And it was Brasilian all the way - food, clothes, good company :-)))
Monday 26 January 2009
Sunday 25 January 2009
Sunday 11 January 2009
Sunday 4 January 2009
Saturday 3 January 2009
Blog: January 2009
Well we have survived the heatwave – just! The cool change came through very quickly on Friday and the temp went from 45.1 down to 33.3 in less than 1 hour :-) Then, in the evening, we had to endure a 3 hour blackout. Since we are on water restrictions as well, people are commenting “is Australia
Rafael did amazing well with all of his scans this week :-) We left home early on Thursday with angel cream already applied to his arms for a cannula to be inserted. First stop was CT and he was given a drink that had to be taken over 1 hour. Then up to day oncology for the cannula as well as dressing change and bloods. We got straight in and he was very good. Once again, he sat on the chair by himself and let the girls do the dressing change without too much fuss. He did need to sit on Daddy’s lap for the cannula, but Jane did a fantastic job, getting it in one go :-) We had some problems getting Rafael to drink the orange cordial for the CT. He put up a fight, but once he had a little taste and realised it was sweet, he happily drank the rest.
Next stop was nuclear medicine for the doctor to inject a radioactive dye for the MIBG scan. They decided to use the cannula as well, “since it was there”. Once again, he was a little trooper and was happy to watch the doctor do his stuff.
Back around to CT for the scan. Gabriela could not stay in the room, so we left the boys to it and went to get something to eat. Domingos said the scan went well and Rafael lay very still and breathed deep when asked :-)
Next stop, appointment with Dr Peter Downie. It wasn’t too delayed this time, about 45 mins. He has been away for 3 weeks and was trying to catch up on what tests Rafael had already and where we are up to. He could see the CT images already but did not have the doctor’s report. It seems the tumour may have shrunk a little bit more, but at this stage, they do not expect it to shrink much at all. Seems to have more areas of calcification.
The bad news was his GFR result. His kidney function is still low, just 41. Down a little from the last test :-((
We still don’t know what will happen next as Peter is waiting for the entire test results to come back. He did say that we might do the high dose chemo and transplant next. We see him again next Friday and will have a clearer picture then.
Back down to nuclear medicine for a quick 10 minute MIBG scan to check that the contrast was working. Just as we were going down in the lift, the air conditioning to that main building went out! It was 44C outside!! Thankfully we were not there long enough to feel the effects.
As we had been out all day, the house was quite hot when we got home, but the air con cooled us down enough to be very comfortable.
On Friday Domingos took Rafael in for the MIBG scan. It took about 1 hour and then they should have been off. However, literally 30 seconds before the scan finished, the machine stopped. After they got it working again, they had to repeat one of the scans for about 15 minutes! Rafael was very good again and laid very still the whole time :-)
I went to dinner at the café with 2 friends on Friday night during the blackout! It was fine, they had gas, we all ate, had a few drinks and just after we left, the power came back on!
Gabriela started gymnastics today. It was quite hot as it’s in a big shed. She seemed to like it, but in typical Gabriela fashion, she said she doesn’t want to go back because “the other girls are better than me”! Yes, hello, it was her 1st class!!! And also, when she fell of the parallel bars onto the mat – “it still hurt”! Precious little princess :-))) xxx
We finally put the children’s beds back into their own rooms today J Gabriela starts school again on Monday and those two just don’t go to sleep! They play and chit chat for hours, or try to watch TV with us. So enough was enough! Mummy and Daddy had to play hardball.
xxx
27th January 2009
Parabens Papai!!! Congratulations Daddy!!! .... and Alex, Paulo, Ling and Richard 
Not only are you ALL a fantastic support to our family, you have all been awarded an Australia Day Achievement Award!!!!!!!!!!! Now we know someone else "famous" 
Not only are you ALL a fantastic support to our family, you have all been awarded an Australia Day Achievement Award!!!!!!!!!!! Now we know someone else "famous"
We are getting ready for a shocking week of heat here :-( The forecast for Laverton is – Wed 43C, Thur 44C, Fri 40C and Sat 40C before a change on Sunday :-(( Thankfully our house stays quite cool, but those temperatures are extreme! Air con will be getting a work out!
We have all had a good week so far, been very busy. We had planned to go away for the long weekend, but instead, we hired a mini skip and had a massive clear out of our garage and under the stairs. We were brutal! Luckily we hired the 3.5 cubic metre instead of the 2.5 as it is full to the top! But at least now we can see our garage again :-)
We caught up with some friends on Saturday afternoon; the children had a great time playing.
On Sunday we went to the Waterstone Café for dinner as they had live music there. We ran into our friends Simone and Mark there and ended up joining tables – so much for their romantic dinner! Gabriela and Rafael were a little bored as they were the only children for a while. But all of that changed after we got them up dancing – they had so much fun! One of Lina’s friends, Deborah, took Rafael to dance and we didn’t see him for ages. We all had a really good night out, lots of fun :-)
On Monday we drove to Gil’s house which is about 1 hour from here. Again, the children were bored and there were no toys! Bad Mummy and Daddy! As expected, they ended up have a blast! Another girl came who Gabriela had been playing with at the Copacabana function and Rafael found a little train to ride around on. Eventually Gabriela decided she wanted to go for a swim. It was a bit hard for Rafa as he cannot go swimming due to his central line :-( We managed to get him in the shade on the side of the pool and he was happy to sit there dangling his feet and get splashed by the ball :-) It was Australia Day and Domingos, Gabriela and Rafael all wore Brasil t-shirts!! How patriotic??? :-)
A funny thing happened when we arrived. There was a Brasilian man and he introduced himself as Fabiano. After some chatting about “what do you do?” it turned out that he is Ney Fabiano from Melbourne Victory. The exact same player that Rafael was given a framed t-shirt at the Copacabana function! Small world. We managed to get some photos of them together; I’ll post the later on.
We had to take Pipoca (our dog) to the Vet today as he has been limping for a few days and it’s getting worse :-( He has ruptured his cruciate ligament :-(( Poor baby :-( Surgery could be anywhere from $3000 to $5000 :-( First we are trying a 4 week course of weekly injections to see if that helps
xxx
Happy AUSTRALIA Day 
23rd January 2009
Rafael did well yesterday :-) We arrived early for our appointment so that he could have a cannula inserted by the nurses in day oncology. Kari, the comfort first worker came in too and so did Gabriela. Rafael cried a lot, but was very brave and kept his arm nice and still :-)
After that we had to go down to nuclear medicine for them to inject a trace and they took the cannula out straight away. We spent another 3 hours there as he had to have blood tests at 1 ½ and 3 hours after the injection to check his kidney function.
Day oncology was so busy and loud today! Gabriela and Rafael played fairly well. Thankfully Lisa opened the playroom later and they played there where it was much quieter :-)
Rafael did exceptionally well with his dressing change. He didn’t even sit on my lap! He lifted his arm up and didn’t freak out too much at the washing part like he usually does. Carla was there and at one stage he looked at her to ask something and he said “Tia Carla …” It was so sweet to hear him speak to her in Portuguese :-)))
At home, he has been terrible to Gabriela. I don’t know what to do?? He hits her, yells at her, doesn’t let her play with the toys she wants to :-(( Poor Lela – she has been such a good sister and daughter throughout this xxx
20th January 2009
As expected the 4 hour blood transfusion took the whole day :-( Rafael was fine though, having fun playing in Day Oncology and then afterwards in the playroom. In fact, he didn’t want to leave! Still no white blood cells, so he will continue on GCSF injections until Monday.
He fell asleep in the car on the way home. We picked up Gabriela and Nanna drove us home (1st drive since her accident). We woke up Rafael when we were trying to get him out of the car and all hell broke loose! He had we his pants in his sleep and was very upset at being home and not at Nanna’s. He ran off down the street, yelling and crying. Eventually I picked him up and carried him home and got his pants off. We could not get him to calm down at all, nor get any pants back on him :-((( After an hour, I put a movie on and he slowly calmed down, but did not put any pants on until Dom came home!
Our weekend was good, and Rafael was well. We went to a birthday party on Saturday night were there was lot’s of children. We were a little worried about the risk of infection, but hey! We have to live sometimes :-) On Sunday we also went out for a lovely lunch at Sylvia and Tarcilio, the children had a ball. Gabriela rode her new scooter all the way there and back, he did a great job. Rafael didn’t want to ride his bike, so I drove (a few blocks)!
Domingos took Monday off work to help me with all of the appointments. Still didn’t work – Rafa threw another massive tantrum – twice! First up we had to take him to nuclear medicine for them to put a small needle in his arm to inject a trace. Duncan
Echocardiogram went well, very quick. Then it was back down to Nuc. Med. for another trace to be put in (this time through his central line) for the afternoon bone scan.
We had to wait 3 hours for that to go through his body and spent the time in Day Oncology. Rafael loves it there and adores Lisa, the administrator. At one stage, Domingos went to check on some appointments and blood tests, he was only gone about 10 minutes – but that was all it took for Rafael to loose his temper – again! He was helping Lisa, but she needed to get some work done and he didn’t want to leave the office and started to bash some of her equipment. I had to drag him out kicking and screaming! I managed to put him on a high bench so that he could not run back down the corridor to get back into the office. And that’s where he stayed until Dom came back! We had to leave to go and see a Dr, then Bone Scan. Rafael refused to say goodbye to Lisa, but as we got close to the exit doors, he did ask to go back and apologise.
Good news – Rafael has lots of white blood cells and neutrophils J doesn’t need anymore GCSF :-) Platelets are a little low – 28, but will be reviewed on Thursday.
Bone scan was fine, Rafael watched the same Thomas DVD that he always watches there. It took about 40 minutes and then we were off to pick up Gabriela and go home :-)
We didn’t get his dressing change done today as planned so that we could get it done on Thursday instead and bring it back into line with our clinic days
It has been VERY hot here the last 2 days, over 40C today :-( Cool change came through very quickly and nicely :-)
xxx
A quick trip to the hospital yesterday – we got there at 10 am and left at 5 pm ! As expected, Rafael did need a platelet transfusion (2 hrs) as well as another 2 hours of IV fluids as his kidneys are still a bit off.
His platelet count was very low, just 12 and he still has no white blood cells – zippo!
He needs a 4 hour blood transfusion too, but there was not enough time for all 3 yesterday so we are off to day oncology again this morning :-(
xxx
14th January 2009
It has taken me all week to find some time to sit down and write about the lunch last Sunday at Copacabana International…. Sorry for the delay x
Where to start? What to say? Sometimes it feels like there is not a word “big” enough in the dictionary to say “Thank you”. How can we thank everyone who helped organise Sunday, as well as the 300+ people who were there?
I don’t want to miss out on thanking anyone, so I will wait for Anete to send me an email with some more names. However, for now, special mentions are – Anete da Silva for her passion, love and support for taking on the project and turning it into an awesome, unforgettable day. Didi Fonseca – owner of Copacabana – how can we thank you enough? Muitos obrigadas e mil beijos. Jairo – for generously donating all of the Brasil flags. Ruiz and the team at SBS – thank you for your donations, as well as your time and participation. Mark and Stuart – the wonderful auctioneers. Simone – who started the ball rolling ... More to follow xxx
Rafael was so funny as we had told him the lunch was “all about him”. Well, did he let us forget? No way! He is even still saying it’s all about him!
Joe – you made Rafael’s day. He is so in love with the signed soccer guernsey!! Our friend had to take it in their car and he is very annoyed with me that we haven’t picked it up yet!
Didi donated his restaurant, ALL of the food and his staff all helped him make the day a great success. We didn’t get much time to chat to all of our friends, but I hear that everyone enjoyed themselves a lot. Copacabana is great for children as there is a stage in the middle and the children all had so much fun sitting on the stage and watching the shows.
Edval had his team perform a capoeira show as well as traditional Brasilian drumming. Edval said that they will be performing on this season of Australia
There was a Brasilian band too :-) – forgot the name!
Gabriela was gone for most of the day, we hardly saw her as she was playing with some new friends. At one stage we had to ask the audience if anyone had seen her! Found – upstairs watching a movie :-(
There were so many people there we didn’t know personally, most from the Brasilian community.
Thank you again, to all who came, and those who couldn’t, but sent messages of love and support xxx
Monday was very slow as we were all so tired. The nurse came to change Rafael’s dressing and do a blood test. That evening, one of the Dr’s called to say that his creatinine and urea were up and that he was probably dehydrated. He didn’t drink much water on Sunday. Every time I caught him, I tried to get him to drink.
So back to hospital on Tuesday for repeat bloods. Thankfully the levels had stabilised and we could go home :-)
Today spent by wasting 2 hours driving to a hearing appointment in Moonee Ponds for nothing!! It was a double booking! Just what you want to do in 38C heat – not! Thankfully the cool change had come through, but while we were driving home, Rafael vomited all over himself L I managed to pull the car over to a dirt strip on the freeway and strip him off. Poor little guy :-(
He has no white blood cells at the moment, but hasn’t had any fevers. He has lots of bruises though, so I suspect a top up of blood products will be on the cards tomorrow. We have an outpatient appointments and I am expecting it to be a long day :-(
Pictures will be up soon
xxx
10th January 2009
Not much been happening here. All Rafael has talked about is going to Nicky’s house for a play! He finally managed to go last night. We went out for pizza first and he did a good job of eating, except when he saw the oregano :-( Then he pulled all of the cheese off the pizza and just ate the base :-)
He has been eating well at home, just little bits, always Nutri Grain for breakfast and usually toast for lunch. Dinner can be a bit hit and miss, but he does like tinned spaghetti :-)
He doesn’t need the anti nausea tablets anymore and he takes his other medicines very well. He is used to them now. He doesn’t like to have his GCSF needle sin his leg at night, but that has also become routine now and he has organised so that Lela does the alcohol wipe, Domingos does the push and I tickle his skin :-))
He got a little upset on Thursday when he came to the realisation that his friends are going to school this year and he is not and that he is going to a different kindy and they won’t be there L Our only saving grace in this discussion is that he is not 5 yet and you “need” to be 5 to go to school (even tough here in Victoria, he was eligible to start)
Gabriela and Rafael had SO much fun playing at Nick’s last night. Maura and Xande couldn’t get over how “well” he s, especially since he just had a round of chemo this week :-)
On Wednesday night, Domingos took them to the local oval to watch him play soccer with the other local “boys”. Rafael took his bike and Gabriela, her scooter. They rode and rode non-stop the whole time and really enjoyed themselves. It’s so good to see Rafael like this :-)
xxx
7th January 2009
Rafael did well this round and got out of hospital as scheduled just after lunch and a “quick” 3 hour blood transfusion :-)
He was a little off his food, but his nausea is under control with medicine every 6 hours.
His favourite resident Dr is leaving on Friday to work in Sydney
Also, a lot of the nurses are about to finish their rotation through oncology and a new bunch will start in Feb/March – more people to get to know!
I had to write all of our appointments down in my diary as there are so many coming up – 19th Jan – echocardiogram, kidney function & bone scan all on the same day, 22nd Jan – hearing test, 29th Jan – MIBG scan, CT scan and consultant Dr appointment, 30th Jan – another MIBG scan. Don’t have a date for the bone marrow aspirate as yet.
Those dates mean that when we meet Peter on the 29th, he won’t have final results of scans, so we can’t imagine that a decision will be made that day.
Therefore, it seems possible that Rafael will be able to attend his first day of kindergarten on 2nd February :-))) It will be a good opportunity for him to meet the other children and visa versa. After that, we have no idea how often he will be able to go. It’s the local council kindergarten and is just 3 days per week, total of 10 hours. The council applied for funding and got an assistant to help Rafael when he is there :-)
He was meant to start school and it’s a bit strange for him as his friends are all heading off to school soon. However, he would miss too much this year and we felt he should just be a “little boy” for another year :-) No stress, no pressure, no bullying etc. He is very ready though, his writing and counting is spot on :-)
6th January 2009
Domingos took Gabriela and Rafael to see “Bolt” on Saturday and I had the pleasure of spending the time cleaning :-( They loved it, I believe more than Madagascar
Sunday was a lazy, pleasurable day J We started the morning with a huge, leisurely breakfast at the Waterstone Café. It was so lovely to see everyone again after the Xmas break. The rest of the day was spent with Rafael counting down the hours and minutes until he could go to Nicholas’ house to give him his birthday gift! As it turned out, Nick came here and until this minute, he is still asking me when we can go there!
Back to the hospital yesterday for his “6th” round of chemo. This is a bit of an “add-on” as it is not what he was supposed to have, but due to his adverse reactions to platinum based chemo, they supplemented a round of Cyclophosphamide and Etopisode. So far, he has been really well.
We weighed him at home on Sunday and were surprised to see that he was only 13.0 kg. His face has really filled out again and we thought he would be more. However, when he was weighed on the hospital scales – he was 13.8 kg!!!!! Yeah :-))) That made more sense :-)
Domingos went back to work yesterday, so I had the joyful experience of both Rafael AND Gabriela for the WHOLE day!!! Oh my gosh, what a LONG day! They had lot’s of fun, laughed a lot, wreaked havoc everywhere and wore me out :-( I didn’t sleep well at the hospital last night, but hey! They are not 5 start hotels after all!
Domingos and Gabriela arrived early this morning, before Rafael had even woken. That was it then, I had another full day on my hands :-)) The biggest problem was that we were in a twin share room and my 2 were just SO loud!!! ALL then time – grrrrrr!
Rafael is due to finish chemo tomorrow around lunch time, so hopefully nothing holds us there for much longer!
We have a HUGE list of appointment to attend in the last weeks of January before a final decision is made regarding his next step.
xxx
2nd January 2009
Happy New Year
We went into the city for the family fireworks at 9:15pm . The last few times we have been, Rafael loved the fireworks, but hated the noise and usually covered his ears over. Not this time, he loved it all! We caught a train in and that pleased him as well. We decided to only go as far as Federation Square
We made it to the party in good time and we slowly counted the younger children nodding off before we reached midnight :-) Rafael and Gabriela made it, with Rafael falling asleep not long after and Gabriela making it all the way until we arrived home at 1:30am :-)
We thought they would sleep in a lot on New Years day but they were both up by 10:30 am . Thursday was a lazy day; we were all in “slow motion”.
Today we went into the city again, this time by car. The Brasilian community here in Melbourne
Copacabana restaurant has printed a very gorgeous flyer promoting the event xxx
Afterwards, Rafael had another surprise. One of the ladies at Domingos work, Emma, won a $50 Myer voucher. She then turned around and gave it to Rafael! How sweet is that?? So today we finally had the opportunity to take him there to choose some toys. He made a beeline for the Thomas section and was very happy to buy Cranky the Crane which he has coveted for months! He also bought Gabriela another Barbie (can a girl have too many?). That left Mummy and Daddy to foot the bill for the difference in price on another Thomas train track set!
After a late lunch, we finally headed home at 3 pm ; Rafa almost fell asleep in the car, until Gabriela stuck her smelly sock in his face! Ah, children aren’t they so cute – NOT!
Since Rafael is still well enough, we will try to take them to the movies again this weekend as they really want to see Bolt. Other than that, we have no plans. Our dear friends Lina and Vince are reopening the Waterstone Café in Sanctuary Lakes
xxx
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