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..
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| Gavin delighted with himself having some banana ice-cream in the car.. |
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| The 3 amigos playing in JungleMania this week. |
