Saturday 4 April 2009

Photos: Rafael's 5th Birthday Party

Rafael had a wonderful day. He loved all of the dinosaurs and really enjoyed the pirate magician!!!
















































Blog: April 2009



28th April 2009

Dear Liz, Dear Phillip … my 2 “oldest” friends – HAPPY BIRTHDAY

It means a lot to me that after all these years, we are still in touch, and that you are both sharing Rafael’s journey with us xxx

Yeah – it’s finally been raining here in Melbourne :-) :-) However, it’s also freezing :-(

Domingos took Rafael to watch a soccer match on Sunday and the wind was literally blowing Rafa over!

Rafael went to kindy the last 2 days and enjoyed himself a lot. Not sure what happened today, but he got upset over something and started to cry L Not like him at all – usually he just throws a tantrum!


He helped me wash all of the dishes this afternoon – all by himself :-)





The other night we forgot to put a nappy on him. In the morning he told us AND --- he was dry :-) :-) Yeah. Could it mean that his kidneys are finally recovering??? He is having a kidney function test in a few weeks, so we’ll have an answer then. Not so dry this morning though :-(

Gabriela has gone off to the aquarium with her class today. Rafa is VERY jealous!!!

His hair is growing heaps, still can’t tell if it’s thicker, curlier, darker ????


24th April 2009


It looks like this might be the shortest blogging month we’ve had!!!

Life is so “normal” at the moment, it’s hard to think of things to write :-)

Gabriela went back to school on Monday and Rafael went back to kindy. From the minute he woke up on Monday he kept asking “what time am I going?” – sure was a LONG day for him as kindy didn’t start until 1:30 pm :-) He was very excited to see his friend Jensen.

Dom enjoyed his last 2 days of holidays, with some peace and quiet :-)

Patrice called on Wednesday morning to see if Rafael wanted to go to a park – there was NO hesitation for him, shoes were on, hat was on, come on Mum!!! He had a ball playing with Ryan and Daniel. Thanks guys xxx

The nurse came this morning to do Rafael’s dressing change and take some blood. He just takes it all in his stride now xxx

I’m off to Singapore now for about 18 hours of R&R – woohoo :-) :-) :-)


17th April 2009

I know, I hear you all .... too long between posts!!!

Easter was really awesome this year. The weather was perfect, mild sunny days, but alas, still no rain!

Rafael did THE funniest thing on Easter Sunday morning. Domingos and I were downstairs and we heard the pitter patter of his feet running upstairs. We ran upstairs quickly to stop him coming downstairs and seeing all of the eggs the Easter bunny had delivered before he woke up Lela. 

We couldn't find him at first. Then Dom called me to look in our bathroom - there was Rafael, standing inside the bath tub, trying to get the biggest plastic bucket before Lela did, to start collecting eggs!! I had heard them discussing it the day before, reminding each other that they need to get a bucket when they wake up. Rafael's memory is so good, it was the first thing he thought of :-)

Then we went to wake up Lela and at first she wasn't interested, but as soon as we reminded her it was Easter, she jumped out of bed. They both had a ball collecting lot's of little eggs from all over the house - far too many!!

I had to leave then to go to the airport to pick up my Uncle from the airport. I had been worried that the children would wake up after I had left, but thankfully they woke up very early. They have not seen Uncle Graham for about 1 1/2 years and probably don't remember him much, but they took to him straight away. All we kept hearing was "Uncle Graham", "Uncle Graham" and more "Uncle Graham" :-)

We were invited to a friends house for lunch, but on Saturday her son developed a fever and had tonsillitis We thought that with Rafa's low neutrophils, it wouldn't be a good idea to go there.

Our friends Patrice and Stuart called in on Sunday morning (they were bike riding off all of the future chocolate!) They convinced us to give the hospital a call and check with them.

Thankfully we did, because they told us that tonsillitis is not contagious and therefore we were able to go for lunch. OMG - the food!!! That was the 4th day for us of having wonderful friends cook yummy scrummy food   We are too spoilt. The children all enjoyed a big Easter egg hunt in the garden, Rafa couldn't hold them all!

On Monday, Domingos did what he had been promising Lela all school holidays - teach her to ride her bike without the training wheels. He thought it might take a few days for her to get used to it, but it only took about 1 hour  :-) :-) She had 1 fall and hurt her foot a little. Of course, then Rafael wanted to learn too! He learnt very quickly too, but is still very wobbly  :-) I have some great videos I'll post later.

During the week, Gabriela's friend Maddy came over for a play. She also happens to be another one of Rafael's "harem" - he loves her    

Uncle Graham stayed at our house on Thursday night as Dom had to take me to the hospital at 6 am on Friday. The children were "in heaven", they enjoyed having their great uncle visiting from Adelaide.

Surgery went well, I only had a local anesthetic and could hear and feel what they were doing :-( No pain though  :-( They wouldn't let me go until someone came to pick me up. We had an appointment at the Children's later in the morning, so I just hung around there, waiting, waiting, waiting ...

Things at the Children's seemed to work in reverse today - the finger prick blood tests took more than 40 minutes, dressing change in day oncology was about the same. We finished just after our 12:45 appointment time with Dr Peter and as we walked out, he was there with Rafa's file looking for us! I teased him a lot - "yeah, we finally kept you waiting"  :-) :-)

Rafael is doing VERY well. His blood counts have recovered already. Platelets were a little lower, neutrophils are back to 1.5. He has grown more :-) now 99 cm and 14.5 kilos. He has grown 5 cm's since his diagnosis in July 08. He hasn't put on much weight, but that's probably due to his growth. Most of his growing has been in the last 3 months, since he stopped chemo.

We now have a nice 3 week gap from hospitals  :-) Fingers and toes crossed!! His next treatment will be MIBG therapy on 7th May, he will have a MIBG scan the week after that, as well as another CT scan on the 15th. We won't see Dr Peter again until 22nd May where we will discuss what the scans show and "where to go" from there.

The more we talk to Peter, we get the feeling that high dose chemo and stem cell rescue is not on the agenda :-) :-) However, he is not ruling it out either. Either way, Rafael's stem cells can remain frozen for about 10 years!


11th April 2009

Sorry for the long gap between posts!

Rafael enjoyed his birthday party immensely :-) :-) He had such a blast and just loved the pirate :-) He is still talking about him pulling his eyeball out!!

The party was huge – way too many children and adults, way too much food and way too much mess the next day, but as I said, Rafael had a blast and that’s what we had hoped for :-)

I was lucky; I went to Hong Kong the next night and poor Dom had to spend the first 2 days of his holidays trying to clean the floors – smart move on my part!

We have already had a busy start to the Easter season. We drove nearly 2 hours in peak hour traffic that was just horrendous to have dinner with friends on Thursday night. It only took 40 minutes to get home – arghhhh!!!

Daniella and Andrea invited us for pasta and fish on Friday. That sounded wonderful and how could we resist? It turned into a marathon day as the pasta was just the entrĂ©e, then we had baked fish and vegetables. After sitting around for hours chatting, Dani decided to make wood fired cheese pizzas. OMG – the best pizza I have ever tasted in my life :-) :-) Thanks darling xxx

The nurse came in the morning to do Rafael’s dressing change and take some blood. I called the hospital in the evening and we were surprised to hear that his neutrophils have already dropped a lot after the radiation, they are 0.3 :-( His red blood count and platelets were lower too, but still within the normal range. He will be checked each week now.

We had free tickets to a show today, but decided it was too risky to take Rafael. Instead we spent the day at home, rearranging furniture while Rafael fought with his sister, yelled at his sister, banged her door and got sent to his bedroom :-) :-) Ah, just a normal day :-) :-)


3rd April 2009

Gosh, it's April already!! I have been writing Rafael's blog for 10 months now - who would have ever thought I'd be a blogger!!!

Rafael is doing very well :-)

He had a check up with Dr Peter at the "little kids" hospital today. It's so much nicer than Peter Mac. Not much to report. Peter is happy with the report from Peter Mac and he told us that the next round of MIBG terapy will be double the dose of radiation! They told us they would be increasing the dose, but not double!

Rafael was a super good boy during his dressing change. In the beginning, we used to have to hold him down while they did it. Now he sits on the chair by himself and "supervises" the nurses!

All is set for the HUGE T-Rex party tomorrow. Our house has been taken over by dinosaurs. Our friend Simone has outdone herself in making a wonderful centre piece table and decorations. Can't wait for you all to see the pics.

Rafael doesn't know, but we are also having a pirate magician :-)