Blog: May 2009

29th May 2009

I have been away since last Sunday on an 8 day LAX trip. It's the longest trip I've done since before the children were born. I am still in LAX, but thought I'd better add an entry as by the time I get home, it'll be almost June - 1 year of blogging!!

Rafael had a fun start to the week. Dom took then both for a very big bike ride and then to the cafe. They are expert riders now  

On Monday, his kindergarten called my Mum to come and pick him up as he was complaining of a lot of pain in his feet. He didn't have a temperature. Dom called the hospital and they suggested taking him to a GP instead of taking him there. With all of these swine flu outbreaks, who wants to go near a hospital or GP??? Of course, I was away, on the other side of the world, freakin' out, wondering what could be wrong?? It seems he has a wart on 1 foot and that was treated with dry ice, as for the other foot - no idea what could be causing the pain. The Dr decided to take the "wait and see" approach.

Rafael spent the rest of the week back in kindy, doing his normal stuff, with no more pain (I think?)

Gabriela had a sleep over at her friends on Thursday night. Not sure if she left her bag there or at school, but she didn't bring it home ... and that means ..... NO Ted-Ted to sleep with

I only managed to talk to them on Skype last night for the first time all week. They were more interested in their new ski clothes and what food they were going to eat for dinner - too cute!

The nurse came to our house on Friday to do Rafa's dressing change and she didn't know how to do a sandwich type dressing, so Dom had to "teach" her

22nd May 2009

We had a pleasant trip to the hospital today; Rafael enjoyed catching up with lots of his “harem” girls!! Everyone was commenting on how much his hair has grown :-)

The meeting with Dr Peter was pretty brief (as expected). Rafael’s blood counts have dropped, but are still in the lower part of the normal range. His urea and creatinine are NORMAL :-) :-) The best news for Rafa – he doesn’t have to drink magnesium each day any more!!! Yeah – we came home and triumphantly threw the bottle in the bin :-)

I managed to trade off a trip I had in June for one leaving this Sunday. The catch is that it’s an 8 day LAX trip (7 nights away)!! I have not been on a trip that long since 2000!! It’s going to be a shock to the old system; I had to pack so much stuff!!! Going to be a shock for Dom too, he will have to become very organised in the mornings ;-))) We’ll try to use Skype as much as possible and I’m sure the time will pass very quickly J Oh, and, the memorial Day sales will still be on :-) :-) - read – 1 happy Tash :-) :-)

We went for a lovely dinner at the Waterstone Café and ran into our friends Helen & Richard with their children. All 4 children spent the night outside playing – brrr – too cold! How is it that children just don’t seem to feel the cold???

20th May 2009

Except for a huge double bruise and Rafa’s forehead, he is VERY well :-)

He went back to kindy on Monday and came home very excited telling me that the next day they can do show and tell :-) Most children would love to take a toy of some sort, but all Rafa wanted to take was a paper airplane Daddy had helped him make :-)

I had a weird experience on Monday! I had to do my ½ yearly emergency procedures exams and training. All quite routine, except when I got there at 7:15 am – I was the only 1 there! I started worrying that I had the date wrong, or it had been cancelled. But no, all was on, just the instructor and I – too weird! I mean, there were not even any other classes being run, so we had the whole training centre too ourselves – very quiet and spooky.

Last Saturday night we had a great night with some friends coming over for a Mexican feast as well as lots of margaritas :-) :-) The children all played well together. In fact, they did something very strange??? They decided (I don’t know why), to re-sort all of Gabriela’s clothes draws!! When I went upstairs to see why they were so quiet, there they were, folding socks and knickers, moving dresses around etc – too cute :-) :-) Those girls can come to our house EVERY day! In fact, next time, I’ll point them in the direction of my wardrobe first ;-))

We had a big surprise for them on Sunday morning and it was a bit hard to wake them up early after their late Saturday night. Through Camp Quality, they went to an Aussie Rules Football clinic, run by their favourite team – the Western Bulldogs J

They loved the idea of wearing their footy clothes. They were split up into age groups and ran off to do some warm ups. Gabriela was the first to fall (and cry) and it took a bit of coaxing to get her to rejoin her group. In the end, she just joined Rafa’s group, which was a better size for her anyway. The next one to fall was Rafa, and he fell well. A big boy bowled him over while they were running. So that was it for Rafa too, he didn’t want to do anymore.

Gabriela kicked a goal!!!! I think she really surprised herself  xxx By the time they moved on to the next activities, they were both happy to participate. Rafael really enjoyed the tour through the training rooms and even managed to sit in the captain’s seat in the war room :-)

They were given a bag with a football, poster and cap. They could get those autographed by the players there. Both decided to get their posters signed J A few sausage sizzles later and it was time to head off.  

Peter Mac called to change the date of Rafa’s next treatment to 2^nd July. We are meeting Dr Peter this week, but I don’t imagine he’ll have much to say as we still have to wait a long time to get the results of these treatments.

 

12th May 2009

Rafael was discharged on Saturday morning. He was very happy to go home and so was Dom, they were both so bored there, being stuck in the room for 48 hours :-( Even the toys and movies didn’t keep Rafa occupied for too long.

We had a quiet, pleasant Mother’s Day at home. Rafael cannot be around other people for the next week and therefore we couldn’t go out anywhere. The weather was lovely and we had a bbq lunch. In the afternoon I had a nap and Dom took the children bike riding :-) :-)

Rafael had his MIBG scan today at Peter Mac. From leaving home to return took 5 hours!!! Grrrr!! I hate waiting, waiting, waiting around hospitals.

The scan showed that there is a lot of MIBG uptake and that the radiation is in the correct area. There were no surprises – no other spots lit up – YEAH!!!

They have booked Rafael for his 3^rd and final dose on 25^th June. That could change if his blood counts drop too much this time around.

So, back to “normal” for us the next few weeks. We did have scans booked this Friday at RCH, but due to the treatment Rafa just had, it is not advisable to have them so soon.

We still have a meeting with Peter next Friday.

 

8th May 2009

Rafael is doing ok, the boredom is driving him and Dom crazy!!

They did not have a room available until nearly 1pm and didn’t start the treatment until after 2pm. We ended up going for a walk to the city to get some lunch.

This morning Rafael was complaining of pain in his stomach. That is one of the side effects. Sort of good, as it means the radiation is attacking the tumour, but not good for poor Rafa to feel pain :-(

Dom asked for some Panadol, but being the “big kids hospital” – they only had tablet form. It took a long time for the pharmacy to get some liquid. Dom was tempted to walk to Collins St to get his own!  By the time they gave it to Rafael, he said he didn’t need it anymore, but he was a good boy and took it anyway.

This afternoon his level was still too high – 26 (whatever’s). It has to be below 12 to go home. Therefore, he is staying tonight as well and can leave at 10am tomorrow morning.

I had a Mother’s Day lunch today with Gabriela’s school, it was lovely :-) Actually, I am being spoiled this year as I have a dinner with the girls tonight and another lunch tomorrow :-) Great for my diet!!! By the time Sunday comes I probably won’t be able to fit another thing in!

Sim Sergio, 2 each!!!!! Beijos xxx

We met another NB family yesterday as their daughter was also having MIBG therapy this week. Her name is Olivia and she is 4. We haven’t met many other families, so it was nice to talk to them about stuff and hospitals etc.

Here are some pics of Rafael behind the lead shields and of the radiation being administered. His room overlooks the Fitzroy gardens.

 

7th May 2009

One week into May already! There are truly just NOT enough hours a day!!!

We have all enjoyed a 6 week break from hospitals :-) Yeah :-)

Rafael is going back to Peter Mac today for his second round of MIBG therapy. This time will be double the dose, so not sure how long he will have to stay. Last time he was VERY bored, so I have packed LOT’s of toys and books and movies :-) It was hard to pack again :-( I had forgotten just how much stuff we need, even for just a few days!

Dom took the children for a long bike ride on the weekend. They are very good at riding now :-) They even rode all of the way to the front beach here in Sanctuary Lakes (near the entrance)!!

Gabriela went to an ice skating birthday party on Sunday, Dom and Rafael decided to stay and watch. After a while, Rafael decided to give it a try too. They both had a great time :-)

Rafael enjoyed his 2 days a kindy this week. On Tuesday they had a mother’s Day treat for us – morning tea and manicures J I was lucky, the colour Rafael chose was light and he did a pretty good job of painting :-) Too cute

Dom and I started dieting 2 weeks ago and we are doing really well, both lost ~ 2 kilos :-) :-) and we are exercising too (yes, I hear my friend’s shock from here – LOL)

Rafael and I caught up with Cheri yesterday. She worked at Rafa’s kindy and was also Gabriela’s teacher. We went to Gloria Jeans and Rafael wanted a cup cake. Tip to all out there – don’t buy the one with blue icing!! It stained his teeth, lips, tongue, face and hands :-) :-)