatment based on this risk. Olivia had T-cell ALL, so she was in the high-risk category, so we opted to stay on chemotherapy for the longest period of time to be sure to reduce the chance of relapse.
"We were over the moon when the bone marrow check came back. The lead consultant came running into the room to see us, she said she had to come and tell us herself. She told us she’d never seen this kind of result in her career, zero detection in six weeks with this type of ALL. Olivia’s a little miracle.”
Olivia had her last chemotherapy in the summer and rang the bell to end two years of treatment. Sarah added: “Olivia lost all of her hair due to the chemotherapy, that really hit me, it broke my heart the most about all of this. The first day we got home she was sat in front of the mirror brushing her hair before it fell out. We got her some little bandanas, and my auntie crocheted her a hat. She did so well, and it’s grown back now, she’s actually about to have her first haircut since it grew back.
"She is our little warrior. She has smiled throughout all of this. Some people refer to their cancer as a journey, but we called it ‘Olivia’s adventure’. She has been so brave and taken everything in her stride. She lost her mobility and had to work with a physio, who she still sees to help with some day-to-day struggles.
"She’s just started gymnastics too; she’s doing so well. As soon as we heard about the Cancer Research UK for Children & Young People Star Awards, we put Olivia forward. She took her star award into school recently to show it off in assembly, she’s made up with it. Now we just can’t wait for a normal family Christmas.
"It’s not been the same since she was diagnosed. The first year we ended up being in Leighton Hospital on Christmas Day and we all did presents and had dinner together at the hospital because she got an infection and had to stay in for a few days while they got her temperature under control. Last year was very low key and Olivia was still in treatment, so this year we are doing everything we can to make it special. We did the Polar Express last weekend, and we can’t wait to make so many amazing memories to make up for lost time."
As well as a star-shaped trophy, Olivia also received a £50 TK Maxx gift card, t-shirt and a certificate. Her brothers both received a certificate too. Cancer Research UK spokesperson for the North West, Jemma Humphreys said: “We’re committed to driving forward progress to ensure more children and young people can live longer, better lives, free from the fear of cancer. After everything Olivia has been through, it’s been an absolute privilege to celebrate her incredible courage with a Star Award.
"A cancer diagnosis is heart-breaking at any age, but it can be particularly difficult for youngsters - especially when many may experience life-long side effects from their treatment. That’s why we’re funding dedicated research to find new and better ways to beat this devastating disease.
"The Star Awards are a wonderful way to give these extraordinary children the special recognition they truly deserve, so we hope people in Merseyside get nominating now."
Nominate a child or young person for a Star Award at cruk.org/starawards