Blog: April 2010

30th April 2010

...... still no news :-( I will email Prof Hicks on Monday, as that will mark a 2 week delay, and see if we can get a date for a scan instead!

The children sort of enjoyed their long weekend at home ;-) They played soccer on Saturday and finally got their uniforms :-))) Very cute :-) That afternoon there was a big birthday party for 2 sisters - 1 from Rafael's class. The whole 2 classes were invited and it seems that everyone went - 40+ kids!! It was at an indoor gymnasium and they were kept very entertained. All of Rafael's friends were there and he loved it :-)

Our friend Manoel is installing light fittings throughout our house on the weekends and has enlisted Domingos as his assistant. Must be very funny to see, as Dom truly has NO idea ;-))) The children love having Tio Manoel here, but they got bored very quickly :-(

On Monday they went to see How to Train Your Dragon (must have been the last kids in the world to see it!!) They all loved it :-)

I arrived home on Wednesday morning, feeling very refreshed. I managed to catch up on a lot of sleep in LA :-) Unusual for me, as I don't sleep very well there due to the time zone difference :-(

Thursday was art day at school. I had a dentist appointment in the morning - ouch!

When I arrived at school, it was lunch time and I enjoyed watching the children playing with their friends. Gabriela was very cool and casual, you know "Hi Mum" and off she goes. Rafael however, saw me and came running up to give me a big cuddle :-))))) I helped Gabriela make a bird from a brown paper bag and Rafael and I did leaf rubbing, cut them out and attached them to pipe cleaners to make a tree. It was a fun day.

Next Thursday we have a clinic appointment with Dr Peter - seems like ages since we've seen him! Still waiting to get a blood slip from him for a specific blood serum test. This will show us which (if any) of Rafael's immunizations are up to date and which ones he will need to re-do. We are also waiting for a referral to the RCH dental clinic. Those dentists have much more experience with oncology patients and the effects chemo has on teeth growth.

Our fellow RCH buddy Charlize received some surprise news this week - her tumour cells are maturing and it seems from her scans that it is slowly killing itself!!! They are going to wait a few months now before scanning again. So Charlize is off treatment and even had her central line removed today - after 3 years of treatment!! We are so happy for them xxx

23rd April 2010

Still no news from Peter Mac :-( Prof Hicks did reply to my email asking about scans.

He said that if it will only be a few weeks delay, we can wait to do the SPECT/CT, but if it is to be longer, then we'll have to go back for a Gallium PET scan.

I wrote a huge post last week about how much my Mother's desertion is hurting me, but then I deleted it. Not sure if Rafael's blog is the place for me to pour out my pain and frustration??

It's been 8 weeks since she saw or spoke to the children :-( I just cannot imagine WHAT is going through her mind? Can she have so little care for even Rafa????

I saw on the Internet that she is selling her properties this weekend - news to me!!! I am so hurt by her and just can't see a way around this aweful situation that she has brought to our family :-(

We have enough to deal with already!!!

I'm off to LA tomorrow :-) It's a holiday weekend here, so Mingo will be home for 3 days :-) Soccer and a birthday party tomorrow for the children. On Sunday, Mingo will have his 2nd "lesson" at becoming an electrician's assistant ;-))

xxx

20th April 2010

Rafael was due to have a scan this Friday which would show what effect the treatment 8 weeks ago had. But since he's not having the treatment today, the scan has been delayed too :-(

We were really looking forward to seeing some results!!!

Prof Hicks is overseas and he wrote to us this morning saying that if the treatment is able to go ahead within the next few weeks, then we can wait to scan. If not, then Rafael will need to have a different type of scan that can be done at Peter Mac.

Let's hope those airports open soon and we get some news!!!!

19th April 2010

Hospital just called - the precious drug Rafael needs for his treatment tomorrow (Indium) is stuck on a tarmac in Holland :-(((( (Due to volcano disruption).

Treatment postponed until flights resume, however, it looks like up to a month wait to get a bed at Peter Mac :-((

I planned my whole roster around having this week off and the future blood tests!! Now all is "up in the air" literally ;-) 

I have begged them to let us know as early as possible when it might go ahead so that I can make some plans around work.

18th April 2010

We have all had a great weekend together. My last weekend of not working for a few :-(

Rafael REALLY enjoyed soccer again, but Gabriela was complaining after 1 1/2 hrs that she was tired ;-)

Their swimming class was cancelled, so I let them just play in the pool on their own :-)

Have to organise Rafa's stuff tomorrow for his hospital stay - 2 days of boredom ;-)

xxx

16th April 2010

Rafael had a great week back at school. He started his piano lessons and really enjoyed it :-)

Apparently, he punched a boy and then the boy punched him :-( Oh well, school yard "stuff"

His friend Tyler came over after school today for a play and they had SO much fun together :-) I am so happy too, to see him making friends of his own and just enjoying life, as only a 6 year old can ;-)

13th April 2010

Gabriela & Rafael really enjoyed their soccer (fookerball as Rafa calls it!) training :-) It is so good to see Rafa outside, running and running and really having a good time. Domingos is going to start coaching the under 6 team :-) We put Gabriela down into that group as she didn't enjoy the under 7's - with all of those "professional" boys - LOL

They also had another swimming lesson with Steve in the afternoon. Unfortunately the water was a bit too cold for Rafael and he was shivering before the 30 minutes were up :-( I got him to sit in the spa to try to warm up. Gabriela had a ball, she kept on playing :-)

I worked on Sunday and Domingos took them to a classmate of Rafa's birthdqay party. It was at 10 pin bowling. They all had a great time and even stayed later to play another game together.

School started again on Monday and Rafael was SO excited to see is new friends again, especially Tyler. Today was their 1st day in the winter school uniform - I can't wait to put the photos up - too cute!!!

Finally heard back from Dr Peter - Rafael's GFR (kidney function) has gone down a lot since last time :-( Could be he was not hydrated enough before the test?? But I did get him to drink lot's of water. We will do the test again in a few months.

Rafael will be admitted to Peter Mac again next Tuesday for his 2nd dose of Indium and will have scans again later in the week. Those scans will give us a much clearer pictiure of how effective the dose 8 weeks ago was, as it takes that long to start to show results on a scan. Prof Hicks is away, so we will see Dr Grace Kong this time.

I'm in Singapore now, feeling very tired and hungry -( Will spend the rest of the day relaxing and enjoying some quiet time ;-) xxx

8th April 2010

Gabriela woke up 1st on Easter morning and said "I know, the Easter bunny didn't come" :-(((

You see, usually he leaves a trail of eggs all the way from their bedroom, down the stairs and around the house. But this year, Gabriela & Rafael forgot to warn him about the new addition to our family - Bubble the cat!!! Bubbles kept trying to catch the bunny and when he couldn't, he was trying to roll the eggs all over the house!!

I asked her to go and wake up Rafael and she told him that the Easter bunny didn't come!!

They were both VERY exicted when they saw a taril of eggs downstairs - whew!!

The rest of day was spent relaxing, eating chocolate (Lela), taking Pipoca for a big walk to the beach to celebrate his birthday and not doing much at all :-)

Monday was a holiday here in Australia. I ended up working a few extra hours to pick up some of the hours I had to lose this roster. Simone called and invited us for a BBQ lunch. It was a beautiful sunny day, oh, what I would have given to be able to join them in a glass of wine ;-)

Last week of the holidays is flying by!! I tried to take up Rafael's school uniform pants so they'd fit him, but they are just HUGE :-( Size 6, so I had to go out and buy some size 4's :-(

Gabriela went to the dentist yesterday to have moulds, photos and x-rays taken. Tarcilio will use Gabriela as a "student" for hs studies to become an orthodontist. He feels that if we start to do something now, she won't need as much work later on. Her upper jaw is too small and all of the teeth are crowding in, with no room to push through :-(

I ask for you all please to visit, Imogen's blog and send her happy thoughts http://theholmesgang.blogspot.com/ Last weekend, nearly 6 year old Immie celebrated her 13th birthday with a huge Ben 10 party :-))) She is in a lot of pain now and her parents are awaiting her journey on Earth to finish :-((

Please also keep Ylaria in your thoughts and prayers - a miracle is needed http://www.caringbridge.org/visit/ylaria Last week her parents received the worst news possible from her doctors - she has maybe 8 weeks to live :-((( They are trying 1 more high dose chemo in the hope it can help in some way.

xxx

3^rd April 2010

We didn’t go away for the Easter break as we’d hoped L Just enjoying time at home and with friends J

On Friday we went to a local Italian restaurant that was donating all taking to the Royal Children’s Hospital Good Friday Appeal. We had a very nice lunch there, the children had margarita pizza – of course!! They got to play with their friend Gabriel and had lot’s of fun J Afterwards, Gabriel came to our house for a play.

This morning we went to see a show in the city – The Jungle Book. It was a 3 man show, lot’s of singing and laughing. Rafael seemed to enjoy it a lot more than Gabriela, it was probably a bit “young” for her?? Thanks Camp Quality for giving us the tickets xxx

In the afternoon we went to Stacey and Goce’s for a yummy bbq dinner. The children had a great time playing karaoke J Rafael fell on the trampoline and hit his top teeth L L

They are very excited about the Easter Bunny coming and also celebrating Pipoca’s birthday J J

Happy Easter to all xxx