Georgia had a lot of viral infections quite close to each other
She always seemed to have a cough or a cold. In the two months before her diagnosis, she had scarlet fever, chicken pox and lapped cheek syndrome.
I’d taken Georgia to the GP four times. She had a prominent vein on her neck and you could really see that she had a fast pulse. She was really pale, lethargic, couldn’t move, she cried when I touched her and her temperature was 42. The GP thought it was a virus related to the chicken pox but I wasn’t convinced so I took her to the out-of-hours surgery.
Within an hour and a half, she had blood tests, within two hours she was in a high dependency unit. It all happened really quickly but it saved her life.
As soon as she was diagnosed with acute lymphoblastic leukaemia, I went on autopilot – it’s really only now that I think about it all.
Georgia was part of a clinical research trial
As part of her treatment, Georgia was part of the UK ALL 2003 clinical trial. When Georgia first went into hospital and diagnosed with leukaemia, the consultants spoke to us about a clinical trial. We talked about it a lot as there was a lot to take in.
I didn’t really understand about minimal residual disease (MRD) and I was concerned about the possible side effects of the chemotherapy – would it affect her growth, what about puberty, could she have babies? But our consultant paediatrician explained it all really well with diagrams so we signed up.
She was initially put on treatment regimen A, the low-risk treatment arm. However the MRD tests came back inconclusive so she still had to have two further intensive blocks of chemotherapy. The extra block absolutely floored her and her little body just couldn’t take it – I wanted it to stop, and it did. She was taken off treatment and given a break for two weeks.
The trial was great to be involved with. If treatments are improved and reduced, then the side effects won’t be as bad, and future patients may not have to go through such harsh treatments. A new drug – Dexamethasone – is now part of the treatment protocol because of the trial.
Clinical trials and research are so important. There’s nothing worse than watching anyone go through cancer, let alone your little ones.
Taking everything in her stride
Georgia was 23 months old when she was diagnosed with cancer and spent most of her ‘toddlerhood’ living hospital life. She’s taken everything in her stride and it’s made her who she is today. I’ve never met anyone who is so high on life.
She was so tiny when she was in hospital and so good. The nurses always wanted to come and see her! She never complained about it. Nothing fazed her during her treatment. She’d even sit and play with her dollies and give them chemo!
She had a bout of nightmares last year, I’m not sure why. But we spoke about it with the doctors and they talked to her about everything, and the nightmares stopped. It may have been her adjusting to life after treatment, who knows.
Life after treatment
After treatment, she had no control over her nerve endings. She kept on dropping things and she was walking on her tip toes. Her legs were in splints for nine months but she’s fine now. She doesn’t ride a bike as well as other kids and she’s quite small and tiny compared to others, but I’ve not seen anyone so full of energy! Her physical ability is improving and she’ll get stronger as she grows up. Academically she’s as good as the rest of her class.
I always remember when we first went to hospital, our whole world turned upside down. Leukaemia treatment is so long – going to hospital every week for two years for girls and three years for boys. The other families at the hospital became like family to us and we’re still in contact with many of them today.
I still pinch myself today, years on – we’re very lucky and so humble.
Update: February 2019
Georgia is doing well, she is eight years chemotherapy free and is now in Year 7 of high school. She is living life, out with her friends going to her dancing and just being the happy girl she is. She welcomed her baby brother in November 2018 and is currently the best big sister he can ask for. Unfortunately Georgia is suffering many late effects due to the severity of these drugs she had received. Campaigning and research is essential in order to reduce that.
Pamela, Georgia’s mum, February 2019
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