Thursday, April 10, 2014

Update so far this week

Well since last week Gavin has been getting on very well. His blood levels which usually drop from the chemotherapy have stayed up. He has been eating well also which is great. We know he needs to keep us his strength for the fight ahead..

The only side effect seems to be his sleeping or lack of. He becomes very restless at night-time. He is tired but keeps waking and a bit uncomfortable. He starts off in his own bed but at some stage will ends up with myself and Jayne which is fine. To be honest I can't sleep without him beside me now anyway (even if he kicks me all night long and wakes me for a drink or a bottle..)

So other news. Well we sent Gavin's sample last Friday to Foundation One in the US. I spoke with the team over there and the head researcher from Crumlin who has been a great help and fully supports what we are trying to do.

Unfortunately we received news last night that the sample was too small for them to conduct their testing...We knew that this might happen but hoped we had enough. On review of some articles about Genomic testing the below confirmed that using a sample from Gavin's first tumor wouldn't give us the desired results for what we are facing now.

(As more targeted agents become available, biopsy of the recurrent tumor may become an important intervention for selection of therapy since the mutations present at recurrence may differ from those present at initial diagnosis)

I had a conference call today with another oncologist in a hospital in NY. She was very helpful and gave me some good advise and also reviewed Gavin's file.

We are waiting for 2 other US hospitals to come back to us who we will have to paid to review Gavin's medical files and scans so we hope to have something next week.

We start back in Crumlin next Monday for the 2nd round of chemotherapy.

Other news we had a great surprise for Gavin on Tuesday. Jimmy Norman the founder of Aoibheann's Pink Tie who have always been a great support to us and all the families from St. Johns Ward asked if Gavin would like a mural on his bedroom wall. We didn't realise how amazing or what this was going to be like.
Well judge for yourselves but I think you can see from the smile on Gavin's face how much he and we all love it.
So big thanks to Jimmy and Conor and Cathal from Vinyl Murals (