Monday, 13 June 2011

Blog: June 2011

20th June 2011

Well, the sleep over was a huge success!! Not sure if they got much sleep though ;-)

We had a very busy weekend :-) After soccer on Saturday there was a club meeting and then pizza for everyone!! Rafa was happy because it meant he had even MORE time to keep playing soccer ;-)

On Sunday morning we went to Fun City with Camp Quality. Gabriela & Rafael really enjoyed the laser tag game and the virtual reality machines :-)

From there we went to the Royal Children's Hospital - what???? Rafael was asking the same thing - hehehe :-)

CIKA had organised a tour of the research laboratory and we were invited. It was very informative. CIKA raises a lot of money for solid tumour research. One of the trials is the tumour vaccine that Rafael had. So, we got to speak to the Dr who developed it and see where it's made :-))) Also had a nice chat with some of the CIKA people :-)

17th June 2011

"Whoever Said That Winning Isn’t Everything Obviously Never Had Cancer" (Author Unknown) .......

13th June 2011

We are getting close to 3 years of fighting, and "maybe" I can say we are winning???

Clinically, Rafael is doing wonderfully. He's just a normal, typical 7 years old boy, albeit, a bit small ;-)

This week will be 3 years since he was first rushed to the ER with terrible leg pain :-( Who would have known that his not being able to walk wasn't really a hip infection!! It was the cancer that had spread to his femur :-((

Last night Gabriela & Rafael, with 2 of their friends went to a Challenge slumber party at the Hilton hotel :-))) Dom has gone to pick them up now - wonder if they got any sleep???

Just 3 weeks left of school for this term :-) It has been really cold here lately and it's getting harder and harder to wake them up each morning ;-) The traffic in the mornings is getting worse each year! When Gabriela started school, we used to leave home about 8am, now we have to leave at 7:30 am which means i have to wake them up about 6:30am :-(( Bbbrrrrrrrrr!!!

I have booked my place at the 2011 CNCF conference in Chicago :-) I'm looking forward to hearing all of the latest news first hand!

I am also part of a group that will use Facebook to promote International NB Awareness Week - July 18 -> 23. I'll post more details when we are set up. It's a collaboration between UK, USA and Australia :-)))

There is also a fantastic conference later in the year in Auckland that I'd love to go to. My dear friend Donna has been accepted as a speaker there!! Awesome :-)) She is a tireless advocate for all of us NB families xxx


  1. Awesome post Tash. Rafael is such a trooper. You and Dom are inspirational people. Keep up the fight, were all there with you. :))).

  2. Donna is coming to Auckland! this is news to me. very thrilled to hear this and if i could, i would love to be able to go to the conference too.

  3. 3 years!!! You and Domingos are really amazing. Hope to see you both again in the future.
    All my best for you all! :-)

  4. Rafael has the most amazing fighting spirit but he also has a wonderful family who offers him the most incredrible gift of strong love and unconditional support. Together with his medical treatments and the never give up attitude and love from all of you it is not surprising to see him being a normal 7 year old. You are all an inspiration and often make us realise not to sweat the small stuff and enjoy life everyday. You are an AWESOME family. xoxoxox

  5. Any chance you stop by on the way to Chicago?? Xxxx