Blog: November 2010

25th November 2010

Gabriela and Rafael went to Cops and Kid's Camp for 4 days last weekend in Ballarat. They stayed at Sovereign Hill and had a fun and busy time!

They ..... went to a farm, for motor bike rides, limo rides, tram rides, light plane rides, double decker disco bus rides. They went swimming, to a bbq at the fire station, made plaster moulds and painted them. Visited Sovereign Hill and I think (?) Gabriela might have gone to see Blood on the Southern Cross :-))

When I picked them up on Monday afternoon they were very hot and tired.

Rafael came home with a 39C temp :-( I didn't send him to school on Tuesday. At home, he turned to me and asked "Mummy, when am I going to stop cancer?" :-((( Nearly broke my heart! He knows he has neuroblastoma, but I don't think he knows it's cancer.

The word cancer doesn't have much meaning to young children, not like us adults!!

But I guess he's getting to an age now where he is understanding a lot more about what goes on around him :-((

He had a 39.5C temp that night and I really thought he wouldn't go to school on Wednesday either, but he was fine in the morning :-))

Our local paper has a story about Rafael this week (24th Nov) - look on page 9

http://pointcookbanner.newspaperdirect.com/epaper/viewer.aspx

A local family are holding a market night at their house to raise $ for cancer research and somehow, someone connected Rafael to the paper. 

Off to see Dr Peter in the morning, another missed day of school for Rafa :-(( There are only 9 days left of school for them - where has the year gone???

xxx

15th November 2010

Where has this month gone????

Last Monday, Gabriela played Jingle Bells at her school assembly :-) She did a wonderful job xxx

That night, Rafael had a fever of 39.2C :-(( We gave him some panadol and played it by ear.

When he woke up on Tuesday, he was determined NOT to go to school sport's day! He said "I can't run, I can't jump, I just don't want to go"!!!

I was going anyway, so we convinced him to go, saying that I would be there if he wasn't feeling well.

He LOVED it!! he had so much fun! Running races, sack races, long jump - he tried them all. It was a hot day and lot's of the children didn't have their water bottles. I was glad I was there ;-) I took lot's of photos too :-)

When we got in the car to drive home, Rafael said " That was SO much fun" :-))))

We had to be up nice and early on Wednesday to be at RCH by 9:30 for Rafael's CT scan.

As usual, all didn't go smoothly today ;-) They didn't have the paperwork, wouldn't start. 

At 10am I convinced them that I'd go looking for the paperwork if they gave me the contrast for Rafael to start drinking along the way. He has to drink 1/4 of the mixture every 15 minutes. However, the lady only put a little cordial with the contrast so it tasted really revolting and Rafael vomited after he'd drank more than 3/4!! 

The 1st canula blew the vein :-( They did manage to get enough blood out first for the blood test :-)

We finally got back down to CT at 11:20 am and then they forgot about so we had to wait and wait - arghh!! 

Throughout it all, Rafael was his usual, beautiful self, even if his tummy was really grumbling :-)) 

We tried very hard to catch up with a fellow NB family whilst there, but we couldn't :-((( We ran to get Rafael some McDonald's and by 1pm, were in the car and off to Werribee for his hearing appointment!

His right ear has gotten a bit worse - again :-(( However, the lady seemed to think it was because both of his ears are a little blocked ;-) We go back in January to check again.

Dr Peter emailed us on Thursday morning with the results :

"Dear Tash and Dom - I've had a look at the scans this morning fairly closely and I can't see anything that looks different from before - in fact, I think the areas of retroperitoneal disease with calcification that we've seen before were a bit smaller, if anything.  I'll await the formal report but that's my own opinion. The liver function tests are now back to normal.  This is in keeping with a viral infection which is resolving.  Nothing new either from the stools - but if anything else comes up I'll let you know.

I'm pleased with this, obviously - and I'll see you in a couple of weeks as planned.

Peter"

As you can imagine, that was a HUGE relief!!!!!!!!

My work is crazy at the moment. I am finished off my 8 weeks of standby, however, there isn't any work for me to do as I only fly on the A380's and they are still ALL grounded pending the engine investigations ;-) I am enjoying each extra night at home :-)))))

Peter Mac called on Friday to book Rafael in for an MIBG scan on 11th/12th of Jan. He hasn't had one of those scans for a long time, so it will be interesting to see it's perspective of his disease burden.

Thanks for you patience this month! Sorry for the slow updates! Trying to upload phot's now too

xxx

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I am SO sorry that I haven't updated the blog this month!!

I was sent away for 6 days and since coming back, have just been flat out.

All is well. Rafael had a CT scan yesterday to look at his pancreas. Also did a blood test while we were there to check his liver function again.

Their school had sport's day on Tuesday. Rafael didn't want to go at first. I went along and took lot's of pics ;-)

Rafael LOVED it, he said it was so much fun :-)

Will give a proper update later today xxx