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10 children and young people are still being diagnosed every day in the UK.
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Barney was diagnosed with mucoepidermoid carcinoma, a rare lung cancer, on 22 July 2024 when he was eight years old. His mum, Phoebe, tells their story so far:
Support children like Barney so that they have a future they deserve.
In September 2022 Barney picked up the usual back-to-school cold as he does every year. He always picks up colds and we never thought anything of it but noticed as time went on some nights he would have this dry cough that wouldn’t stop.
We saw the doctor and he was given an inhaler and told that it sounded like it was viral asthma. We tried a few different inhalers but the wheeze never really went. In October 2023 he was diagnosed with asthma. It was around this time I noticed he was being really fussy with his food when he never normally was and was losing a bit of weight. I thought he was just going through a fussy stage as some kids do.
I thought he was just going through a fussy stage as some kids do.
However, in February 2024, Barney woke up with a fever and was being sick. The sickness stopped and he developed a cough along with the fever. I noticed his weight had dropped in a couple of days and we took him to the doctor where an ambulance was called and he was taken to A&E where he had a chest x-ray. His whole left lung was white with infection and had collapsed. He spent the next seven days in hospital with pneumonia.
At his eight week follow-up appointment following the pneumonia they took another x-ray which showed his upper left lung was still collapsed and he was referred for a CT scan. This then showed a blockage in the lung that was thought to be a mucus block from the pneumonia. An urgent CT scan with contrast and we received a call the day after the scan to tell us it was a tumour and he would need to come in the next day for a biopsy. It was completely out of the blue and hit me like a train. I couldn’t believe what I was hearing. Barney is an extremely anxious child and I didn’t know how I was going to explain to him he was going to have a procedure.
I didn't know how I was going to explain to him he was going to have a procedure.
The results from the biopsy would take two weeks but they came back inconclusive. I remember calling every week to see if there was any news until 6 weeks later we received the news that it was cancer and he had a mucoepidermoid carcinoma in his left lung. Chemotherapy wouldn’t work and the best option would be surgery. Due to the location of the tumour the safest way to make sure they got it all was to remove his left lung. It was an extremely rare situation and the adult thoracic team would be involved in the surgery.
A week later Barney went in for surgery to remove his left lung. Thanks to all the amazing surgeons involved the procedure was a success and Barney recovered amazingly in hospital and came home just five days later. The past few months since surgery Barney has continued to have a PET scans and MRIs which have fortunately come back clear. He is gradually recovering with his remaining lung but it is taking time. We take each day as it comes.
Everything seem to happen so quickly you never had any time to process what was really happening and the impact it was having. We just put our heads down and got through the next part of the journey. In hospital everyone was always so amazing but as soon as we got home it felt so lonely. There was no one to talk to who really understood what we were going through. We have been surround by are amazing family throughout but it is hard to explain how you are really feeling.
Phoebe, Barney’s Mum, February 2025
If you’ve been touched by Barney’s journey, help us invest in the high quality research that really matters which would otherwise go unfunded.
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