Tuesday, 4 January 2011

Blog: January 2011

28th January 2011

We are back from our wonderful holiday in Torquay ;-))))))))))))

The house we rented was great. The owners have 3 dogs that stayed behind + our dog and Stacey's dog = lot's of dogs ;-)

After we arrived we took the dogs to the beach for a run. The weather was overcast and the children hadn't planned on swimming. Alas, as children like to do - they all got in with all of their clothes on!! and we didn't have any spares with us ;-)

The next day we were better prepared!! We bought Gabriela & Rafael boogie boards and they loved them, especially Gabriela. By the end of the trip, she was able to catch the waves and surf right in!!

We visited a wildlife park in Barwon Heads.

On Friday, we surprised the children with a trip to Queenscliff to board a boat. They were fitted with wet suits and wondering "what the?" :-))))

1st stop was at Pope's Chair, a rock formation in Port Phillip Bay that has a bird colony and lot's of sea life. We had to jump of the back of the boat, quite quickly. Unfortunately, Rafael wasn't given much warning and the shock of the freezing water really knocked him!!! He hated it!!! I didn't like it much either ;-) However, once you moved around for a couple of minutes, you got used to the water. But Rafa didn't move, he just clung to a life preserver and cried that he wanted to get out :-((

I managed to keep him with me until it was time to get back on the boat. 

Gabriela picked up snorkelling straight away!! One of the instructors stayed with her and Bella and they could both see all of the fish and coral :-)

I knew there would be no more getting Rafael in the water - hahaha But at least he was happy just to stay on the boat and he did enjoy the day!

Next stop was at a male seal colony in the Bay. I kept thinking about that cold water .... brrr! But was brave and jumped in anyway ;-) We got to swim right up to the platform where they live. Had to be careful one didn't jump on us.

The rest of the day was spent looking for dolphins, but we didn't see any :-((((

Gabriela and the girls were very brave, they eagerly joined in the boats other activities - sitting in the boom net, jumping into the water and holding onto a rope, hanging off the back of the boat and being towed along and even jumping off the roof!! No fear at all :-)))

The girls' friend from school came to stay over the weekend and she brought her boogie board too. That gave the girls even more practice and they became quite competent.

Rafael liked the idea, but he was just as happy to build sand castles on the beach ;-)

So, 10 days away, in the peace and quite - BLISS!! Stacey and I even managed to squeeze in a pedicure - woohoo!!

School starts on Monday, so I am busy trying to get everything ready, as well as finish all of the washing from the holiday ;-) 

Back to work next week for me too :-(

Rafael has an appointment with Dr Peter on Friday. I'll try to get his blood test done the day before to save time.


16th January 2011

Today we leave for our first family holiday together in over 4 years :-))) Even Pipoca (our dog) is coming!!

We have hired a house in Torquay (Victoria) with another family who have 3 children :-))) We are very excited - it's also our first ever holiday IN Australia - can you believe that ;-)

Thinking of our dear friends who are trying to find miracles for their children, NB Sucks :-((( xxx

12th January 2011

Rafael had a dose of MIBG injected on Tuesday and ad his scan today.

All went well, Jessie got the cannula in 1st go, with no bruising ;-)

I had to wake the children up early both days and they weren't happy! They have been sleeping in until 9:30 + these school holidays ;-)

Today we went in early to see our friends who were there getting a radiation consult for their son. I managed to have a good chat with the Dad :-( I feel helpless and just wish there was something I could do! Some magic cure I could suggest.

I just read this in a newspaper article about Ylaria, who lives in California " what some call the cruelest childhood disease on the face of the earth " - how true!!!!

The MIBG scan took a bit longer than expected, they started late, then something happened to the machine and we had to switch rooms. Mingo arrived about 11:30 but we had only just started. Rafael laid perfectly still the whole time and didn't even need tape on his toes this time :-))

We ran into our friends again as they headed off to start radiation. They said they would be meeting with Prof Hicks after that. I was happy to hear that. He only came back from holidays yesterday and is very busy.

After our scan, I saw Prof and the 1st thing I said to him was "Do you know our friends are trying to meet you?" He laughed and said "Yes, I'm waiting for them here" A bit of confusion over location, but I spoke to the Mum later and they did manage to meet him and are working on a plan to maybe do another dose of Indium next week :-))

We had a good chat with Prof Hicks. He didn't see overly impressed with the MIBG scan. ALL is GOOD, he could not see anything except a small bit in Rafael's pectoral area (same spot at the base of his skull he's had for ages) However, the quality and clarity of the images is nothing compared to the Gallium PET scans he's been having.

Based on what Rod saw (didn't see!!) he doesn't want us to come back in 3 months time as planned :-))))) Just wait and see ....

So, let's see what Dr Peter says next month. He may place us on a longer scanning schedule, i.e. 4 or 6 months??? How scary!!!!

Please pray for our little buddy

9th January 2011

All is well with Rafael at the moment, I have some things to write about his week, but I cannot :-( He will have an MIBG scan on Wednesday and I pray for stable to improved!!!

We are in too much shock to think about our own "scanxiety"

One of the families that we are very close to here in Melbourne have had to watch their son rapidly progress since New Year. I have been speaking to his Mum, and it's just so terrifying, how quickly this awful disease can just take over!!! He is in a lot of pain and it breaks my heart that children should have to suffer so :-( 

Getting the right combination of pain medicines is tricky, so in between, the children are in a LOT of pain !!!

One of the worst things about NB is that if a child relapses - there isn't any set treatment option or plan. It's really just about what options are available at the hospital you go to :-((( If they are in the USA, there are several phase 1 or 2 clinical trials, but here, we don't have those options.

It scares the cr*p out of me and also frustrates me to NO end!!!!

I'm sick of hearing "there's nothing else we can do" It's NOT good enough!!!!!!

Hoping and praying for a miracle xxxoooxxx

4th January 2011

Happy New Year to you all xxx

I came home from my trip on New Year's Day to find Rafael had a black eye :-(( Every neuroblastoma parents worst fear is a black eye - it's usually a tell tale sign of relapse!!

However, when you factor in the he and Dom were throwing a very soft ball at each other AND that Dom hit Rafa in the eye - it makes sense ;-)

The children had an ok time while I was away - they went to the movies to see Gulliver's Travels (they weren't overly excited). They made pizzas and cakes :-) On Friday it was 41C here - glad I missed it! Dom took them to the pool but it was closed - grrr!! They ended up driving to Williamstown to watch the fireworks across the river, then came home and stayed up until midnight :-)))

We had a busy weekend, a bbq at friend's on Saturday (I was so tired!) and then on Sunday we drove down to Frankston to visit Julia, Gaz and the girls. It was a great day, the children all loved each other and just played and played :-)) We had a great time too :-))

Dom goes back to work today after his Xmas break and I have some days off :-))


  1. Happy New Year to you all for 2011. Cheers, Alex

  2. Hi everybody.
    I wish you all a great 2011! Sorry if we missed each other when you came.
    All the best,
    Sergio Manhães