THE BLOG

Watching My 11-Year-Old Daughter Battle Rare Cancer Is An Inspiration To Us All

05/10/2017 17:12
Lynne Jennings

When our doctor referred Charlotte (aged 11) to Wythenshawe Hospital on 30th January 2014, we weren't unduly worried. She'd become very pale which, we assumed may be anaemia. Charlotte seemed equally unconcerned, dismissive of us when she was required to stay in hospital overnight, preferring we went home.

Charlotte's hard to argue with so we did as she asked, but at midnight we got a call from the hospital which changed our entire lives and so began every parent's worst nightmare.

Initial tests revealed that Charlotte had a rare and extremely aggressive form of cancer called Acute Myeloid Leukaemia (AML). How do you explain to a young girl who had just started high school that she had cancer, would lose her beautiful golden hair, and her life was never going to be the same? We couldn't even guarantee that she'd get better. We told her she had leukaemia and checked that she understood. Other than being very quiet, she didn't react in any way. When asked whether she was ok, she said simply, "it's there, so we've got to deal with it." And she's retained that defiant attitude every step of the way.

On Friday 31st January, Charlotte was transferred to ward 84 at Royal Manchester Children's Hospital and there remained for 18 consecutive weeks.

After her first round of chemo, the specific type of AML that Charlotte had meant that it was too hard to treat and she would be too unwell to leave hospital. Charlotte became extremely poorly and had every possible side effect. She contracted an aggressive fungal infection called mucosal mycosis which attacked her liver, got cellulitis on her face and developed an unidentified rash.

The first course of chemo failed - instead of being in remission she was showing 60% leukemic cells. In all Charlotte went through three rounds of chemotherapy, all stronger than the last and some not meant for children. Charlotte wasn't allowed off the ward so during this time she built up friendships with other children and their parents, supporting them and explaining how the younger ones would feel after certain procedures. Although she was fighting for her life she gave parents cuddles and let them cry on her shoulder. In Charlotte's mind, everyone else was worse off and she needed to make sure they were ok.

During her lengthy stay she raised £2,000 for the ward, in order to make it more homely; she wanted to get free Wi-Fi and better TVs - as she explained, we're not normal children, we could be up all night and we need to be able to watch tv and not have to pay for it or keep in touch with our friends and not have to worry about data limits.

During this time, my husband Paul and I were both self-employed and not entitled to government help, so we decided that Paul would look after Charlotte and I would work so we could pay the bills. This meant that Paul would stay Sunday to Thursday and I would stay Friday and Saturday night (obviously visiting during the week).

Her next challenge was a bone marrow transplant which meant she had to be transferred to the Bone Marrow Transplant Unit (BMTU). Despite Charlotte's incredibly positive attitude, her time in BMTU was a struggle. Due to the risk of infection, children on BMTU must remain in isolation cubicles - parents can visit but nobody else.

Charlotte remained there for eight weeks and there were times when the boredom got to her. The children on a BMTU are in pain and although the staff do their best to keep spirits up, the rooms were stark and clinical, providing no stimulation. Charlotte turned her frustrations into a desire to make a difference, with the specific wish for her fundraising efforts to create a much more child-friendly environment in the isolation cubicles.

Her determination to see this project completed has spurred her on and I don't doubt it has aided her fight against this awful disease.

Charlotte has been left disabled due to her treatment and will require surgery to replace her knees, ankles, and wrists. Her determination never ceases to amaze; in total, she'll have missed three years of school but has managed to stay in her year and will be taking her GCSE's in 2018 with her friends.

To date she's raised around £18,000 for ward 84 . She is totally selfless and has raised the funds by giving up birthday parties and presents, organising Charity nights instead. She wants to give back to make it more comfortable for other children going through the same, so she is organising a charity party for her sweet 16th in April 2018.

Charlotte is very passionate about raising awareness of childhood cancer and the lack of funding that it receives, which is why we are so pleased that she has been chosen as an ambassador for an amazing charity like Kidscan.

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