Charlotte's Story | Childhood Cancer Awareness Month

Charlotte’s Story

15-year-old Charlotte from Richhilll in Armagh was diagnosed with Metastatic Medulloblastoma with metastatic deposits on the spinal cord in April 2022. Her family are sharing their story this Childhood Cancer Awareness Month to raise awareness of the impact of a childhood cancer diagnosis.

Charlotte

It started as headaches, sickness, dizziness and I 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 2-3 days and I could barely eat anything and the pain in my head was unbearable.

When I got 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.

Before radiotherapy I had to have a mask made to wear for the treatment. I had to lie on my stomach for 3 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 my journey was 4 high dose chemotherapy treatments, each session lasted about 23 days in an isolation room.

My saving grace was Lucy, the light of my life

I was her first patient when she started as a Cancer Support Specialist 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.

When I got 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.

I still have to go through 3 monthly MRIs and I feel very tense until the results come back because you just don’t know. Things can change as fast as anything.

Charlotte’s Parents

We had taken Charlotte to the GP on numerous occasions and they couldn’t figure out what was happening.

Then at one eye test the optician noticed a lot of pressure behind her eyes and so she got referred to the Royal Belfast Hospital for Sick Children. We thought she would just be given some steroids and then be sent home but they asked us to stay overnight. That was on the 11^th April and we ended up staying until December.

Charlotte got an MRI on the 12^th and then had surgery on the 13^th. Everything moved very quickly after that and nobody could have prepared us for the way the next months unfolded. Initially Charlotte couldn’t open her eyes and was very agitated. After returning from ICU to the ward Charlotte couldn’t settle and her speech was very repetitive as if her brain was trying to reboot. A wheelchair gave her the freedom to go off the ward as she had to learn to walk again.

After that we had to wait for Charlotte’s biopsy results and when they came through we were brought into a room and told it was a group 4, subtype 6 cancer. This didn’t mean anything to us at the time.

We used to come out of these rooms and look at each other and think “what have we just been told”

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 traumatizing 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.

We got out of hospital at the end of December, but cancer doesn’t stop.

Everyone thinks that once treatment is finished, you’ll just go back to your life but the nightmare still goes on

People think Charlotte is better but the doctor said there’s a reason you only get 4 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. Charlotte lost 80% of her vision in her right eye and 50% in her left and that’s something she’s never going to get back. It just seems so cruel.

After living in the hospital for such a long time, getting back family life is hard. Our children had to get used to us being back at home and we had to get used to being at home. That was difficult as everyone had to find their place again.

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 so much difference.