Macie's story

In her own words.

My 10-year-old brother Oliver has a rare cancer called Langerhans Cell Histiocytosis, which is where Langerhans cells (normally found on our skin) spread to other parts of the body and attack them. In Oliver’s case, when he was 2 years old, the LCH attacked his bone (eating away small holes in his skull), his gut, his liver, spleen and skin, by causing open sores under his arm pits and severe cradle cap.

I was only 6 when Oliver was first diagnosed and so can’t remember it much! Oliver had a portacath fitted and started chemotherapy at Addenbrookes Hospital in Cambridge.  During this time, I would spend weeks at a time at my Nan and Grandad's house, while mum and Oliver were in hospital. This was really difficult. I remember one summer holiday staying at a Sick Children’s Trust house at Addenbrookes so we could take Oliver for his chemotherapy drip every day for a week. We then did some fun things in the afternoons, like going to the zoo. I liked to play with Oliver in hospital and keep him entertained – I would sing to him and do dance shows!  I also liked to help wheel his chemo drip stand around the ward.

In March 2015, after a year of chemotherapy, Oliver finished his treatment. We thought that was the end of it. Unfortunately, just weeks later, the LCH took over again. This time it had spread to Oliver’s liver, spleen and the soft tissue around his eye, dangerously close to his brain. He then started stronger chemotherapy, but the week of his third birthday he suffered an allergic reaction to the drugs and had to spend a week in hospital. He was very poorly and even had to go in an ambulance! He spent his birthday in hospital, which was really sad to see.

 Tests in August 2015 revealed that the chemotherapy wasn’t working as well as it should be. However, a clinical trial became available at Great Ormond Street Hospital in London, which Oliver qualified for. He joined the trial in September 2015. I remember going on the train with mum and Oliver to GOSH whenever I could, and we often stayed over in a hotel. I found GOSH really colourful and fun. It was a much less scary place. The Disney-themed bit in the café and the Disney Reef in the main hospital were really exciting to see. Oliver's new chemotherapy had to be taken with a syringe. He didn’t want to try it at first, but would let me give it to him. Also, he had to have cream on his skin each evening and he liked me to do that with him, too.

Oliver has been on these chemotherapy drugs ever since and is doing really well.  When Covid struck we had to shield due to Oliver being classed as extremely vulnerable. This was hard as I felt very worried and anxious, but we did lots of fun things together. Recently Oliver had some play therapy to get him ready to have an MRI while he was awake. I went along, too, because I wanted to show him it was okay. I did all of the steps first so he could see it wasn’t scary.

Lately Oliver has been struggling with his mental health because of all of the things he's been through. I am also having some counselling. I think our family’s journey may have been smoother if we’d had mental health support right from the start. It would have made a huge difference to Oliver, but it would have helped me as well, particularly when he was in a bad way. I would have liked to talk to someone I could be honest with, about home, school, feelings, rather than worrying my mum. Being in hospital and seeing and hearing what Oliver was going through was very scary. I hope the team building Cambridge Children’s Hospital will think about how to help siblings with anxiety and therefore prevent more problems within families. 

Oliver has been on treatment for 8 years now. It's all the two of us really remember.  It has been tough and may be for many more years, but I will always be there for Oliver and I am so, so proud of him.

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Over the years Oliver has received 'beads of courage' to mark the milestones in his treatment, from chemotherapy to hospital stays. In this video, Macie explains why these beads are important.

Over the years Oliver has received 'beads of courage' to mark the milestones in his treatment, from chemotherapy to hospital stays. In this video, Macie explains why these beads are important.

Thank you Macie and Oliver for sharing your story.

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