Posted on Tuesday 24 September 2019
Imogen’s Story – “Cancer changes your whole life. Once you get that diagnosis it is your every thought.”
When Imogen Towers was diagnosed with a brain tumour, her family faced a three-hour round trip for life-saving surgery. Here, the family share their story and the impact of cancer costs for Childhood Cancer Awareness Month.
Parents Emma and Kirk Towers were devastated when their daughter Imogen, six-months-old at the time, was diagnosed with a brain tumour. Now six-years-old, Imogen has seen the tumour return three times and is severely disabled as a result of life-saving surgery.
Emma said: “We first noticed something wasn’t right when Imogen was three-months-old, so we took her to the doctors. We had concerns about things that were all wiped under the carpet, and I kept being told Imogen was just being a baby. We couldn’t get anyone to believe us. I was just watching my daughter die in front of me.”
After months of visits to the hospital, Imogen had an MRI scan which revealed she had a slow growing astrocytoma – a type of brain tumour. The tumour was a third of the size of her brain. Imogen was taken to hospital in Bristol and straight into surgery.
“They couldn’t have waited any longer – she would have died. The impact on your life once you find out your child has cancer is devastating. Everything in that moment and operation changed for us.”
After coming out of the operation, Imogen started chemotherapy at Bristol, where the family faced a five-month stay, and a 120-mile and three-hour round trip. Following that Imogen was able to have the rest of her treatment in Taunton, closer to the family home.
“From having her operation to remove the tumour, Imogen ended up having a massive stroke and blood loss. She has cerebral palsy, right sided weakness and she has third nerve palsy so her eyelid is closed. She can’t speak and needs help to do everyday things.
“Cancer changes your whole life. Once you get that diagnosis it is your every thought, and future what you think about.”
During the difficult time, the family were supported by CLIC Sargent, the UK’s leading charity for children and young people with cancer. The charity provided a Home from Home in Bristol for the Towers’ family to stay near to Imogen.
“CLIC Sargent was there for us and CLIC House for a place to stay close to the hospital. It helped so much.
“Linda our CLIC Sargent support worker has been there from the very beginning too. It would have been massively harder without CLIC Sargent.”
This Childhood Cancer Awareness Month, CLIC Sargent is raising awareness of the impact on travel costs for families. Families face an average round-trip of 60 miles to get to and from hospital for treatment, spending at least £180 a month on travel when treatment is at its most intense.
Emma said: “Having a child on treatment is really expensive. The cost of the petrol – and eating in hospital. We were eating takeaways and ready meals constantly and we have spent thousands on car park tickets over the years.”
Last year, CLIC Sargent research revealed that young cancer patients travel twice as far and costing twice as much as adults for treatment. As well as getting to and from hospital, families’ face other added costs when a child is diagnosed with cancer, spending an average of £600 a month extra, on top of everyday expenses and bills.
Cancer changes your whole life. Once you get that diagnosis it is your every thought, and future what you think about.”
Since her initial diagnosis, Imogen has relapsed three times and had three operations to de-bulk her tumour. In May this year, Imogen had another MRI which showed the tumour was growing again and she would need another operation to remove it. The tumour was reclassified as a low grade pilomyxoid astrocytoma.
“The relapses have been hard. Watching your daughter go through everything once was horrendous, and now having to watch her go through it all again and again is really tough.
“Although we were told she would be severely disabled and likely not to be able do anything after the damaged caused from her first operation, Imogen can sit up on her own and smiles at everything, she eats food on her own and stands with assistance, and tries to walk with a walker and attends a brilliant specialist school. She will lick her lips at dinner time.
“She has done so much more than she should have ever done. She is non-verbal but she communicates with us and can tell us what she wants in her own way. She is an amazing little girl who smiles through everything, loves music, Disney DVD’s and family days out.”
Donate this Childhood Cancer Awareness Month and help more families with the immediate costs of cancer.