Brandon from Cottingham had never needed to be in hospital, until early 2022. What was a suspected viral infection turned out to be acute myeloid leukaemia (AML). Brandon’s mum Samantha tells us their story.

Samantha – “We’re a family of five – myself, my husband Chris, Brandon, Elliot and our dog Ringo. We’ve all always been in good health, until early 2022, when Brandon got a cold that he just couldn’t shake. He lost his appetite, was sleepy, and kept getting bouts of diarrhoea. After a few trips to the doctors and a rash appearing on his chest, we were sent to Hull Royal Infirmary where bloods were taken and I was told Brandon almost certainly had leukaemia.

Brandon and I were taken to Leeds hospital and Chris met us there. A few days later, Brandon was officially diagnosed with high-risk acute myeloid leukaemia.”

This was the stuff of nightmares. Chris, Brandon, and I missed Elliot’s 4th birthday. Elliot went to bed the night before his birthday with Brandon and I missing and woke up on his birthday with Daddy gone and his Grandma home instead.

Both Chris and I were signed off work. I stayed in hospital the whole time with Brandon; Chris would visit us every day, driving from our home in Cottingham, over 60 miles away. Often he would have to park in a multistorey car park and pay for parking on top of fuel. Chris went home every day to be there for Elliot, to try and keep things as normal as possible for him. I only saw Elliot during FaceTime calls; I needed to stay at the hospital for Brandon. We were very grateful for the new patient grant from Candlelighters shortly after diagnosis. Around July, we started getting Disability Living Allowance as well as another couple of grants. They all helped with travel costs for Chris.

Due to the nature of Brandon’s diagnosis, everything happened very quickly. There was no time to process anything, we were just given information and watched things unfold. We were in hospital for five weeks for Brandon’s first round of chemo then after five nights at home he was back in for a second round. During this time he picked up an infection and ended up in intensive care for three weeks. When he left intensive care after being sedated and immobile for so long, he had to learn to walk again.

Candlelighters introduced themselves shortly after we first arrived in Leeds. We got a tote bag of goodies and information and then a daily visit from one or more friendly face. The Candlelighters’ visits soon became a highlight for Brandon. He loved playing with Family Support Worker Ryan and it gave Chris and I a little respite.

We’ve also been on a Candlelighters-funded holiday to Centre Parcs when Brandon was well enough, which felt amazingly normal! And I’ve also had some Talking Therapy sessions.

As a family, we’ve raised money for Candlelighters and will continue to. The charity is worth its weight in gold. Candlelighters played a big part in our journey. Without them, it would have been pretty unbearable.

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