Louth toddler’s ‘nightmare’ brain tumour battle

Mum Dani with daughter Lacey, who is recovering well from her operation.
Mum Dani with daughter Lacey, who is recovering well from her operation.
  • Mum shares her story and thanks the Sick Children’s Trust for being her ‘lifeline’

A Louth mum has shared her inspirational story after living through every parent’s worst nightmare - being told her daughter had a potentially life threatening brain tumour.

Dani Spence, 26, realised that her toddler daughter, Lacey, was not very well after she kept falling over, and her knees would not bend properly.

Lacey underwent an MRI scan and, while Dani and her partner Alex were waiting for the scan results last July, they received the dreaded phone call asking them to go to the hospital immediately.

Dani said: “All of us raced to the hospital where we were taken straight to the paediatrician’s office. I clung to Alex’s hand as we were told that Lacey had a brain tumour and it could be cancerous.”

As the tumour was only tiny at this stage, the family was told to go home and wait for a referral from Sheffield Children’s Hospital, as the consultants needed time to establish whether the tumour was growing or not.

Three months later, while waiting for the results of Lacey’s second MRI scan, Dani received a call from Lacey’s nursery saying she had been violently sick. Concerned, Dani immediately rang the hospital to chase up the MRI results.

I was left on my own with the thought that I would never see my daughter alive again.

Dani Spence

Dani said: “This was the earth shattering moment that I found out that Lacey needed to have brain surgery. The tumour was growing.

“In the blink of an eye we were in a hotel in Sheffield, over two hours from home, waiting for the hours to pass until Lacey’s lifesaving operation.

“I was terrified, but I knew I needed to be brave for my little girl.”

Lacey was in surgery for 10 hours, but it was not a straightforward procedure.

Her blood kept clotting and in the end the surgeons had to stop because her condition was deteriorating. They had not managed to remove all of the tumour, and when Lacey finally came out of surgery her airway was very swollen and she was unable to breathe.

Lacey was moved to the High Dependency Unit, where she grew weaker until the decision was made to admit her on to the Paediatric Intensive Care Unit and ventilate her.

Dani said: “As Lacey was wheeled away on a trolley, I was left on my own with the thought that I would never see my daughter alive again.”

In the days that followed, Lacey became stronger and was moved back to the High Dependency Unit and then on to the hospital’s dedicated neurosciences ward.

Lacey’s condition deteriorated once again, due to an accumulation of fluid around her brain which required two more operations to resolve, but she was soon on the way towards a real recovery.

Further tests showed that, against all odds, the remaining part of Lacey’s tumour was benign rather than cancerous, and she was discharged just after Christmas. She is now growing stronger, and she is having physiotherapy and occupational therapy at home.

Dani has thanked all the medical staff who helped Lacey through her ordeal, and has also given special thanks to the Sick Children’s Trust for providing accommodation near the children’s hospital, which saved Dani from having to make the long, expensive daily round trip between Louth and Sheffield.

Dani said: “The accommodation at Sheffield Children’s Hospital became my lifeline. Even though they are within the hospital grounds, it doesn’t feel like you’re in that environment. It feels like you are at home.

“It was the staff that reassured me that everything would be okay, and were there as a shoulder to cry on when it all got too much. Without The Sick Children’s Trust I would have been waiting alone, so I can’t thank them enough.”

• Visit www.sickchildrenstrust.org for more information.