Co Armagh teenager Charlotte, who was diagnosed with a brain tumour last year, encourages NI public to support Childhood Cancer Awareness Month

Outlining how her illness began, Charlotte McCune from Richhill said she had started to experience headaches, sickness, dizziness and "felt really clumsy”.

"At first, I thought it was normal but then it got really bad and I had to take time out of school every week. Sometimes I just had to stay in a dark room for two to three days and I could barely eat anything and the pain in my head was unbearable.”

Charlotte was eventually diagnosed with a brain tumour – Metastatic Medulloblastoma with metastatic deposits on the spinal cord – in April 2022.

She said: “When I was diagnosed, I felt relief that there was a cause for all the pain. After surgery it was really hard trying to process everything. I felt I had no control over myself. I was really sensitive to noise around the hospital so I was moved to my own wee room and it was like heaven. I also loved getting my wheelchair because it gave me freedom to move around and get away from the busy ward.”

Charlotte said that before radiotherapy she had to have a mask made to wear for the treatment.

"I had to lie on my stomach for three hours and have the mask moulded to my face. It was like nothing I’d ever gone through before. I couldn’t breathe and it made my dizziness so much worse. I was also really claustrophobic at the start and had to overcome this as well as the fear. This mask enclosed my head and it was screwed to the table for each of the 31 treatments.”

The next stage of Charlotte’s journey was four high dose chemotherapy treatments, each session lasted about 23 days in an isolation room.

"My saving grace was Lucy from Cancer Fund for Children. The light of my life. I was her first patient when she started as a cancer support specialist with the charity and there’s just a wee bond there. She really brightened me up. I didn’t want to do anything but still did it and then I started doing things because I wanted to. I looked forward to her visits. She gave my day a purpose.”

Charlotte added: “When I was discharged, I just felt so alone. We were so used to the routine in the hospital and felt secure and then all of a sudden, you’re out home and you just feel lost. One of the hardest things has been losing my sight and noise still annoys me. I have to use a wheelchair because of the fatigue and there’s not as much awareness around disability as there should be.”

Charlotte still has to go through MRIs every three months.

“I feel very tense until the results come back because you just don’t know. Things can change as fast as anything.”

Throughout this process, Charlotte’s parents Ernestine and Thomas had to leave their other children at home in the care of family members as they supported Charlotte through her treatment.

Ernestine said: “We were told the treatment plan and that it would be very aggressive. She also had a stem cell harvest which would be returned after each chemo to enable her recovery to be quicker. It was traumatising to watch Charlotte go through all she did.

"Our goal every day was to help Charlotte get through radiotherapy treatment. It’s also really hard because you have other family at home and you’re just very separated. Even though family members helped out it’s a massive transition for

everyone. We really just left home for months.”

Charlotte’s treatment may be over, but her diagnosis continues to have a lasting impact on her life and the life of her family. Her parents hope that by sharing their story, they can raise awareness that the impact of cancer can last beyond treatment, and the importance of a small gesture or a kind word.

“People think Charlotte is better but the doctor said there’s a reason you only get four high doses of chemo. Your body is pushed to the limit. So, after treatment there’s still a lasting impact. You’re mentally and physically drained. You’re still very worried about infections and endless appointments. You’re living from one MRI to the other. You try to be positive but this process does take its toll.

“We are very thankful to have met some amazing people along the way and that’s one of the reasons we have got through treatment. The staff in the hospital just think they are doing their job but to us they go that little bit extra and something as simple as a kind word or smile can make such difference.”

During Childhood Cancer Awareness Month this September, approximately 12 children and young people (aged 0-24) will be diagnosed with cancer across Northern Ireland.

Visit Cancer Fund for Children’s website today to find out how you can help ensure none of these children and their families have to face childhood cancer alone.

https://cancerfundforchildren.com/event/childhood-cancer-awareness-month/

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