Monday, April 14, 2014

Round 2 back in Crumlin today

We were back in today to start the 2nd cycle of Gavin's new treatment. This will be the last cycle before the MRI and CT reviews in May.

Gavin and Lucy in bed this Morning before we left. 

Gavin has put on a good bit of weight, he's actually the heaviest he has ever been which is great news. All the meatballs for breakfast and sausages (thanks Lynda) are really working and long may it last.

Gavin ran down the corridor today not a bother on him.
We received the new batch of chemotherapy on Saturday to bring with us.

So does this look toxic..

Gavin was great just watched some movie while getting his chemo. He wasn't sick thank god and we finished about 3pm which was great.

He is very tired this afternoon so he's just been sleeping on the couch since we got back. 

For the rest of this week we can give him his chemotherapy at home as they have made it up in a liquid format. We will just have to keep and eye on him and make sure he takes it all as none of it can be wasted and if spilt we will have to go back in to have it via IV.

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 (

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