Today we’d like to share with you the story of Ted Thomas – or ‘SuperTed’ as he’s affectionately known by many – and his family, comprising dad Andrew, mum Amanda, and big sister Elsie, from Driffield, East Yorkshire.
Ted was born in April 2020 to a doting family, and despite some initial difficulty breathing and some time spent in the intensive care unit, Ted came into his own, meeting new milestones and developing as any parent would expect. However, come late November, one night Andrew and Amanda would sense that something wasn’t quite right with Ted, who felt clammy and had a bloated tummy. After calling 111, Amanda took Ted to Scarborough hospital, where some checks and an x-ray were done. Not long after, Andrew would receive a call at home to say he should make every effort to get to the hospital, as Ted would need to be transferred to the Leeds General Infirmary as a matter of urgency.
Andrew said, ‘During the afternoon of Friday 4th December, Ted was formally diagnosed with neuroblastoma. Our consultant, Danielle, sat us down to tell us the full diagnosis and treatment plan. Ted had a tumour in his abdomen, probably adjoining his kidney or adrenal gland, that had grown to a size of 14x11x9 cm. On the scan, his kidney was squashed against his skin, with the mass taking over more than one side of his little body. It was truly a sickening sight, and goodness knows how he had allowed it to be there without giving us any clue of discomfort or irritation. Ted would be given a course of treatment that would begin with four cycles of chemotherapy, with three days on the treatment for three hours at a time, and the remainder of the cycle would be recovery time. Ted would need to be in hospital as an inpatient for each period of treatment, and would have a scan at the halfway point, to check progress and effectiveness.
Joining a ‘top 100 club’ is so often a positive experience, but as you begin to let the truth of this despicable news sink in and realise that neuroblastoma ‘only affects 100 children in the UK each year’, you instantly recognise and feel the pain of all those other ‘lucky parents’ who have had to endure this moment, and the tens of thousands who have learned news of other afflictions with a similar magnitude and varying, equally horrific, potential outcomes for their children.’
Just the day before Ted was taken into hospital, Andrew, who was taking part in Movember at the time, had spoken at a school about the likelihood we all face of being touched by cancer at some point – but never dreamed of what would happen just the following day. By January 2021, at just under nine months old, Ted had already received two rounds of chemotherapy and by March, another two, totalling four, with an operation to remove the tumour following in April.
Andrew continues, ‘We went from watching a game of rugby to 24 hours later being in Leeds, 50 odd miles away, and from having two healthy, happy babies to one of them fighting for his life. We didn’t see this coming.’
Surgeons were able to remove a large amount of Ted’s tumour with some residual tumour left which will be monitored. Last week he was able to have his Hickman line removed, and he continues to improve: crawling for the first time this week. Andrew adds, ‘These are precious days that at one point, our hope wavered as to whether we would ever see.’
Incredibly, whilst experiencing this whirlwind, Andrew decided to fundraise for Candlelighters, rallying friends and family to set up ‘Super Ted’s Miles’. In September, the team will be taking on the Leeds Half Marathon, and in the meantime, they’ve been training intensely – completing a ‘virtual’ half marathon last month.
Andrew said, ‘God forbid it should ever happen to you, but if it does, we certainly pray that the Candlelighters staff are there to meet you and help keep the light burning for whatever the duration of your collective ‘stay’. After all, this is not just about Ted. Any child of a close family member, friend, or work colleague could stumble unwittingly into this disease, and they will undoubtedly rely on the skill, love and care of this fabulous charity. It is safe to say; we would not have coped as well as we hopefully are doing without them.
Amanda and I have also stayed at The Cottage; a simply breathtaking place for those struggling with the enormity of their situation who are also burdened with a lack of transport and/or long journey home. We were blown away by the set up and the ease of being able to live in a ‘home from home’. The work Candlelighters do is so important.’
So far, Andrew and the rest of the ‘Super Ted’s Miles’ team have raised over a staggering £27,000 for Candlelighters, for which we are so grateful. This amount will make an amazing difference to lots of children and families and could fund all of our children’s talking therapies and sibling groups for a whole year.