Yes, Yes, I know – too long between updates :-) :-)
Domingos drove home from
straight after the game and stopped at Yass overnight. I was getting Rafael ready to go to kindergarten when Dom arrived home at :-) :-) No chance of Rafa going to kindy after that!!! Sydney
Gabriela lost her 2nd top tooth while Daddy was away.
By Tuesday, all was back to normal. Nothing exciting to report. Gabriela did a very special presentation for her class all about Laranja Mecanica and she took Daddy’s gold medal to class as well :-)
Friday was very busy with hospital appointments. Rafael had his E.N.T (ears) appointment which wasn’t too delayed (thanks to Renee xxx). Dr Peter was running a bit late, but not too much. When we walked in we ran into Fiona and Olivia, the little girl who was having her MIBG therapy at Peter Mac at the same time as Rafael. It was so nice to see them and be able to sit and chat. As it turned out, Olivia has started the new antibody trial that Peter had mentioned to me last week. There is also a 10 year old boy doing the trial at the same time. This means that every Friday for the next 2 years, they will be at the hospital to receive antibodies!!
Rafael was his usual charming self :-) Catherine who takes his blood is in love with him, Misty from Day Oncology is in love with him and Francesca in admin is in love with him :-) :-) :-) 3 women in 1 day all gushing over him, and he just looks and gives them a smile!!
All was set for Rafael’s 1st vaccination. They knew we were coming and it was already being defrosted in the lab. Still, it took a few hours to get it all done. Of course, Rafael wanted to watch them give the needle!! It went in under the skin on the inside of his upper arm. The vaccine was 0.2 ml, such a small amount!!! Let’s hope and pray that it is doing it’s job!!!
On Friday night, Gabriela & Rafael slept at Nanna’s house and had a great time. Gabriela went to a birthday party on Saturday and Rafael stayed with Nanna all day :-) Domingos and I had planned to go into the city for dinner, but a major accident had blocked all local roads, it would have taken us hours L Instead we went to a new bistro nearby. We even managed to go to the café for a peaceful breakfast in the morning :-)
The weather was so lovely, we held an impromptu BBQ. Such a nice night, spent with great friends :-) :-) The children all had a blast!!
Domingos’ 2 weeks in
caught up with him on Sunday and he could barely get out of bed all day :-) Sydney
Gabriela lost her 3rd top tooth on Saturday night – she looks so cute J She is quite proud as now she can whistle!
Today she was not feeling well before school, and then vomited all over herself just before she left :-( Therefore, she stayed home with me and I tried to keep her and Rafael apart.
Rafael was so excited to go to kindy today as Monday is now the day they visit the new library :-) :-) He loved it :-)
18th October 2009
We are the Champions!!!!!
Domingos has been in Sydney the last 11 days with his football team from Brasil - Laranja Mecanica (Clockwork Orange), playing in the 40+ competitive division of the World Master's Games. Most of the team have been playing together since 1989, next month they will celebrate 20 years!
This year's Games had a record of more than 24,000 competitors!!! (That's more than the 2000 Sydney Olympics!)
Today they won the Grand Final 4 x 2 :-))))
Unfortunately, Domingos was knocked out by a hit to the head and he missed the last 10 minutes of their victory!!!!!!!!!
He has seen a doctor and has been cleared of any serious impairment ;-))) (Well, nothing more than he already had!)
Also, Laranja's 30+ team also won !!!!
How awesome is that???
Laranja!!! Laranja!!! Laranja!!! Go amigos!!! 20 years of playing together are paying off in Sydney, Australia!!! Boa sorte :-))))))))))))))))) xxxxxxxxxxxxxxxx
16th October 2009
Rafael had a fantastic trip to
I arrived on Tuesday about the same time the whole team was arriving back at their hotel after their winning game :-) They all had to be up at to get to the stadium by . Rafael was very tired, so tired in fact that he fell asleep on top of one of his Tia’s half way through the game and did not wake up until they were already on the train heading home!
We caught up with Dom’s colleagues from ASIC for a quick coffee, then headed of to my hotel to drop off our bags.
We drove to
and went for a walk along the shore. It was very windy. Rafael was obsessed to find his “cousins”!!! Thankfully we found them at a bar along the beach front J Rafael was very happy and we were too – sitting in the sun, drinking beer :-) :-) Bondi Beach
A group of us went to
Chinatown for dinner and we didn’t get to bed until – a LONG day for Rafa :-)
I had to leave at for my course. Mingo took Rafael back to his hotel and they spent the day relaxing and watching tv before heading out to the stadium for their next game. As soon as it finished, Mingo drove Rafael straight to the airport to meet me. We managed to get on an earlier flight and Rafael stayed awake all the way, enjoying his business class seat and pressing all the buttons! He did fall asleep in the car on the way home :-)
It was hard getting him to wake up on Thursday to go to the hospital!
Rafael was very proud to tell everyone that he went to
, on a plane, and that no one went with him :-) :-) Sydney
Our meeting with Dr Peter went well. Plan is still the same, but the order has been changed!
They held a multi disciplinary meeting last week to discuss Rafa’s case with all the doctors involved. Prof Hicks from Peter Mac couldn’t go, but he sent his colleague Dr Grace Kong in his place.
They reviewed the gallium PET scan together. Rafael’s bone marrow was lit up on the scan, as expected. However, Grace was not able to convince Dr Peter that what they were seeing was truly neuroblastoma or if it was bone marrow regeneration and fatty areas. I got the feeling that Dr Peter will not be happy about that scan’s results until he can speak to Prof Hicks personally.
We knew from the last meeting that there were not enough lit up areas to be able to use radionuclide therapy. Peter Mac are still suggesting using MIBG again, with another radiation added.
Prof Heloury explained to Dr Peter that the timing of the surgery versus administration of the tumour vaccine was not an issue. Dr Peter said that if surgery occurred now, and if there were any complications, it would delay being able to give the vaccine. The want to give the vaccine asap to start attacking the NB in Rafa's bone marrow.
Therefore, Rafael will start having his vaccine’s first. So far they have enough for 3 doses, maybe 4 and it is given every 2 weeks.
This part I didn’t quite understand – Firstly Rafael needed to have a Tetanus & Diphtheria vaccine. They use data from how Rafael’s blood responds to this vaccine as a gauge to how the tumour vaccine is working???? Will have to ask Dr Peter about that again!
Dr Peter also told me about another new trial that has opened up that Rafael will be eligible for. He can start that one when he finishes the vaccine. I’m researching that one too.
I had to take Rafael back in this morning so that he could have the tetanus injection. He wasn’t too happy about that :-( But he was very brave and it was over so quickly! We had to wait 15 minutes to make sure there was no reaction.
Starting next Friday, he will have the tumour vaccine and we’ll have to wait for 1 hour afterwards.
We made it to Gabriela’s school’s swimming lessons in time for Rafael to watch. However, he wasn’t that interested :-( We took Lela home with us instead of having to drive all the way back to her school to pick her up!
At one stage in the car, I heard Gabriela ask Rafa “what’s the matter” and he replied (all sad) “I miss Daddy”. Gabriela promptly replied “well you got to go to
and you saw Daddy and I haven’t seen him at all” :-( :-( :-( Sydney
Speaking of Daddy – Laranja won their quarter and semi final today and will now play in the Grand final on Sunday!!!! Woohoo :-) :-)
Laranja Mecanica have already won their first 2 games at the world Masters Games in Sydney (4 x 0 and 5 x 0) :-) :-) :-) They are playing in the 40+ Competitive division. Viva Laranja!!!!
Rafael was so sad to see all of his new Uncles leave :-(
Domingos and I “ummed and arghed” about trying to send Rafael up to
to watch some of the games. Sydney
I am going to
tomorrow anyway for a training course on Wednesday. Sydney
So, our brave little 5 ½ year old went on a plane ALL by himself today to meet his “cousins”!!!!!!!!!!!!!! :-) :-) :-) He didn’t cry, he wasn’t anxious, he was just a little shy :-)
By the time the flight arrived in
, in typical Rafael fashion, he’d managed to charm the flight attendants and they didn’t want to hand him over to Mingo!!! :-) :-) :-) The “harem” just continues to grow!!! Sydney
I don’t know much about the flight as I haven’t been able to talk to him – he’s having TOO much fun!!! And you know what? HE DESERVES IT!!!!!!!!!!!!!!!!!!! Go Rafa xxx
So far they have been to the Opera House, been on a ferry ride and visited the Aquarium :-)
Laranja’s next game is at tomorrow, so they have to be up very early. Rafael will join the cheer squad :-) :-) :-)
8th October 2009
We have had an extremely busy week here!!
On Sunday morning Domingos took Gabriela and Rafael to see the movie "Up". They alI loved it. I was called out for another
trip and I arrived home on Tuesday morning … and haven’t stopped yet!! Singapore
After 4 years of planning, some of Domingos’ soccer team from Brasil arrived in
on Monday afternoon. There were 12 players and 5 wives in total. The rest have gone straight to Melbourne where they will compete in the World Master’s Games 2009. They will play in the 40+ this time – hey – we are getting old!! Sydney
Rafael had his appointment at the hospital on Monday morning for more blood to be taken. All went smoothly and they managed to get to the airport in time to meet the team. At first Rafa was a little hesitant – if you can imagine – 17 people arriving who he doesn’t remember and all speaking Portuguese to him!!
Mingo went to pick up Gabriela after school and took her back to the city to meet her Tio’s e Tia’s :-) :-) They went for a tram ride around the city and then all stopped at a pub for dinner! By this time, Gabriela and Rafael were already in love with their new uncles and aunts, but especially 2 of them – the “Greeks” :-) :-) :-)
When I got in from
, I had no time to rest as Domingos had invited everyone to our house for a party that day and I had to buy food!! Thankfully Costco is now open here and within an hour I had bought all that was needed :-) Back home for a quick 1 hour power nap. Singapore
1 taxi run and 2 car run’s to the local train station and we had everyone here and settled to party by !! After much eating, drinking and dancing, they left about :-) :-) We all had such a great time! Typical
weather prevailed – sunshine – rain – sunshine – rain!!! Melbourne
Gabriela and Rafael became even more enamoured with their Tio’s. They had SO much fun playing and dancing. Rafael added to his “harem” – of course!! ;-) One of the guys is called “Greggo” (the Greek), but that was a bit difficult for Gabriela & Rafael to get their tongue around. So one of the other Tio’s suggested they call him “Uncle Freak” instead! Well, it has stuck now :-) :-)
Our house looked like a bomb had hit it on Wednesday morning, but we were in slow motion and too tired to clean it up. We received a phone call at from the guys saying they were already on a train heading out to Ballarat to visit a wildlife park their. So we ran around, got ready and drove out to meet them. We all arrived about the same time, but just missed the tour. Didn’t matter anyway ….. It was freezing and raining a lot! As soon as you get into the park, kangaroos come from every direction to try to get food. They have special bags for sale at the entrance, and of course, the kangaroos lay in wait! A few had joeys in their pouches – so cute!!
We had a great time after the rain eased, Rafael was in heaven after he saw the crocodiles, 1 of them was huge! The koalas were sleeping – surprise! The Tassie Devil ran away when he saw all of us coming – don’t blame him!
We finished just after 1 and agreed to meet at a Greek restaurant in the city at that night. We drove back and made it in time to pick up Gabriela, get home, showered and changed and then head back into the city!!
We arrived late for dinner, but in typical Brasilian fashion, everyone else arrived really late!!!! Poor Rafa was getting quite anxious, asking “where are the boys?” over and over. I think Greggo and his brother Konstakis were the last to arrive, close to and that was it! Rafael was off, sitting with them and playing, having a great time :-) :-) We had to leave soon as Domingos was leaving at to drive to
. Gabriela and Rafael both fell asleep in the car after their 3 late nights :-) Sydney
Mingo headed off just before , picked up Marcao in the city and they drove all day, arriving about 3pm. They said it was a good and easy drive :-)
I didn’t send Gabriela to school, poor little princess – she had black rings under her eyes!!
Oh, by the way, her 1st top tooth came out on Monday night :-) Well, Daddy pulled it out as she asked because it was just hanging!
Rafael had his 1st day back at kindy today after the holidays and his busy week of socialising!!!
All of us are so tired; house is still a mess ….. But what a fantastic few days we had :-) :-) memórias maravilhosas – wonderful memories :-) :-)
Now all of the action is happening in
and we are seriously thinking of sending Rafael up there to join his Daddy! All of the Tia’s said they could help look after Rafael while Mingo is playing in the games. Let’s see what happens …. Sydney
Boa sorte Laranja Mecanica !!!!!!!!!!!!!!!!!!!!!!!!!!!!!
1st October 2009
My first week of stand by went well – couldn’t have asked for better :-) I got sent to
on Monday afternoon and was home early on Wednesday morning. Mingo was home to look after the children and they all went to try their hand at golf!!! Would have loved to have seen that :-) :-) Singapore
The trip ensured that I had Thursday off, for our meeting with Peter – yah!!
We took the children to see “Aliens in the Attic”, they ( & we) laughed a lot :-)
So, to the all important meeting ….. hhhmm, we still have to wait for more answers!
Rafael’s red cell and platelet counts are finally recovering, however he is neutropenic again :-( - that is, he has less than 1.5 neutrophils, so we have to be careful he doesn’t “catch” anything.
They did not get enough blood last time to create the 3rd vaccine, so now Rafael is having a needle each day to boost his white blood cells (and that will help the neutrophils too). On Monday he will go back for another 80 mls to be taken :-( Hopefully that’s the last time.
Dr Peter is very keen to get the vaccine started very soon. As Rafael is clinically well and his immune system is stronger, now would be a good time to start.
I’m sure I’ve posted this before, but will add again – this is the basic info about the actual tumour vaccine trial being designed and used here at the RCH, Melbourne. “take the tumour RNA, and take out a fraction of the immune cells called dendritic cells and stimulate the 2 together in the lab. Activated dendritic cells then recruit T cells to attack what the dendritic cells have labeled as being “abnormal” or foreign – and part of the T cells that they recruit are NK cells. So the theory is that the patient’s own dendritic cells are primed against the tumour, and when they’re given back in as a vaccine, they will stimulate the NK cells to attack residual neuroblastoma”
Dr Peter didn’t know that Rafael had a Gallium scan last week. He got Peter Mac to fax over the results, but he could not see the images. The report was a bit vague, but it seems to be that there was not enough areas lit up to use the radionuclide therapy. However, the Dr suggested that maybe MIBG + 1 other therapy could be used together to attack the NB in Rafa’s bone marrow.
Dr Peter wasn’t overly convinced by it and has called ANOTHER multi disciplinary meeting for all involved to discuss the situation. Prof. Heloury will attend as well.
Professor Hicks is away until Monday, the meeting will be either this Wednesday or the following and we meet Dr Peter again on Thursday 15th.
Ho de hum …… another 2 weeks to wait!!! The concern for us is that Neuroblastoma doesn’t like to wait!!!!