Blog: June 2010

29th June 2010

OK, this is my 3rd attempt at updating - grrrr!!!

My heart is broken (again) today :-(((

Rafael's NB buddy Olivia was cured in Heaven on Monday night, peacefully in her sleep at 8:30pm. I am just devastated for Fiona & Brendan, who fought so hard alongside their only child :-(

Olivia was on the same schedule for MIBG therapy as Rafael. Even though they had to have separate rooms, we spent many an hour waiting ... waiting ;-)

Olivia was a bit younger than Rafael and we hardly ever heard her say "boo". But according to Fiona "she never shut's up"!!! :-))))

I nearly let the cat out of the bag at the Xmas party last year when I said that she was getting a DSi for Xmas - oops!! Thankfully she didn't hear what I said ;-)

Darling Olivia, as you can understand, it is very difficult for me to explain to Rafael that you have gone to Heaven. He does understand Heaven and knows that Grandad, Ruby and Cinza (the cat) have gone there before you :-( I have to wait for the right time to tell him, and that moment is not now. 

We will miss you so much and we cherish the photo of you and Rafael sharing a chair in Day Oncology. I can picture you sitting there, munching on your Macca's fries - not saying much, but taking it all in.

Love you Princess xxx

28th June 2010

I finally arrived home on friday night - all exams passed :-))

Gabriela & Rafael both had soccer on Saturday morning - it was so cold and muddy :-(( Yuck!!

Domingos took Rafael for his speech appointment on wednesday afternoon. Emma spent a lot of time with Rafael doing an assessment and we should have the results in a couple of weeks.

They were also able to catch up with Dr Peter (saving another trip on Thursday!!) It was very routine, just a checkup. Rafael is 106 cm and 16 kilos :-)))) - in his school uniform ;-)

Peter is very happy with results of the Indium, so now we just wait for the next round - 27th July and the scans that will follow. After that???? No idea yet :-( The blood results were all good :-)

I hope to get some good ideas whilst at the NB conference in Chicago.

The last few weeks have been very sad in our "NB world" So many new Angels up in Heaven, too many sad families left behind to ponder WHY???

11 year-old Sarah, 4-year-old Ember, 4-year-old Cody, 3-year-old Brenda ...

and so many out there doing it REALLY though at the moment :-(((

Gabriela stayed at the Hilton on the Park last night with 300 other noisy kids :-)) Poor Challenge volunteers, I don't think they got any sleep at all :-))) She had a great time, her friend Mia was there too. Gabriela came home proudly displaying a new "tattoo" AC/DC !!!

I've ended up changing all of our holiday plans and today have been madly searching and booking things on the Internet :-) So now  Gabriela, Rafael & I are off to DISNEYLAND!!!! and then Chicago - woohooo - a holiday :-)))) We are all very excited

I'll try to update as we go along xxx

ps: We just passed 1000 views to Rafael's page since just before I made it private - thanks guys!!!! Although I must say, you must check in a lot to add up to 1000 as there are honestly less than 15 people who actually come in now and read Rafael's news. Big thanks and love to you all xxx

22nd June 2010

I flew home for a quick trip on Saturday night and came back to Sydney on Monday afternoon - whooh!!

The children were both very excited to see me :-)))

Managed to find Rafael's blazer - in the back of my car - oops!!

I took Rafael in for his 4 week post Indium blood test on Monday morning. He is so brave and strong!! He now has the butterfly needle without any numbing cream :-))) He says the jab hurts, but the rest is fine, plus it's over so quickly ;-)

Today is Liviane's 9th Angel birthday :-(( Where does the time go?? I wonder what she would be like and how our family would be with her still in our lives?? I miss her heaps, especially on days like today :-(( Happy Birthday little Princess

xxx

18th June 2010

This week marks 2 years straight of battling this beast :-((

Thankfully, Rafael is doing very well, he lives with cancer and gets on with life :-))

Please pray for Ethan, his Mum's blog entry from today entitled "LIVING IN A DREAM WORLD....is very moving

http://www.caringbridge.org/visit/ethansmith

Mary Catherine had her cord blood cell transfusion this week. The cells came from a donor in Germany! Please keep her in your thoughts

xxx

16th June 2010

I am in Sydney for my training. We had a day off today and I was able to go and buy a mobile modem and some food for my room :-)))

Dom is at home alone with the children, doing it tough I think ;-)

All is ok. Rafael has 2 appointments next week - speech pathology on Wednesday and Dr Peter on Thursday. Unfortunately, Dom will have to juggle both on his own!

Received a nice email from Dr Peter the other day regarding some trial questions I had. He is in the US at the moment, attending some conferences. He did say that the radionuclide therapy responses are looking very promising :-))))

xxx

10th June 2010

Prof Hicks didn't get the full blood test results back - huh? Chemistry is all fine, but no FBE news.

My week has continued to be crazy busy! I passed my exams on Tuesday - yeah!! I am going to Sydney on Monday for 12 days!!!! What? Am I crazy?? It will be very interesting times ahead here - me in Sydney, Domingos still not walking, driving, cooking, cleaning etc - LOL ;-)

I am transferring to the Airbus A380 - the really big Double Decker planes :-) I am happy with my decision, but dreading being away from home for so long :-( Oh well, they'll cope xxx

7th June 2010

Busy times here!!!

Gabriela & Rafael had a fantastic time at Camp this weekend. Once again, we did not get to much information from them ;-)

I am so sick with this virus that's going around :-( Couldn't go to work for 2 days!!

Rafael had his speech pathology appointment this morning. All went well. He has definite areas that need to be corrected. They'll get back to me on the best plan of action.

Rafael did his 2 week post Indium blood test today - and can you believe I forgot to call and ask the results??!! We popped upstairs to day oncology to say "Hi" to Lisa and we saw Rafael's buddy Jordan there, with his Mum :-))) Both were very happy :-))

As I said, it's crazy here!! I have to do some exams tomorrow (that I wasn't expecting) and now I've found out that I have to go to Sydney next week for 8 days - and Domingos still can't drive!!!!

Ahhhhhh - what a mess :-(

4th June 2010

Melina passed away yesterday :-( She was only 14. Love to Lisa & Joe xxx

I finally gathered the courage tonight to tell Gabriela & Rafael about Ruby's journey to heaven. Gosh, I thought I would be strong enough by now. I didn't want to tell them when I was a blithering mess!

Unexpectedly, it was actually Rafael who lost it :-( and that sent me into fresh tears :-( He cried a LOT and said how much he would miss her. Gabriela was a little confused as to "which Ruby"??? Huh? and then we worked out she meant - Ruby with long hair and Ruby with a Micka haircut :-((

They are both off to Junior Camp tomorrow. I'm sure they'll have a ball, even though it's going to be freezing!!!  xxx

3rd June 2010

Another very sad start to the week in "our" NB land :-( 10 year old Luke Bailey, fellow RCH warrior lost his long and hard struggle :-( His Mum Leanne was one of the 1st NB Mum's I ever met :-( We last saw Luke in February at Peter Mac, he was waiting to do radionuclide therapy like Rafael, but instead had MIBG (which Rafael had last year). Not sure of the reasoning etc? Just so sad that another child has lost this battle!!

And some of the families I keep in touch with overseas are doing it really hard too :-( I HATE this disease!!!!!!!!

Please pray for beautiful Melina and she finishes her long and hard 6 year battle 

http://www.caringbridge.org/visit/missmelina

and also Mary who is struggling to get to Bone Marrow Transplant for secondary cancer

http://www.caringbridge.org/visit/marycatherinevirnig

These 2 young women are part of the "voice" for all of our young children, who do not understand the full extent of what they are going through :-(

xxx

ps: I'm sorry, I also forgot to mention gorgeous Lauren www.carinbridge.org/visit/lsm 

She is in ICU after suffering a massive stroke due to tumour in her brain :-((((