Friday 21 December 2012

Blog : December 2012

31st December 2012

We had a great New Year's Eve at our friends house :-) The children all played together and then they helped Rafael take his 4 little pills :-)) They went down very easily!!

30th December 2012

After our talk with Peter the other day, I emailed Rod to find out if there could be some kind of mistake at all??

Tonight he wrote back, and I cried!! Seriously - he is just the most amazing doctor anyone could wish for xxx
 ---------------------------------
Dear Dom and Tash

The tough thing about MRI is that following treatment structural abnormalities remain. I suggest that you think of them like scars. These can be at various stages of evolution from a new, healing scar through to an old healed scar (as you will appreciate, one is red and the other white). 

That is why they look different on MRI. We hope that most of them aren't active and it is great the Rafael has no symptoms but we know that GaTate scans can detect disease before it is symptomatic.

It has been a source of great joy to me to be involved in Raf's care in 2012, despite the disappointment of his recent relapse and I wish us all a happy 2013 enjoying every life event in his rich life


29th December 2012

Chemo didn't go so well tonight :-(

Dom got the 1st one down. Rafael spit the 2nd one up and I had to really push and struggle with my gloves on the get it down. 3rd one - no problem :-) But the 4th one!!! OMG - he just wouldn't swallow it!! I had to keep trying to push it back down his throughout, it dissolved, there was chemo powder all over his tongue :-(

I guess my last push was too much and he retched - then vomited everything up!!! Oh no! We could not start again, so that is one whole dose missed!!! I wonder if any was absorbed at all???

28th December 2012

We saw Dr Peter today.

He was very happy that I gave him one of the new Neuroblastoma Australia badges that have been made. He immediately put it on his lanyard :-)))

Rafael's blood counts were good, although his platelets have dropped a lot in 2 weeks. His lymphocytes are on the increase :-)

Can you believe that Peter is still not convinced by what the scans are saying??? He just doesn't "see it" on the images. We saw the MRI today and it does look the same as the January one. However the radiologist's report states - multiple metastatic bone lesions!!

We have a date for Rafael's scan at Peter Mac - 16th January. Let's see what that shows.

Anyway, Peter was still happy to proceed with the 2nd round of Temozolomide, but said he may not do the 3rd round, depends on scan at Peter Mac.

He was very happy with Rafael overall. As always, Rafa was a giggly little worm while Peter tried to examine him. Peter even took his blood pressure today, which he never does. It was very normal, but Peter commented that with NB, it's often elevated. Hadn't heard that before ;-)

Gabriela had a friend sleeping over, so the 2 girls held his hand while he cried and complained about having to take the tablets again :-((

He got himself so worked up! Dom managed to get 3 down and I struggled to push another one down with gloves on as it had started to dissolve :-((

27th December 2012

We spent the day at our favourite beach today - Portarlington :-) The water was cold, but that didn't stop all of the children eventually getting in and having a great day :-)


25th December 2012

Santa came quietly in the middle of the night, we went to bed so late, 2am, we were worried he wouldn't come!!

We had to wake up Lela and Rafa at 10 am to come and see the tree and all the goodies he'd left :-)

It took them a modest 45 minutes to unwrap all their gifts :-)))

The rest of the day was spent relaxing, doing nothing, still digesting dinner from last night.

In the evening we went to our friend Jo's house for another dinner!! The children all had a wonderful time running around, screaming and chasing each other!


24th December 2012

A huge day of preparation for a wonderful Christmas Eve celebration :-)

At one stage I was snowed under with so much prep to do, I called one of the guests, Susan and begged her to come and help :-) She brought her Dada a long and he was amazing! Peeled the vegies, stuffed the turkey, carved the ham and scored the pork - whew!!

Dom, Gabriela, Rafael and Bridget's family all went off to Church together while I kept an eye on the food cooking. Our friends started arriving and when they got home, everyone was here :-))

I made a lasagne for the children and they sat at one table and we adults, ate a very traditional Christmas dinner in peace ;-)

We had a wonderful night, ate too much, drank too much ......

23rd December 2012

Happy 10th Birthday Lela!!!

I arrived home from Singapore with about 5 minutes to spare before she woke up :-)))

We woke up Rafael and gave Gabriela her presents and breakfast of choice :-)

We didn't do a cake today as she's having her party in January.

Wow, can't believe we have a 10 year old!!! Has gone so fast :-(

13th December 2012

Junior School Speech night and the last day of school :-)))

11th December 2012

Annual Westbourne Carol service tonight. It was so lovely to hear all of the school choirs singing Christmas carols together :-) I didn't cry this year ;-:

8th December 2012

Rafael had his MRI this morning. Gabriela and I went with them, but had to leave to get Lela to Portuguese class on time. By the time I got back to RCH, Rafael had just finished and was having McDonalds for lunch :-) Dom said it all went well, Rafael watched a movie throughout the scan and laid perfectly still :-) We got them to do Rafa's 2 week blood test while we were there, a little early, but saved him having to have another needle on Tuesday.

That night we had received tickets to watch a dress rehearsal of War Horse. My cousin from Adelaide was in Melbourne and she came along too :-) 

I don't think the children enjoyed it - they seemed a bit bored :-( We enjoyed it though!

7th December 2012

2013 day today, Gabriela and Rafael found out who their teachers will be next year and spent the day in their new classrooms. Rafael is very happy he has Mrs Cameron, but more importantly - he is with most of his friends + his BFF - Kane :-)))) 

2nd December 2012

Rafael took his last day of chemo while I was on my way to Singapore. He was so excited and happy that he'd taken all 4 (with Daddy's) help that he wanted to call me straight away and tell me - too cute!

Dom found the best "system" was to just push the pill to the back of Rafa's throat and then he'd swallow a little water. No stress, no tears :-)

1st December 2012

Oh dear, Rafael just doesn't like the idea of having to swallow these little tablets :-(((



Annual Challenge Christmas party today :-) Gabriela and Rafael even went on the Gravitron this year! Lela was screaming so much, but after a while she calmed down - braver than me ;-)

We saw lots of our cancer friends there, a nice day.

Friday 7 December 2012

The Truth 365

This is THE TRUTH 365. 

Imagine hoping your child makes the age of 7, and then, realising that despite your child reaching that milestone, its with many many battles to follow, or worse, your child doesn't even make that milestone. 

Childhood cancer needs YOU. 

It's a long video, and I know not everyone has the time to watch it, but please consider it. 

http://www.youtube.com/watch?v=oljTL1iuMmY

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

xxx

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 ;-)

xxx

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

http://rafaeldomingosmoraes.blogspot.com.au/2012/03/video-peter-mac-supercar-sunday.html

xxx

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 :

BANK - 

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.

xxx









Friday 5 October 2012

Blog: October 2012

28th October 2012

We just completed an exhausting weekend as crew on the Ride to Conquer Cancer :-))

It was worth it - what an amazing weekend we had :-)))

Our 3 riders were awesome, especially Martin who is super fit!! He wasn't even puffing after arriving 4:35 hours later!!

Our youngest rider, Robert, really struggled with the hills in the Yarra Valley :-( He friend his best, but could not continue on the second day. We are so proud of him!!

Martin was on a mission the second day and blitzed it in 3:50 hours!! He was close to first place ;-)

Dom and i worked as part of the food service team and we helped make over 4000 cafe lattes!!!!!

Rafael's Warriors raised a whopping $17027 :-))))))))))))))))))))

The big news was the the Ride was a record breaker! Highest ever single fundraising event in Australia history - $6.2 million!!! All for research at Peter Mac :-)))))))



5th October 2012

Rafael had his check up with Dr Peter today.

Another milestone - he weighed 19.1 kgs!!!! :-)))) and is 115 cm tall xxx

All was good, Peter has booked him for another GFR to test his kidney function.

I forgot to mention that Rafa had to use a toilet at EVERY airport in the world!! Usually when we were in a long customs or security line ;-)

Peter also wrote a referral for his next GaPET scan, which is booked for 23rd November :-(




Saturday 29 September 2012

Blog: September 2012

29th September 2012

Finally home after 6 days of travelling - arrghhh!! Have I said how much I HATE staff travel ??

We could not get one single flight out of Brasil to Chile, we looked at going via everywhere, but not luck.

Therefore we had to fly to Atlanta and then LA, which is the 1 airport I didn't want to go to :-( We stayed at an airport hotel for 2 nights and the seat availability on the flight to Melbourne just kept getting lower and lower.

Before we had to set off to the airport for a flight that we probably wouldn't even get on, I found a flight from Hawaii to Sydney with Jetstar that had 100+ seats available :-)

So, we took another flight, stayed at another hotel and spent a night in Honolulu!!!

Made it home very tired, but not too jet lagged ;-)

24th September 2012

We've just come back to Brasilia for 10 hours!!

We spent a wonderful weekend in Rio where I celebrated my birthday in style - Sugar Loaf mountain, Ipanema beach and Porcao restaurant for dinner!!!

On Saturday we went to Corcovado early in the morning, to beat the crowds ;-)

Gabriela & Rafael LOVED seeing "Baby Jesus" :-)))

We stayed with our dear friend Sergio, in Copacabana!!! We walked to the beach.

Unfortunately, Rio was having a cold snap - it was only about 20C, so we didn't go swimming :-(

20th September 2012

This week was mostly spent catching up with friends and doing some more tourism and shopping in Brasilia. Our holiday is going so quick!

14th September 2012

We spent the last 6 days in Salvador, Bahia!!! The weather was perfect, about 32C

We stayed at a resort on the beach and we took Idayana with us. She is Dom's little sister and also Gabriela's Godmother :-)

The plan was for her to stay in 1 room with G & R and we'd have the other room.

Rafael's fever came back on the 1st night and he spent the rest of the holiday in our room ;-)))

We did not have a thermometer with us, but it seemed very high. We asked the hotel about a local pharmacy and were very surprised to learn that they have an arrangement with a local clinic and that a doctor could come and see Rafael - free of charge!

The doctor came, but she could find no reason for the fever, so we just let Rafa rest. He spent the whole day in bed, sweating and sleeping :-((




The next day he seemed better, but then the fever came back again :-( This time the Dr gave him some antibiotics and after 1 day, he was back to full strength :-))

We took a tour up to visit the Tamar turtle project at Praia da Forte and on the way back stopped at Praia Gurajuba for lunch and a swim :-)) OMG - it was heaven - I could live there ;-)

We also spent an evening in Salvador city, shopping at the markets, visiting some of the 365 churches and dining in the Pelourinho district :-)

9th September 2012

Fun times catching up with friends and having too many beers ;-)

Dom's family had a big anniversary party in a BBQ restaurant. Just the extended family was about 100!!!

They had a photographer there and we have some great shots!

Dom's favourite is the one of ALL the extended family