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As lots of you are aware our little Livvy was diagnosed with an inoperable brain tumour on 29th March 2013. She has undergone 2 brain surgery operations, had a shunt fitted into her brain to drain fluid into her tummy and now has a port which she has chemo administered through. Livvy had 18 months of tough chemo, lost every strand of hair on her body, lost most of her body weight which meant she needed to be fed via a feeding tube, had endless nights of continuous sickness, countless blood and platelet transfusions which thankfully led to a huge reduction in tumour size. In December 2014 Livvy finished chemo and we were thrilled. However this was short lived as by June 2015 the tumour had regrown, was causing right sided weakness and was pushing on her brainstem, it now looked like the tumour had turned malignant! Livvy had more brain surgery to do a biopsy to determine exactly the type of tumour Livvy had. A week later we found out, thankfully, it was a stubborn, benign tumour. Livvy started her second protocol of chemo. Three months later her tumour was still growing, right sided weakness getting worse and now virtually no sight in her left eye. We were faced with the decision to change chemo again, this time to stronger chemo which has side effects of possible internal bleeding (bleeding in the brain!!), bowel problems, sickness, loss of hair etc etc!!  We didn't really have a choice as we didn't want Livvy to go blind, so in November 2015 Livvy started her third chemo protocol. She did suffer tiredness and sickness but thankfully someone was looking over her and the stubborn tumour had dramatically reduced in size and her vision restored ! The tumour was being starved of blood and therefore unable to grow.

After nearly a year of this protocol the tumour had started to grow again. This time consultants felt chemotherapy wasnt working for Livvy. We just wanted a break to try to regain a bit of normality but it was not possible. 

We were put on under the care of the research team at gosh as it was considered Livvy could be a candidate for new inhibitor meds as part of a trial. It was scary signing a form to say your child may die from taking these meds but there wasn’t really any choice. 

Olivia is now currently taking part in the MEK trial and is the first child in the UK to be treated with the dabrafenib and trametinib inhibitors together, which targets Livvys exact mutation that causes the tumour to grow. This trial, if successful, could mean children like Olivia never need to have chemotherapy. We are so thankful to all the research carried out into brain tumours. Without this Livvy would have no option but to have radiotherapy with lots of harsh long term effects or go blind with very reduced mobility. 

Gosh have given Olivia such a great quality of life and are truly the most amazing hospital. We want to raise £10000 to put towards a state of the art imri scanner which will allow children to be scanned during operations and will cut down on the number of anaesthetics children will need to be given. Olivia’s brain surgeon is the man behind this fundraising and he feels it would considerable benefit children like Olivia from having repeat anaesthetics for mri scans after operations. 

Please give whatever you can, every £1 counts.

Thank you xxxx

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