Monday, 7 February 2011

Blog: February 2011

26th February 2011

Rafael had his 1st Grade 1 Oral Presentation on Thursday. I have to say - I was VERY impressed! He decided his topic would be killer whales. He researched it all by himself on the internet, wrote his own speech and asked us to help him (a little bit) to build a whale!!

I didn't hear much about how the presentation went, but he said everyone liked his whale - it was almost bigger than him ;-)

Also, Rafael has switched instrument this year :-( His piano teacher also teaches guitar and at the 1st lesson, he brought a little guitar in to show Rafa. Well, that was it - he was hooked ;-) Let's see how he goes :-))))

21st February 2011

Today marks 2 weeks since Lucas went to Heaven :(

I made it home from LA in time to attend his funeral. It was such a sad day! It was also Ruby's 8th birthday :( In the morning, I put on my Ribbons for Ruby and Gabriela wanted to wear hers to school too, in honour of her friend.

Dom and I had a very draining and emotional day :( Lucas was honoured with a beautiful service, a full mass, surrounded by his loving family :)

There was not a dry eye at the end, when they played a recording of Lucas singing "I Can Sing a Rainbow" - heartbreaking :((((( xxx

I received a beautiful email from Prof Rod Hicks when I got home from LA, it made me cry :( We have written again, asking why's and what if's and what next for the radionuclide program at Peter Mac???? He is truly an amazing person xxx

I was meant to go on a 9 day trip last Friday, but managed to get out of it. My head is just "not into that space"!!! How could I go away for 9 days and leave my family??? Now I am in Singapore instead and get home on Wednesday instead of Saturday - much nicer ;)

Gabriela had her 1st swimming carnival for school last Friday. She swam 50m backstroke, came last and was very upset - ai carumba!! At least she did it!! ;) Then she swam 25m freestyle and came 2nd - yeah :)) Of course, she was very happy with that ;) All of that from a little girl that doesn't even train at a pool :-)))

As for our meeting with Dr Peter a few weeks ago - he is not prepared to wait any longer than 3 months for follow up scans. Therefore, in April, Rafael will have EVERY test again, then we'll meet Peter and see what happens! If his blood test comes back normal again, he won't need one any more, each time he sees Peter he has 1 the day before ;) They will check his GFR - kidney function and see if it's recovered yet? He will also have a CT and a Gallium PET scan. Last test will be a urine chateclomine that detects NB secretions - a clear indicator of NB activity.

So, we do all that 1st week of April and see Dr Peter again on 8th April!

10th February 2011

I am now in LA :-( I could hardly stand to put my uniform on and go to work, but I did :-(

Anna and Adam have placed a beautiful obituary in the Herald Sun
I heard from Anna today, and Lucas' funeral will be next Monday )14th Feb). In lieu of flowers, they are asking for donations to Challenge -

My family in Adelaide have made this their family charity and we are supporting each year with The Biggest Aussie Pie Night. I know that Anna and Lucas were able to attend Challenge playgroup - a safe and infection free environment for under 4's ;-)))))))))) As well as attend many events held by Challenge.

If you remember, Gabriela and Rafael have been to many camps, outings and parties and have had a ball!!!
If you can find it in your heart to make a simple donation in Lucas' name, we and the Marchio's will be very grateful xxx
7th February 2011

Sorry for the slow updates this month.

I have lot's to write, especially about Rafael's appt with Dr Peter last week .....

But I can't do it right now.

I received a text tonight from our dear friend Anna saying that Lucas had lost his battle with this awful disease, peacefully in her arms.

Dom is away, in Sydney, and I am just devastated for them!!!

Please keep Anna, Adam and Matthew in your prayers as they pass the difficult days ahead