A devastated mum has relived how her son underwent ‘barbaric’ treatment for a brain tumour, then died aged just 17. Nikki Treharne, 53, said her family were left utterly broken by Ethan’s illness and death. She now campaigns for greater awareness and improved treatment for the condition, which is the leading cause of cancer deaths in children and adults under 40.
There had been no hint of anything wrong until Ethan came back from a Duke of Edinburgh weekend with a headache when he was 15. Nikki and her husband Justin assumed their son was tired and dehydrated from sleeping outdoors and trekking. But two days later his condition deteriorated. “Like many people I’m sure would say, we were just a regular family of five,” Nikki, says. “We were definitely blessed to have such happy and healthy children up until this point.
“Ethan had barely suffered a cold. Life was busy with numerous sporting commitments. He played academy basketball and football and was so active. He had no symptoms at all until one Monday he complained of a headache. I was at work two days later on the Wednesday when my husband called me to say not to worry but Ethan had messaged him from to school to say ‘Dad I need a doctor’s appointment, I can’t find my words and my face has dropped’.
“The GP sent him straight to A&E for a scan which happened at 3.30pm on the Thursday. By 5.30pm we were back in hospital after they discovered a mass in his right frontal lobe and they were preparing to blue light him by ambulance to Southampton for emergency surgery.”
Ethan was diagnosed with a glioblastoma tumour, which is a very aggressive form of cancer. The family was devastated but there was worse news to come. Two weeks after surgery doctors told the family that the tumour was grade 4 and incurable. “We were blindly just going along with family life totally unaware that this deadly killer was lurking in his head,” Nikki says.
“To say we were shell-shocked and this was out of the blue is an understatement. We just went into full unaccepting mode. We continued to fight and have hope until the end, as Ethan did, our inspiration. He was 15 when he was diagnosed, just two months into his final year of secondary school.”
Treatment was gruelling; Ethan underwent three craniotomies and was conscious for the final surgery. He also had many other treatments including chemotherapy, radiotherapy and courses of steroids which left him feeling terrible. “I think it helped that he was so fit and bounced back well and was so brave,” his mum says. “The standard of care, chemotherapy and radiotherapy that followed though was barbaric and exhausting.
“It’s so outdated, does more harm than good and didn’t offer any chance of a cure but what option did we have? Radiotherapy left Ethan with daily seizures. This robbed him of his freedom when he was at his best along with hair loss and sickness.
“I think one of the worst drugs are steroids. They have to take them to relieve the swelling and symptoms but they come with so many bad side effects such as weight gain, mood swings, thin stretched skin and a moon face that you hardly recognise the person they were.
“Ethan endured further chemos and immunotherapies, repurposed medication and alternative treatments. We travelled to Germany to access this as many were not available due to Ethan being under 18.”
Ethan devastatingly died aged just 17, leaving Nikki and her family feeling utterly broken. She helped to form a group called The Angel Mums, a support group for those who have lost a child to a brain tumour. Families also fundraise with the aim of transforming brain cancer treatment and care in the UK.
“No parent will ever get over the loss of a child – it’s unfathomable,” Nikki says. “I often think when people say to me ‘I don’t know how you do it, I wouldn’t survive’, that I really don’t have a choice. I also have two other children that need me. You don’t survive either – the person I was before is gone. I am forever changed as Ethan is forever 17. We are now just trying to navigate this new existence without Ethan and doing our best to honour and remember him with our fundraising and helping others as he would have wished.
“It gives us purpose and keeps us busy and distracted from the pain. I was one of the eight original mums who formed The Angel Mums. A lot of us had met along our journey of fighting for our children’s lives, so we knew each other from Facebook groups where we discussed treatment options.
“The Angels Mums group give each other so much support. No one can understand the loss of a child unless you have lost one. We remember all the things other people don’t that affect us, support each other on important dates and rant to each other about things others wouldn’t get.
“We also feel like we can laugh together without judgement and just be ourselves and cry together when we need to, as we’re often putting on a front and a brave face.”
As well as raising funds for this vital cause, Nikki also wants to raise awareness of the prevalence of brain tumours. “I wish people knew that brain tumours are the biggest killer of children and the under 40s, yet they receive the lowest allocation of funding,” she explains.
“This needs to change as treatment has not changed in over 30 years. The treatment is old, barbaric and has only has a 7% chance of doing anything. So much advancement has been made with other cancers: all of them are a devastating diagnosis but other cancers like breast and blood cancer have options and hope from the advancements they have made through research.
“We should be given the chance to save frozen tissue as standard during surgery as this is what is needed for immunotherapy. I hope all we are doing is going to change the treatment options for those who will face this diagnosis and how it is delivered. I want that hope for others as we never had any.”
Nikki and the other Angel Mums are fundraising for the Tessa Jowell Foundation on JustGiving: https://www.justgiving.com/page/angelmums2024