Blog: September 2011

17th Sept 2011

We are busy getting ready for our trip!! Unfortunately, the flight are not looking very good at all :-( I am disappointed, I am using my LSL trip - and we can't even get a seat!!!! Wahhh :-((

Today is Dom's birthday and he has been busy shovelling dirt onto the back lawn all day - bet he'd rather be in Cabo ;-)

The Performing Arts Festival was really good - both G & R had such a fun time :-) 

Last thing on our "to do " list was for Rafael to have a urine test done so that the results would be ready by the time we scan - done!! With 1:15 to spare - whew!!

We gave Gabriela an early (very) birthday present today - her very own camera!! It's so good, I hope she let's me use it ;-)

We are all very excited :-))))

7th Sept 2011

Well - we finally have a date!!! Thursday 6th October for a Ga Octreotate at Peter Mac, 9:30 am :-))))) Just received the phone call! I had emailed Rod last night begging for a date as we are going overseas next week and we needed to know when we'd have to be back???  ;-)

Rafael has been well, fully recovered from his chicken pox :-)

He had a repeat blood draw last night and we are off to the GP tomorrow to review those tests as well as for Rafael to have his final 2 vaccinations - Whooping Cough and 2nd Hep!!

I also finally heard from Dr Peter last night, after writing a very long email :-( As I knew, he is at Monash until October. He was concerned that his nurse had not contacted us at all!! He will be back at RCH in October, but he is changing roles :-( He will start looking after the long term follow up clinic :-) So he'll still be Rafa's doctor (we hope!) 

Prof Hicks wrote a great letter for us, detailing Rafael's treatment. He put's it better than I ever could ;-)

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"I have been involved in his care since March 2009 when he presented with residual disease following intensive chemotherapy performed at the Royal Children’s Hospital in Melbourne. Since that time he has received 3 cycles of I-131 MIBG therapy, a form of radioisotopic therapy that is widely used throughout the world, between March and July 2009. Unfortunately, despite a partial response to this therapy, it failed to clear his residual disease.

We demonstrated residual disease using a very sensitive form of imaging that is only available at very limited number of sites in the world and that has been used in only a handful of children. This led to us using an experimental radioisotopic therapy called peptide receptor radionuclide therapy (PRRT). Rafael was one of the first children in the world to receive this treatment and received 3 cycles of treatment between February and July 2010. Follow-up scanning has indicated an excellent response and he remains in excellent health.

He is, however, at risk of relapse of disease and ongoing monitoring of his disease status is required with a view to further PRRT if there is evidence of progressive disease. "

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Next week both Rafael and Gabriela will have their school play - Wed & Thurs night, then on Friday we are heading off to Mexico for 10 days!! The temp there at the moment is 33C/27C - bring it on!!!

xxx