Friday, 8 June 2012

Blog: June 2012

28th June 2012

Rafael was meant to have his check up with Dr Peter yesterday, however - I had to change it ;-)

You see, their school decided to bring it's swimming programme forward to this week, and Rafael was very upset about missing out on 1 lesson ;-)

I managed to get a new appointment next Friday and that is better anyway, as it's in the school holidays :-))

Last Friday marked Liviane's 11th Birthday :-( I often think about her, especially when I look at Lela and wonder what she would have been like ...

I have added the picture below of the Jan V's June 2012 scans for you all to see :-))) If you can view it on an iPad or even iPhone, it's easier to see, pinch and zoom etc.


7th June 2012

Last week Rafael was very sick with a respiratory virus. After speaking with Professor Hicks, they decided that an FDG PET scan might get to the bottom of his issues. Long story cut short, it showed nothing at all, except a respiratory virus!!

Fast forward to today - scheduled follow up GaPET - 3 months from last dose of Lutetium.

Given the results we'd seen last week, we weren't expecting any bad news :-)

However, the news was beyond our wildest dreams!! 

For the first time ever, Rafael has No Evidence of Disease (N.E.D.) !!!! His scan today was amazing!! The difference from January is incredible :-) Today Rod could not find one tiny dot of cancer - ANYWHERE!!!!

Last night Rod sent us a 3D image of the scan, I'll post it here soon when I have time.

Dom & I didn't jump up and down, or cry - we just sort of went "Oh - wow!!" ;-)) Hehe, delayed shock??

Thank you for all of your love, friendship and support over the last 3 years, 11 months and 23 days!!! Our roller coaster ride is not over, Rafael is not in remission, but NED is as good as it gets for NB patients :-)

For now, we can get on with living life!!

I have uploaded to Youtube the presentation that we prepared for the Pinnacle Medical Centre Ball last year.

It is unlisted, which means people can't search for it or stumble across it. Only people with the link can view it. However, if you feel like sharing it with someone who might also like to view it - that's fine :-)

Much love