Caleb’s Story

Firstly, I would like to thank you for the most incredible break at Ben’s Infinity Lodge. The children had the time of their lives; we could not get them out the pool at 6pm each day!.

The 11th July 2024 will be forever etched in my memory and our lives have not been the same since. Our son, Caleb then aged 7 years old came home from school feeling unwell. I gave him a shower and put him to bed, thankfully myself and my husband continued to check on Caleb for the next couple of hours. I went upstairs and found Caleb having a seizure and vomiting. We called 999 and as we only live a few minutes of the nearest hospital the paramedics arrived within minutes. When the paramedics arrived, they examined Caleb and he had paralysis on his left hand side.

Later in hospital medical staff told us that they had found something on Caleb’s brain. Caleb had a bleed as a small baby, so at this point I was not overly concerned as I thought they had found scaring from the original bleed.

Two days later we were told that they had found a brain tumour on the right hand side of Caleb’s brain and we were transported to Royal Manchester Children’s Hospital. Caleb remained in hospital for two week whilst they did further test and performed a biopsy.

Once we where discharged we spent everyday waiting for the phone call to tell us what would happen next, this was an agonising time for myself and Caleb’s Dad, the uncertainty of what would happen next was very difficult to deal with, as we tried our best to keep family life as normal as possible for both Caleb and his sister.

In September we got the next that Caleb had a rare inoperable brain tumour a pxa (pleomorphic xanthoastrocytoma) but did have other characteristics that did not fit with a pxa tumour. The medical team agreed that Caleb’s tumour would not respond to chemotherapy and therefore he is on a new treatment.

Fortunately, his tumour has remained stable and he has now been on the medication for nearly 2 years. However, we do not know what the future holds and living on a daily basis with the uncertainty can at times be extremely stressful. This may sound strange but it is also difficult because outwardly Caleb looks like a typical 9 year old boy but he struggles with his behaviours and regulating his emotions and can be quite repetitive and rigid in his thinking.

He is a remarkable little boy, who looks on the positive and is extremely reliant. One of the hardest things Caleb has ever asked me is “mummy are you worried I’m going to die” how do you answer that as a parent. Despite the stresses and strains we are extremely thankful of everyday we get to be family, especially when we know other family are not on that position.

Thank you to everyone at BSF for such a lovely break away