Thursday, April 3, 2014

Update this week

All is good thank god so far this week. Gavin is in great form and has been very active which is brilliant. As below pictures show he also looks amazing.
We have been very busy this week contacting and collecting information form all different sources and compiling a list of specialists and hospitals to contact to get a 2nd opinion on Gavin's files.
We have had amazing support from people all over the world who have contacted us with names of people they know in different centres that may be able to help or know someone else who can so thank you everyone for your help and support.
I have also have been in contact with Focusoonrhabdoand another group called "Liddy Shriver Sarcoma Initiative" . Both groups have been amazing and have given me some direct contacts with Rhabdo oncologists. We also have had great contact from St. Baldricks in the US too which is amazing.
On Monday I met with the Consultant Paediatric Pathologist in Crumlin to discuss getting a sample of Gavin's tumor so I can get it tested.
One of the recommendations we have been given from another specialist is that we should get Gavin's biopsy sample tested for "Targeted Therapy". There is a company in the US who specialise in this testing procedure.
What they do is take a sample and test it in their labs and see what chemotherapy agents attack the cancer cells. This test is more specific for each different person and tailors treatment. We are unsure yet if we have enough sample from the last biopsy but we are going to send it to them anyway and hopefully they will be able to use it and give us a report of what agents work.
So tomorrow morning I have to go into Crumlin and send off the sample.
Link below is a video on what they do:
So for now Gavin is well and in great form, we will monitor him now over the coming days and test his blood to see what his levels are like and continue to speak with as many oncologist's worldwide who specialise in Rhabdo to get their views.


Our Beautiful little Hero
SuperGavin - Man of Steel

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