A nine-year-old girl has been diagnosed with a rare form of bone cancer – just three months after she was told the wrist pain she was experiencing was a sprain.
Maisie-Leigh, of Preston, Lancashire, has just begun gruelling treatment for Ewing sarcoma, starting with nine rounds of chemotherapy, followed by surgery, then another five rounds, with scans along the way.
Her mother Aimee Marsden, 30, told MailOnline she took her daughter to A&E in October last year, where she was diagnosed with a sprain after complaining of a sore wrist, following crashing her bike two weeks prior.
But Maisie-Leigh then spent the next two months having sleepless nights, constantly letting out ‘an almighty scream cry’ of pain, her mother said, culminating in an extremely swollen arm in the New Year. They returned to A&E where they got the devastating news a month later.
And after only two days of chemotherapy so far, the little girl is already wiped out, her mother said: ‘Usually, she’s running around, bouncing off the walls, running outside and playing and stuff, whereas we got back and already, she’s struggling to walk, she’s complaining that her legs are hurting. We’ve had to get her a wheelchair because she’s struggling already.’
As her daughter has ADHD, the full-time mum added: ‘She’s laying on the settee which, with Maisie, she was bouncing off the settee… it’s like watching her just fade away.’
Maisie-Leigh’s cancer diagnosis follows a lifelong battle with her health – she was born prematurely and was later diagnosed with audio and visual processing disorder, ADHD and chronic asthma, which has seen her hospitalized. On one occasion, a bout of chickenpox saw her rushed to hospital, close to cardiac arrest.
Her mother – who has started a GoFundMe page to pay for transport to and from hospital and measures to make Maisie-Leigh comfortable, including hats for her now bald head – said: ‘Since she’s been born, it’s literally been one thing after another. She’s never had a break.’
Maisie-Leigh (pictured), of Preston, Lancashire, has just begun gruelling treatment for Ewing sarcoma, starting with nine rounds of chemotherapy, followed by surgery, then another five rounds, with scans along the way
After only two days of chemotherapy so far, the little girl is already wiped out (pictured), her mother Aimee Marsden, 30, told MailOnline: ‘She’s laying on the settee which, with Maisie, she was bouncing off the settee… it’s like watching her just fade away’
Maisie-Leigh (pictured before her diagnosis) was diagnosed with a rare form of bone cancer called Ewing sarcoma at the end of January – just three months after she was told the wrist pain she was experiencing was a sprain
Maisie-Leigh’s wrist pain first began in October last year, her mother said: ‘She crashed her bike into the kerb but she hadn’t fallen off it fully. So, we thought, “Oh, it’s just a sprain or whatever”, so obviously bandaged it up, got on with it.’
But two weeks later, she was still complaining it hurt so they went to the doctor, who then sent them to A&E. After an X-ray there, she said: ‘They said, “Oh no, it’s just a sprain, off you go”, basically.
‘So, we were literally just given obviously paracetamol for the pain, we had got her a wrist splint which obviously, I think would have been tight around the wrist – it helped.’
But Maisie-Leigh’s pain continued, her mother said, right up until Christmas: ‘She wasn’t sleeping because she was crying in pain. She was crying throughout the day, saying it was hurting. We had to pick her up from school three times because school rang saying she was in pain.’
She added: ‘She was just crying all through the night. She’d be asleep then all of a sudden, you’d just hear this almighty scream cry.
‘There was just no soothing her. It didn’t matter what we did. The paracetamol wasn’t touching it and then because she’s got asthma, we couldn’t really give ibuprofen.’
Ms Marsden felt really helpless: ‘I just kept saying to Maisie, “The hospital said it was a sprain, there’s nothing much more I can do for you”.’
In the New Year, when her daughter was still having sleepless nights, the mother realised just how bad things were getting at her nephew’s birthday party: ‘She was quiet the whole time at my sister’s and that’s not Maisie at all. She’s got ADHD so she’s usually bouncing off the walls.’
Maisie-Leigh’s wrist pain first began in October last year, her mother said: ‘She crashed her bike into the kerb but she hadn’t fallen off it fully. So, we thought, “Oh, it’s just a sprain or whatever”‘
But Maisie-Leigh’s pain continued, her mother said, right up until Christmas: ‘She wasn’t sleeping because she was crying in pain’
She looked at the young girl’s arm and she was shocked by what she saw: ‘Obviously, I’d looked previously at the arm and there was nothing there, and it’s only then when I’ve gone and looked again to see what has come, I’ve noticed just below her elbow, the whole arm was swollen.’
Ms Marsden then took her daughter straight to A&E that night, January 3, where they did more X-rays and raised the possibility it might be a fracture.
They waited a week to get into the fracture clinic, where there was another X-ray, after which two consultants decided Maisie-Leigh needed blood tests and an MRI scan.
At this stage, a nurse broke the news it could be more than a sprain or break: ‘He said at that point, “There could be something in the bone, it could be an infection, it could be bone disease.” So, at that point, my mind was racing. I ended up bursting out in tears.’
Around a week later, they had the MRI scan and were told to come back in a week after that. During this time, Maisie-Leigh was hospitalised because ‘she was in so much pain’.
It was then – on January 29, just under a month after they had returned to A&E – they received the devastating news it was likely cancer, specifically Ewing sarcoma.
When they were told, Ms Marsden said: ‘My mum and I literally burst out crying.’
Ewing sarcoma is a rare type of bone cancer, mostly found in those aged between ten and 20 years old. Only around 90 people are diagnosed with it in the UK every year, according to the Bone Cancer Research Trust.
It was then – on January 29, just under a month after they had returned to A&E – they received the devastating news it was likely cancer, specifically Ewing sarcoma
When they were told, Ms Marsden said: ‘My mum and I literally burst out crying’
The consultant sent off all the paperwork, including biopsy results, to another hospital that day, just to be sure her diagnosis was right – and two weeks later, on February 19, the awful news was confirmed.
But it was difficult waiting for the confirmation, Ms Marsden said: ‘It was horrible. It was just the not knowing, this consultant telling us, “We’re looking that it could be cancer but we need this biopsy… to clarify”.’
Prior to it all, the family had booked a holiday to Marrakesh, Morocco – which happened to fall in the period of time they were waiting for the final diagnosis confirmation. Ms Marsden explained: ‘Obviously, we had to ask permission, was it OK for her to fly? Are we OK to take her?’
And ‘luckily’, doctors said, ‘”Go, take her, at least let her enjoy it”‘. With it looking like the confirmation would come after their return, the family decided they would let Maisie-Leigh enjoy one last trip away before that.
But it did not turn out that way, her mother explained: ‘The day we landed [in Marrakesh], my phone was going, “Ping, ping, ping”, and I had all these missed calls and voicemails.’
They ended up on holiday, having just had it confirmed their daughter had cancer – which felt very strange, she said: ‘So, thinking we were going to have the results once we’d landed home, we actually had the results the day we got there. But we literally just made the best out of it.’
Looking back, it was really important to give Maisie-Leigh that final time away before her exhausting treatment began, Ms Marsden said: ‘She absolutely loved it.’
They went to hospital almost immediately after they returned from holiday to discuss treatment options. It was decided she would have nine rounds of chemotherapy, followed by surgery, then another five rounds, with scans along the way.
The consultant sent off all the paperwork, including biopsy results, to another hospital that day, just to be sure her diagnosis was right – and two weeks later, on February 19, the awful news was confirmed
It was decided she would have nine rounds of chemotherapy, followed by surgery, then another five rounds, with scans along the way. Pictured: Maisie-Leigh before her diagnosis
Maisie-Leigh officially started chemotherapy on March 5 – and it has been ‘horrible to watch’ her undergo treatment, Ms Marsden said: ‘We’ve had random bouts of sickness where she’s literally just walking and then she’s just throwing up.
‘She’s literally just sleeping all the time… We’ve had a few nights where she’s literally crying in pain because her head’s hurting.’
The little girl also donated 14 inches of her ‘long, brown, natural curly hair’ to the Little Princess Trust before she began chemotherapy, her mother said: ‘She was more than happy to donate her hair to help another little girl.’
Maisie-Leigh has now completely shaved her hair, after it began thinning after just one round of chemotherapy – and the family just received a wig, donated by the Little Princess Trust, a few days ago. Ms Marsden said: ‘She loved it. She goes around saying, “Oh, I look fresh!”‘
Ms Marsden explained how her nine-year-old daughter has reacted to the whole situation: ‘She doesn’t quite understand the whole thing of it right now. She understands, she’ll tell people, “I’ve got cancer”, but she doesn’t really quite understand the actual whole logistics sort of thing of it.’
Her mother reckoned that could be for the best: ‘I’m just quite glad that she doesn’t actually have the full understanding of it all.’
But even though the full emotional impact of it has not quite hit Maisie-Leigh yet, chemotherapy has really affected her physically, Ms Marsden said, even after just two days of it starting on March 5, before her rest week last week.
Her mother said: ‘Usually, she’d be non-stop eating. But after this first lot, obviously she only had two days of it last week, and it literally just wiped her out completely.’
Maisie-Leigh’s cancer diagnosis follows a lifelong battle with her health – she was born prematurely. Pictured: Maisie-Leigh as a baby
Ms Marsden said: ‘Since she’s been born, it’s literally been one thing after another. She’s never had a break’. Pictured: Maisie-Leigh as a baby, after she was born prematurely
She is even tired on her scheduled rest week, her mother added: ‘She’s got a bit of a spring back in the morning, but come afternoon, she’s wiped out and lying on the settee and not moving and falling asleep.
‘The smiley, happy, bouncy girl… to now, she doesn’t have the mobility she had, her legs are more tired than they used to be, and she’s laying on the settee which, with Maisie, she was bouncing off the settee.’
As Maisie-Leigh has only done two days of chemotherapy so far, her mother said: ‘I’m dreading next week because next week is her first full week of chemo, Monday to Saturday.’
She said: ‘The bouts of sickness, I don’t mind, but it’s watching her not being able to do more, just and just sleeping and eating-wise, saying her mouth hurts and her throat hurts.’
Maisie-Leigh struggling to eat is one of her mother’s main worries, she said: ‘Obviously, with chemo, it’s not going to make her want to eat and stuff – it’s like watching her just fade away because she’s very petite as it is.’
Ms Marsden also explained how Maisie-Leigh’s two siblings, Millie-Rose, 10, and Reggie, four, have reacted to it: ‘Her little brother, he’s got autism so he’s oblivious to any of this, luckily enough!
‘But her big sister, they used to fight like cat and dog and since this, she’s been so loving and caring towards her.’
Maisie-Leigh has struggled with her health her whole life. Ms Marsden said: ‘Since she’s been born, it’s literally been one thing after another. She’s never had a break.
She was later diagnosed with audio and visual processing disorder, ADHD and chronic asthma, which has seen her hospitalized. On one occasion, a bout of chickenpox saw her rushed to hospital, close to cardiac arrest. Pictured: Maisie-Leigh as a baby, after she was born prematurely
‘Every time she goes out, I wrap her in bubble wrap because she’s had broken bones and stuff from the simplest little things and it’s like she’s never had the chance to be a child, to go out and do what kids her age do.’
The family’s GoFundMe page to fundraise for transport to and from hospital appointments and generally making Maisie-Leigh comfortable has raised £900 so far.
The mother hoped that sharing their story would help to raise awareness of the rare bone cancer: ‘At least I can help other people and make people aware. This is the second rarest cancer.’
And all Maisie-Leigh’s data is being inputted into a research study currently being conducted to find out more about Ewing sarcoma – which the family hope will help other children beat the disease too.
A spokesperson for Lancashire Teaching Hospitals NHS Foundation Trust said: ‘Whilst we cannot comment on individual cases due to issues of patient confidentiality, it should be noted that some conditions are complex and are not always diagnosed immediately.
‘If any patient has ongoing concerns about their or their child’s health, their first port of call should be their GP who can refer them into the most appropriate place for assessment or treatment, which often isn’t A&E.
‘We are always sorry if patients or parents have any concerns about any aspect of their own or their child’s care at any of our hospitals and would strongly encourage them to get in touch with the Patient Advice and Liaison team who can ensure that an investigation takes place as quickly as possible.’
A spokesperson for Alder Hey Children’s Hospital Trust said: ‘We are unable to comment on an individual case.
‘However we can confirm that it can take up to two weeks to confirm a cancer diagnosis due to the thorough process involved in ensuring accuracy.
‘After initial tests, this timeframe allows for additional necessary investigations sometimes involving specialist services.
‘This ensures that the diagnosis is as accurate as possible before any treatment decisions are made. The two week timeframe is standard process in the UK.’
All relevant hospitals and NHS trusts have been contacted for comment.
