Wednesday, 4 November 2009

Blog: November 2009

30th November 2009

Domingos had a very busy weekend with the children while I finish birthday and Xmas shopping :-)

They had 2 parties on Saturday, the first was the Very Special Kids Xmas party. I have to upload the photos of Rafael with his hair painted green and turned into a Mohawk!! They loved the animal farm and didn't want to leave ;-) The 2nd party was our friend Renee's birthday. Everyone had a great day :-)

On Sunday Mingo decided to have a baking day. His first cake didn't turn out very well, so he made another one and then also made a creme caramel – yummy!!

Rafael had to be at the hospital by 9am today to start drinking the “stuff” one has for a CT scan. He also had to go to Day Oncology to have a cannula inserted inside his elbow as well as having about 40 mls of blood taken to be used to test his immune systems response to the tumour vaccine.

Mingo took him in as I was still on my way home from LA, and he said that all went very well and that Rafael only got a little fussy as he watched to needle for the cannula go in. He lay VERY still for his CT and it was over very quickly. In fact, I arrived home about 2 minutes before them :-)

Rafael even went off to kindy in the afternoon. That was great as he's going to miss his other 2 days this week due to hospital visits :-( He only has 3 weeks left on kindergarten!

27th November 2009

Received a few phone calls yesterday afternoon from Dr Peter’s nurse.

CT is booked for 10:30 am on Monday, but Rafael needs to be there by 9 am to start drinking the yucky stuff as well as having a cannula inserted so that they can do CT with contrast.
He also needs some special blood tests as part of his vaccine trial.

Then she called back again to say that Dr Peter has also requested another bone marrow aspirate :-( Those are the ones that Rafael wakes up from very distressed and aggressive L Last time the anaesthetist read his history and listened to our concerns and Rafa woke up fine :-) Dom said straight away that he will come with me :-) I just can’t go through those on my own anymore :-(

This is the one test that we really fear hearing the results of :-( :-(

Still no time or date for the meeting with the surgeon!!

I’m off to LA today and hope to catch up with my dear friend who will be spending the day “down the road” at Disneyland on the busiest day of the year! Crazy!! And NO – I won’t be setting a foot inside the place – too many people for me ;-)
24th November 2009

OK ….. I did cry – just a bit!!! They were so excited to go off to Camp :-) Gabriela was in the 1st bus and as it pulled away, I had a few tears and then Rafa’s bus (the police bus) pulled out and the tears flowed again :-( :-(

On Friday night we had the parent’s dinner for Gabriela’s school. We went to a lovely restaurant in Williamstown and had a great night out :-) :-)

Our sleep in on Saturday was interrupted very early at 8:30am by the tiler – grr!!! As it turned out, he was 2 tiles short of being able to finish the shower base – grr!! So now we are 2 weeks without our shower and still waiting for the extra tiles to be delivered :-(

We stayed around the house most of the weekend – it was SO quiet :-) :-) Bought some news plants and re-potted others.

The weather turned on Saturday afternoon and it rained and rained and rained!! Poor Lela and Rafa – Ballarat had more rain than Melbourne!

I went to the movies for a girl’s night out on Sunday and for pizza afterwards :-)

The children were due back in Melbourne at 4:30 pm on Monday. I was feeling a bit “lost” by that time, getting anxious to go and pick them up :-(

Lela’s bus arrived 1st and surprise, surprise – she actually looked happy to see us and came running up to me for a big hug :-) :-) Of course, I burst into tears ;-( As Rafa’s bus pulled up, we could see him waving out the window at us :-) He also ran to give me a big hug and of course, I cried again! Rafa was very happy to see me, but what he really wanted was his Daddy :-) :-)

They both had a fabulous time and kept talking about all of the things they did. Their leaders told us that the rain was so bad on Sunday that they did not even attempt to walk through Sovereign Hill. Imagine all of that mud??

This year they went to a farm, a BBQ hosted by the CFA, police car rides, double decker disco bus rides (they LOVED that), airplane rides, swimming (Lela only) , a play centre, McDonald’s, watched an Irish dancing show and ate cornflakes, cornflakes and cornflakes!!! They both made Xmas cards, and both of them are for Daddy!!!

They were very hyper all night and it was hard to get them into bed :-)

We managed to wake them up bright and early for school and kindy :-) When I went to pick up Rafael from kindy, his teacher said that he was talking about the camp all day :-) and that he even stood up in front of the class and told his friends what he had done :-)

I was waiting all afternoon for a phone call from Dr Peter. He was meeting with Prof Heloury (surgeon) in the morning. There was no call before I went to bed, but there was an email. As I half expected, Prof. wants another CT scan first. It’s been nearly 3 months since the last one was done and in “Neuroblastoma land” that is the typical time frame for a new one.

Prof also wants to meet with us again to go through the pros and cons in more detail.

Dr Peter has proposed that we all have this meeting together, sometime early next week.

Therefore, we are waiting again, to get a booking for the CT, and a time for our appointment :-(

ps: I don’t know what went wrong at the hospital last Thursday, but I seriously nearly walked out and told them they could throw Rafa’s vaccine in the bin!! Our doctor appt was 2 ½ delayed (no reason) and once in, it took her 15 minutes to check Rafa. After that, THEN the lab started to defrost the vaccine!!! They knew we were coming and what time, but to have to wait even more for the defrosting just “sent me over”. I was very cross and grumpy with all of the staff :-( :-( Not like me!!
20th November 2009

It's 5:30 am and I'll have to start waking the children up soon - they are off to Cops & Kids camp today!!!! Are they excited??? Just a little! OK, that's an understatement indeed - they can't wait and don't stop talking about it :-)

If you remember, Gabriela went last year but Rafael was too young and too sick. Well this year, they are both going, for 4 days - wah!! I'm sure I'm going to cry :-(

I will update again later today. Had a nightmare day at the hospital yesterday. Waited 4 1/2 hours before they even started doing anything - grrrrr!! I still need to calm down before I post THAT story. All is well though, Rafa had his 3rd vaccination - no problems xxx

15th November 2009

Another normal week for us :-) :-)

Rafael's kindy class went on a walking tour to the local fruit & veg shop last Tuesday. They got to taste lots of fruit, but Rafa told me he wouldn't try the pineapple :-) When they got back to class, they made fruit salad with their purchases :-)

Time is passing so quickly now, less than 6 weeks 'till Christmas!! We haven't made any plans yet as I won't receive my new roster until the week before. We are hoping to be able to go away for a few days.

Dr Peter has gone away for a week and we won't see him at this weeks visit. I have emailed him and asked him to try to get Rafael's surgery booked in as early as possible. We hope that it can be done before Christmas so that he has lot's of time to recover before school starts on Feb. 1st.

We have also asked that his central line be removed as he is not requiring chemo or blood products anymore. If he were to go onto a new trial next year, we will push for him to have a port inserted instead. At least with one of those he can have a bath and go swimming.

Gabriela and Rafael are both off to Cops & Kids camp with Challenge next weekend :-) They are so excited!!! We will probably drive up for 1 of the days to see them. Even if Gabriela is grumpy to see us, at least we know Rafa will be happy ;-)

We all went to a 1st birthday party on Saturday. The heat really knocked me, I'm not used to being outside in the sun anymore (getting old!). The children had a great time playing with their friends.

Today we were meant to catch up with Dom's colleague from Sydney and then head of to the Ulysses motor bike club for a day of riding and fun. Our 1st plan failed as our friend was running late and we wouldn't have been able to spend much time with her. As we were about to leave, I checked the address of the park on the Net. I was shocked to discover that it wasn't at Cardinia Park (Geelong), it was Cardinia Reservoir Park (Narre Warren) - hours away :-(((( By that time, we had left it too late to drive so far for a day of fun :-( Oh well ... next year!

Instead we went to the cafe for brunch and in the afternoon we went for a big bike ride around Sanctuary Lakes and stopped at the little beach for a play in the sand :-)

6th November 2009

All went well with the 2nd vaccination. Unfortunately, Rafael's Dr was away as he had some chest pains in the morning and had to go to the Dr himself!

Took more than 1 hour just to see another doctor :-(

Rafael squeezed my hand very hard while the needle was going in and he yelled a bit, but it was over very quickly ;-)

Gabriela had her piano recital at school on Thursday night - she was so cute and performed beautifully xxx

3rd November 2009

Rafael had his 1st day of Prep transition last Thursday :-) :-) It only went for 45 minutes, he was a little shy at first to get in the line with the other children and I stood with him until the line moved – then he was off :-) :-)
I went to LA on Friday, so Dom was ‘in charge” :-) :-)

They had 2 parties on Saturday which kept them all busy. 1st was a disco party, but Rafa was the only boy and he didn’t want to get up and dance, even though he loves to dance!!

Afterwards they went to a Halloween party and went trick or treating, they seemed to enjoy that too :-)

On Sunday they all went for lunch at a friend’s house and afterwards Dom dropped them at Nanna’s for a sleepover :-) I don’t think much sleep happened :-)

I arrived home on Monday morning. Gabriela did not have school but Rafa still went to kindy.
Today was a holiday for the Melbourne Cup (horse race); Rafael pulled out his stuffed horse and rode it as hard as the real jockeys :-)

We are off to the hospital again on Friday for 2nd vaccination.

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