One afternoon, Caleb’s mum and dad noticed that he wasn’t himself at playgroup, and later that week he started vomiting and complaining of a headache. She took him to A&E where they were given the devastating news that Caleb had a mass on his brain, and it was bleeding. He would need surgery straight away. After 8 hours of surgery, a biopsy and a 10 day wait, Caleb’s parents were once again given devastating news. Caleb had a rare and aggressive brain tumour known as ATRT.
ATRT stands for Atypical Teratoid Rhabdoid Tumour. It is a rare and fast-growing cancerous tumour of the brain and spinal cord. Each year less than 60 children worldwide are diagnosed with ATRT and the survival rate is less than 50%.
Our lives were shattered with those four words “Your child has cancer”. I remember looking at Caleb, my little curly haired baby boy and thinking “How can this possibly be real?”
Caleb started 12 rounds of chemotherapy and the family spent most of their time in hospital. The chemo meant that Caleb’s immune system became compromised, and to protect him Poppy and Alyssia couldn’t attend their playgroup. The whole family’s lives changed.
After the first few chemotherapy sessions, Caleb needed Proton Beam therapy too but this could only be given in America.
With my husband self-employed and the two of us split between the hospital and looking after Poppy and Alyssia, there was no income coming in. How could we go to America and still pay our bills at home? It was overwhelming, but we knew we would go to the ends of the earth to give Caleb the best possible chance.
In April 2019, the family travelled to America where Caleb spent six weeks in a Proton Centre being put under general anaesthetic five days each week, in addition to continuing his chemotherapy sessions. After eight weeks they were told they could fly home and Caleb could continue his treatment in the UK.
Being away for so long with no income really took its toll, and Caleb still had another five months of treatment ahead! The family had to rely on charities and donations from fundraisers organised by friends and family to survive.
In December 2019, Caleb’s treatment came to an end and his scans were clear! His family had the best Christmas ever and started to plan their future again.
Just a few months later, the country was put into lockdown as the COVID-19 pandemic swept the country and Caleb’s family had to shield due to him being only a few months post-treatment. This meant that, once again, they had the worry of no income while they were still trying to recover financially from the previous year.
In May 2020, Caleb’s behaviour started to change again. He wouldn’t stop eating, was sleeping a lot more and could be a little aggressive. He had a scan and his parents were called into the hospital.
Caleb could have surgery, but there were no drugs available that would be able to help him. His parents refused to give up and started researching trial drugs. Eventually another parent came forward to say that their child was on a trial drug in Manchester and suggested that they look into it.
Caleb had already started deteriorating and had been admitted to hospital. He was placed on steroids to slow the growth of the tumour. It could double in size within weeks and lead to haemorrhaging, so time was not on his side.
Thankfully, Caleb was accepted for the trial drug which meant that he could have the surgery to remove the tumour. There were many risks but the alternative was just too terrible to think about. The surgery went very well and all of the visible tumour was removed! Caleb underwent six weeks of radiotherapy before starting his trial drug in October.
There are a lot of side effects and Caleb is being tube fed, but so far his scans are looking good. He will be on this trial drug for up to two years, and it could stop working at any time, so Caleb’s treatment is still considered palliative.
How You Can Help
There are lots of ways you can fundraise to help us support Caleb's family and others like them. Please visit the Get Involved section of our website or contact our friendly fundraising team on 01708 firstname.lastname@example.org. Alternatively, you can donate now by clicking here.