A mum of seven has issued an urgent warning to other parents as her young daughter was diagnosed with a brain tumour after she kept falling out of bed.
Lisa Provart lives in Cheshire, England and first became worried about her daughter Imogen after realising that she was struggling to walk properly - the little girl would frequently tumble out of bed and be ill. Soon after her symptoms started to appear, the four-year-old experienced a near-fatal seizure and was taken to hospital. Once there, a CT scan revealed the worst with doctors diagnosing Imogen with the rare brain tumour craniopharyngioma.
Speaking to NeedToKnow.co.uk, 45-year-old Lisa said: "We went to Wales [on a trip] and she kept falling off the bed and being sick. She wasn’t quite normal, she was walking slowly but had broken her leg three months before. We had gone to pediatricians, back and forth to the GP, and they suggested changing her shoes. In hindsight, I should have gone to A&E after she fell from the bed. She had a seizure that night and nearly died.”
With her parents immediately calling an ambulance, Imogen was rushed to hospital. She said: “It was horrific, my whole world crashed down. Everything changed in that instance and I wanted to be swallowed up. I knew they would find something. “We were told then and there that it was a mass on her brain. It [your child being sick] becomes everything, there are so many questions and we didn’t know anything.”
Following the scan, Lisa and her husband Andrew, 46, were immediately referred to Stepping Hill Hospital in Stockport on 1 September 2022, where a neurosurgeon examined Imogen.
She said: “She was so terrified that we thought she’d had a stroke. Imogen wouldn’t go near anyone and, as things continued, doctors had to sedate her to treat her.”
Having spent a full week in hospital, the parents were told that her mass was cystic. Cystic tumours can develop anywhere in the body and are a build-up of fluid; although mostly non-cancerous, these can develop into cancer, as it has in Imogen’s case.
Unfortunately, due to the placement of the little girl’s tumour, Lisa says the parents were told it cannot be safely removed – with Imogen constantly having to get the cyst drained instead.
She said: “She can’t have it [the cyst] removed as it would be like removing chewing gum. It sits near the hypothalamus, which controls hormones so she is losing so many of them.
“Imogen's tumour sits on the pituitary gland in her brain – her hormones from this are failing so she needs to have growth hormone, thyroxine and hydrocortisone replacement. It’s also pressing on her optic nerve so she is now blind in one eye and can’t see up or down.”
After 20 days, Imogen was finally released from hospital. Since her initial diagnosis, she has undergone 15 operations – from draining cysts to replacing shunts placed in her brain.
She has a full body scan every three months and a fast scan every seven weeks, as well as fluid drained regularly, and is also undergoing proton radiation, which targets the tumour – but this can take up to two years to work. Fortunately, her tumour is low grade, giving her a better prognosis than others, with proton radiation having a 92 per cent success rate.
Despite initial fears, Lisa says her little girl has become a brave warrior, taking everything in her stride. She said: “She absolutely hates it but she gets on with it.
“Imogen is so brave. She’s had about 80 or 90 MRI scans now and she is getting wise to it. I feel apprehensive about her future, she will always need full support and care. This journey is so emotionally draining.
“I am not the same person I was three years ago, it is devastating to watch your child fight and not be able to make it better.” Working with the Brain Tumour Charity, Lisa urges parents to keep an eye out for warning signs and trust their gut.
She said: “Sometimes it can be just a headache or their eyesight may be a bit off, or they might fall out of bed, like Imogen did. Go to your GP and be persistent.
“As horrific as this situation has been, it has made me a much braver person.” Despite everything, Lisa and Andrew have the support of their six other children, Anna, 21, Luke, 18, Lydia, 16, Isabel, 14, Ashley, 10, and Violet, 3.
She added: “It impacts every one of them, emotionally they suffer with anxiety and not knowing what the future holds. Medical appointments ruled life for so long, I spent so much time in the hospital. Life is a little easier now we have less appointments. But as a family it has made us closer and stronger.”