LIAM'S JOURNEY

Up early with the sparrows this morning as Ashleigh was very excited about it being her birthday.  When she was asked how it felt to be 6 she said it felt a bit “freaky”, but that she felt a bit bigger.  She was very spoilt and like Liam got some very special presents.  We have got swimming after school then onto McDonalds for dinner, not Burger King as she wants to get the olympic mascot toys.

We went and saw the Oncologist today and Liam had a couple of xrays.  The xrays were all clear which was a good start.  The Adult oncologist in the USA that we contacted believes that we should be hitting this cancer with both chemotherapy and radiotherapy and treating it very aggressively.  The localised radiotherapy still comes with the risk of irreversible damage to the eye, and of course there are numerous side effects associated with the chemotherapy which would be used as a precautionary measure to prevent the cancer coming back somewhere else (metastasising) .  Dr Hamilton is also still waiting for a response from a paediatric oncologist in Memphis.  The problem is that treating adults and childrens cancers are very very different, what works in an adult may not work as well or at all in children.  Once we get another opinion from Memphis we can hopefully make a final decision.  Until then we are waiting again!  I am certainly over this waiting business.  We are going to see the Optician tomorrow – they squeezed us in with the Optician having to work overtime for us (thanks Wendy!!! ) as there is some nerve damage at the back of the eye, which may be permanent, so if that is the case, then the decision of radiotherapy is made a bit easier as the damage is already done.

We are back to see the Oncologist next week, and perhaps we can finally take a step forward instead of sideways.

Becs