Sunday, 25 March 2012

Easter Party and Fireman Sam!

Things have calmed down since I created the last post. That night (Thursday) at 8pm, Stephen took the call from Oscar's consultant to say that the neuroblastoma consultant in London wants to see us this week, initially to discuss the possibility of MIBG therapy there for Oscar.  I don't really want to talk about this too much yet, it has been so complex for the medical professionals trying to figure out which treatment path offers us the best hope for Oscar, and now we are trying to get our heads around it all. 

It seems high dose chemo here in Belfast isn't likely to work well on what disease is left to tackle, MIBG should be more successful.  Trying to be realistic, but just can't contemplate this not working.  Which means we will have to leave the clinical trial as we are veering off path, and the clinical trial is the only way we can get the immunotherapy drugs which give him the best outlook.  These aren't licensed for use here yet, but have proven very successful in the American trials in extending the kids lives by decades, and are now available there outside of trials.  So what does this mean for us?  We MUST get Oscar these immunotherapy drugs to extend his life as much as possible, but if we can't get them here do we need to start fundraising for treatment in America yet?  Overwhelming, and all still up in the air, hopefully Wednesday will give us some answers or at least provide us with enough information to come to our own decisions.

So we put all this to the back of our minds today - we had arranged our Easter party for the kids (egg hunts and all the rest) last week, when we still thought the likelihood was that Oscar would be going in to start high dose chemo tomorrow.  Oscar had an AMAZING time, he loved finding the eggs, and ate so much chocolate we were sure he would be sick!  We played games and had a lot of fun, with some of his aunties and uncles there too.  We even had a cake for Daddy's birthday which is this week!


Then, to top it all off, the local fire crew called to our house in the fire engine to visit Oscar!  He was blown away, and overcome with excitement.  They were great guys, accommodating his every request.  Thanks so much!  He was pretending to drive, turning the lights and siren on, wearing the hat, and using the hose!  Poor Izzie wasn't so keen though, woken up out of her sleep to join in the fun, and the siren was just too much.  Some of the local kids called down too, there was a lot of excitement about Oscar's special visitors!  And thanks also to Heather and Alan, who helped make it all happen.  It really was a highlight, and Oscar will talk about it for a long time to come.  Special memories for us too...


Oscar was absolutely wrecked by this evening, this is probably the most active day he has had in 6 months or more!  He got really cranky, and nothing would please him.  So we got his pyjamas on and asked him if he wanted to watch a DVD, to calm him down before bed.  And guess what he picked?  Fireman Sam of course!  He was relating everything in it to his experience today!  Little Izzie was sent to grannys house again, it's her second home now, we are in hospital first thing to get Oscar's bloods checked.  After that, all focus will be on London and what developments it brings!


  1. So great Oscar had such a lovely and exciting day!! He SO deserved it!!
    Good luck for this week you guys loads of thoughts, prayers, hugs and love being sent your way :)
    Nicky x x

  2. His party sounded great, every fireman sam fan dream come true! good luck 4 London, we'll be thinking & praying for you.
    Lara, Fra & the kids x