When my beautiful twins, Destiny Mai and Liberty Rose were about 6 weeks old, we noticed that Liberty was different, her eyes would roll into the back of her head and move rapidly from side to side and with age got dramatically worse (which was later diagnosed as Nystagmus), she also suffered from severe vomiting.
We took Liberty to the GP Surgery and the GP said she is OK, she’s healthy and to come back if we were concerned. We were concerned and continued to fight for our daughter, but GPs, Health Visitors and even Consultants seemed to fail us.
Eventually after much pushing we got an MRI scan, 6 months after our first visit to the GP Surgery.
Then came the devastating news, Liberty had a tumour wrapped around both of her optical nerves, this was called an Optic Chiasm Glioma. We were heartbroken.
Liberty had brain surgery at the age of 9 months and within weeks of this surgery she began a very long & grueling 18 months of chemotherapy.
Liberty completed her course of chemotherapy and was left with around 20-30% of the tumour remaining, we were happy with that as we were told that her tumour would never go completely.
Liberty had a further scan 9 months after finishing treatment and to our shock, Liberty’s tumour had “vanished”, although our Consultant stated she still has cancer cells there, to both me and my husband, Carl, the scan was clear and we are over the moon and our little angel has given so much hope to others.
Carl and I want to be involved with Be Child Cancer Aware, as had GPs been made more aware of signs & symptoms Liberty could have been treated so much earlier. Six months for a diagnosis is shocking and other children do not have this amount of time in their favour.
