Wednesday, 28 November 2012

Blog: November 2012

28th November 2012

We didn't have to get to RCH 1 hour early as Peter Mac had already done Rafael's blood test yesterday :-)

Peter started out by telling us that he had to apply to a special board for Rafael to start taking the Temozolomide and that the approval should be through by Friday!

I said "That's not going to work as he needs to start taking it today, while the radiation is still active". I suggested he call Rod if there was going to be a problem.

Peter called the pharmacy and they had it in stock, so he wrote the prescription anyway, expecting to get the approval later ;-) However, if it's not approved, then we will have to pay for it instead of the hospital. That's ok, we'd pay anyway!! However - we forgot to ask him how much it costs!! When we got home, I wondered if we'd just "sold" our house??? LOL

The pills are tiny, like a tic tac and Rafael has to swallow 4 of them. He will also have another 2 cycles of the same chemo - December and January.

Peter has also asked for another MRI to compare with the GaPET scan. We took the card downstairs to try to make a booking and the receptionist just rolled her eyes at us!!! They said they'd call us :-(

Getting Rafael to swallow the pills was going to be a challenge, we knew that. But poor little guy, he tried so hard! I broke one open and gave it on a spoon of apple sauce, but it seemed that some of the powder stuck to the spoon. He managed to get one capsule down with water, the other 2 got stuck in his cheek and partly dissolved before he got them down :-( Lot's of tears and complaining :-((

27th November 2012

We were told to be at Peter Mac by 10:30 am to get the ball rolling. Melbourne had huge thunderstorms during the night and the roads were really bad :-( We made it there a little late, only to have to wait hours to start!!!

Rafael needed to have 2 x canula's put in his arms for the infusion. 1 was a back up. Jessy managed to get the first one in perfectly, in fact, she spilt lots of blood!

When she moved to Rafa's other arm, he said it hurt and cried :-( Jessy lost both veins after getting the needle in :-( We tried to convince Rafa to let us use his foot - but he wouldn't have a bar of it ;-)

Eventually the Dr's agreed that 1 would have to do.

We went up to the 9th floor about 2:30 pm, but the nurse took ages, actually, everyone took ages and the amino acid infusion didn't start until 3:25 pm!! It has to run for 4 straight hours, so we knew it would be a late night :-(

Dr Grace Kong have the Lutetium infusion and Rafa immediately complained of pains in his chest. He was uncomfortable and it was hard for him to explain. Grace said it can happen with the Lutetium. They had to slow it right down - just 1ml of Lutetium was needed, but it took 1 hour to flush it very slowly down the line.

After that, we just had to wait until the amino acids were finished.

Prof Hicks came up twice and we managed to have a really god chat with him.

We can hear in his voice, and the things he says, how much he really wants to save Rafael. He is looking into an experimental alpha radiation in Germany for Rafa!!!

We finally got home about 8:30 and almost fell into bed!!

Off to RCH tomorrow to see Dr Peter and pick up the chemo


23rd November 2012

Not the news we were hoping for :-(

We were not too surprised to see some new spots on Rafa's scan - but to see so many - gosh!!!

We kind of had a hint that the scan wasn't good because Rod took ages to see us and when we went into his office, one of his colleagues was there too!

The scan shows that the Lutetium worked, as all of those spots from January are still gone. However, adjacent to those old areas, new ones have sprung up. Rod think that some cells are just too small to get hit by enough radiation before it zips onto the next cell :-( In typical NB fashion - it only takes 1 cell to take off.

By the time Rod showed us the scan, he had already called Dr Peter and discussed a plan :-)

He is booked in for another round of Lutate next Tuesday and on Wednesday he will start a 5 day course of Temozolomide. A different chemo than the one he had in March. It's also oral, capsules - have no idea how i'm going to get Rafa to swallow them :-(((

Dom and I are very flat tonight, as you can imagine. We are scared and we just hate this disease so much!!!

We wonder if Rod thinks we are strange because we don't fall into a heap and cry when he gives us bad news???

21st November 2012

Can't breathe!!! - Geez - will this ever get any easier?? Rafael will have his follow up Ga PET scan on Friday at Peter Mac.

It's been a roller coaster few weeks! Not sure if you read my other blog "What price?".

I found myself so exhausted with stress and emotion after Kathy's emergency surgery - it really knocked me :-(

Rafael has been well, complaining of odd pains here and there.

I went to LA on Saturday and on Sunday night, Rafa got sick :-( His cheeks were really red, with no fever and he was very lethargic. He was the same on Monday morning so Dom stayed at home with him, while I was away :-(

By the afternoon he had picked up a lot. Seemed fine to me when I saw him on Tuesday afternoon ;-)


2nd November 2012

Welcome to Rafael's new blog :-)

Be sure to check out the photos of our wonderful trip to Brasil in September.

I've also added a cool video from the Peter Mac Supercar Sunday


Tuesday, 27 November 2012

Photos: Lutetium Peptide Receptor Therapy

Got it in first go :-))

Oh no - you have to do another one?!!!!

This is going to hurt!!!

Yep, it did hurt :-(((

They tried twice on my right arm but couldn't get a needle in :-(

Professor Rod Hicks and his favourite patient

Only 1 hour and 22 minutes left to go !!!

Tuesday, 13 November 2012

What price???

This post is not about Rafael or us......

This post is dedicated to one of the most beautiful, loving, amazing Mum's you could meet :-)

My friend Kathy was suffering from vertigo a few weeks ago.

This led to a CT scan, then an MRI which showed a mass on her brain.

First diagnosis (dx) was a benign tumour that had been there a long time :-)

More MRI's followed ...

Next dx was very aggressive, high grade brain tumour :-(

This was followed up a week later with a specialist Neurosurgeon appointment who said that the tumour wasn't high grade - just moderate - great news :-))

Prior to that meeting, Kathy heard about Dr Charlie Teo in Sydney, who is a world renown Neurosurgeon.

She asked us all to email him and beg him to get her an appointment asap. While we all busily emailed, his office came back with a  "Please stop, we'll fit you in next Tuesday" ;-))

Yesterday Kathy saw her GP who had another radiologists report which said that the tumour was high grade!!!!

Very conflicting results and very distressing for our dear friend!!

Well, today was THE day - she was finally meeting with the "star" - Dr Teo.

Which Dr would he agree with? High grade or moderate grade?? Would he say it was all a mistake and those "Melbourne" guys have no idea???

..... No, in fact, Dr Teo saw that Kathy's tumour was so dangerous, he scheduled her for immediate surgery tomorrow morning at 6:30 am!! :-(((

We are all in shock!! We were all hoping that there had been a misdiagnosis somewhere!! But to hear that it's so bad, that she will die without this surgery, tomorrow, is incomprehensible :-((

Kathy and her husband have 2 young boys, about the same age as Lela and Rafa.

They were just going about their everyday lives and then THIS comes from NOWHERE!!! What the ***

And, to top it all off ...... Dr Teo's fee is a whopping $50,000!!!!

So, getting back to the start of my post ..... What price??? .........

What price would you pay to be here to see your children grow up?

What price would you pay to have THE top surgeon remove that monster from your brain?

What price would you pay to have the best possible start in the battle ahead??

What indeed? We are not often confronted with such questions! Most of us get to live our everyday lives, stressing over little things, concerned about what is next!

Well, my friend Kathy is facing her NEXT at 6:30 am tomorrow!!!! She is in the hands of an Angel :-)

We, her friends, are rallying to raise the funds for her Angel, so the she and her family can concentrate on her recovery! Not on how they will pay the bill!!

What price??? Please ask yourselves ...

Please share this on your wall, on your blog, at your work.

The Aussie spirit of mateship is amazing, and Kathy is our MATE!!!

If you are at all able to help this wonderful family - here are the details :


NAB BSB : 083310 

ACC : 147189282 

Account name FOR KATHY


14th November 2012

From Stephen - Kathy's husband:

"Just spoke to the doctor !!!!
Very happy with the operation , removed the tumor and everything else they could see . MRI in 6 weeks time and pathology results in 7 too 10 days . She should be a little more awake tomorrow !!!
Dr Teo you are an absoloute genius ................"

15th November 2012

Latest update from Stephen:

"Ok I am sure you have all been waiting for the next update ........ Kathy is being moved to her own room at 1130 , Dr Teo says that the tumor was BENIGN and that she could be coming home as early as tomorrow , depending how her recovery is , hopefully Saturday the latest . Couldn't have asked for a more positive result could we ???"

Can you believe it!!!! Benign!!!! That is just the MOST amazing news :-))) I am so relieved, as are the many 1000's of people who are following her story.