Friday, May 16, 2014

More bad news…One of these days we will post something good….

Well Gavin's MRI scan last Friday showed that the tumor has grown and now also a new lesion on his bladder. So 2 cycles of temozolomide and temsirolimus did nothing. 
After the scan last Friday I asked for a copy of the images on disk so I could send to the US Hospitals. When I got home I looked at the disk and report myself. To say we felt sick was an understatement. 

We didn't want to tell anyone what we had just read until we spoke with the consultant in Dublin. 

Our consultant rang on Tuesday morning and asked if we could come in and meet with him to discuss the results. I went in to meet with him on my own, as Jayne stayed at home with Gavin - it's too difficult to take stuff in when Gav is running around the room. We already knew…

He basically told me that he thinks there is nothing more they can do for Gavin. The tumor hasn't responded to the new chemo drugs and now had spread. I asked him what else we could try and he said, "I don't think there is anything left, you should enjoy your time together" to which I asked how long and he said "a few months".
Even still writing this it still doesn’t seem real the conversation I had. Anyone that has seen Gavin recently would know how well and strong he looks and is…He is very active and healthy but apart from that this bastards inside still grows.
So I asked the consultant about the possibility of surgery now the tumor had grown and he said, "nobody would be able to operate on Gavin". He told me to go home and relay this information to Jayne and then call him back during the week.
I sat in the car park in Crumlin for about 20mins before I could drive home. None of this seemed real…

I got home and was greeted by Gavin running down the hall to me with a big hug. I just switched off from what I just heard and tried to act as everything was normal. Conor and Lucy were home too so it was hard to try and speak with Jayne, but I did. I told her what he said and she cried, but we both agreed that’s just his opinion and not the final words..

Now our thoughts were we need to try something rather than doing nothing at all…so that afternoon we played with the kids as normal. As soon as they went to bed I started working on who and what I needed to do and contact ASAP.. 
We updated Sloane Kettering and Mount Senai in New York on the latest scans. They will be back to us next week.
Our consultant in Dublin said that since Gavin already had proton therapy and also brachytherapy that surgery without follow up radiotherapy to kill any microscopic cells would be of no benefit to Gavin. 
Well we don't think so….why would you leave something growing if it could be taken out...

We also have been in touch with Royal Marsden in London and some private clinic that have used a special radio surgery (Cyberknife) to treat other in operable tumors with success for their input.

I also spoke with another Rhabdo specialist in the US and showed him all Gavin’s history and he asked if the last tumor biopsy had been tested for ALK gene. I didn't even know what that was. After some more research and asking the lab in Dublin has this test been done and they said no...
"If ALK is positive, would be worth trying "crizotinib" since there is a trial by Novartis that allows treatment of patients of rhabdomyosarcoma who have ALK IHC positivity to be treated with the ALK inhibitor". (In English this means that there is a new drug available for children that have this gene mutation)

So that has given us some options, which we currently didn't have. We spoke with the research team in Dublin and they will test for this next week.
Then we asked about trial drugs so we are going to try Gavin on a course of "Pazopanib" to see if that will stop the tumor growth starting next Friday.

We are banging on doors now from all corners of the globe to get more people looking at Gavin's file to give us better options.

Sorry for the long post. Never Giving Up..

Gavin delighted with himself having some banana ice-cream in the car..

The 3 amigos playing in JungleMania this week.


  1. Never give up hope, we never know what doors open around the corner to us

  2. You let us know anything we can do here state side. Keeping you all in my prayers

  3. You are amazing fighters, your tireless research will stand to you, you will win this, like so many others all my love and thoughts are with you at this insanely difficult time xxxxxxxx

  4. Love and prayers to you all. xxx

  5. Thinking of you and your family. Xxx

  6. I got so sad when I read your story, but also so full of admiration for your strength & love for this little boy!! I am recovering from surgery to remove cancer, & find every cancer story has become so personal!! All the very best, little Gavin & ur family are in my prayers!!

  7. Wishing you the best of luck. I hope you find a way to help your boy. Cnt imagine how you are feeling. X

  8. Please God something will turn up - thinking and praying for you all xx

  9. Man you're an inspiration! Gone are the days when we take one mans opinion as gospel... keep going!! Love from a very old Jayne friend... ruth xx