Sunday, 2 May 2010

Blog: May 2010

28th May 2010

Rafael did really well today for the SPECT/CT, he laid perfectly still for 1 1/2 hours and he didn't even want to watch a dvd!! Each scan took about 20 minutes and in between he'd ask if he could move to scratch his nose or head :-)

It didn't take too long to meet with Prof Hicks afterwards. He was very happy with the images. The skull spot was much fainter and he said he could not even see the persistent one in his right femur!!!

So the plan is to have the 3rd dose on 27th July and scan afterwards. This weeks dose was higher, so let's pray for even better news then :-)))

I wrote to Dr Peter briefly with the prelim report and he is very impressed!!!

We are so proud (and grateful) of Prof Hicks and what he is trying to do for NB kids here in Melbourne. No one else in the world is considering using it (yet) and it seems to be working indeed!!!


26th May 2010

Rafael had his 2nd dose of Indium 111 on Tuesday. As usual, the room was not ready and we had to wait for them to move that person out, sterilize the room (they had an infection) etc. So they gave the actual infusion in another room, to get it started at 12:30. This dose was 5.12 (??'s) and Rafael's geiger counter reading was 46 afterwards. It has to be below 12 for him to leave the hospital.

This time Rafael cried a little bit, it seems that he could feel the stuff going up his arm :-( Thankfully it only took about 20 minutes!!
Dom stayed with Rafael, they made a good pair ;-)
I had to go to the US embassy this morning to renew my visa for work. I thought I would be out of there pretty quickly - wrong!! It took 2 1/2 hours :-( I was scared I'd get a parking ticket ;-) When I got back to the car, there were heaps of missed calls and messages on my phone, all from Domingos.
They needed the room by 11am and since Rafael's reading was down to 7, they were litterally taken downstairs and dumped at the front door to wait for me :-(( Poor guys!! But happy to have them home.
Rafael will have a SPECT/CT scan at 9:30 am on Friday ....... I hope we get some good news :-)
Rafael will spend the rest of the week at home, but he should be able to go to a birthday party on Saturday with his class :-)
22nd May 2010
Hello, sorry for the slow updates this week, it has been crazy here!!!
I have just arrived home from a long night at work, but want to get this blog up to date :-)
On Monday, Domingos started working from home and I had to go back to work. We arranged for a friend to pick up Gabriela & Rafael and take them Stacey’s house so she could take them to school. Another Mum from school would bring them home.
By the time I got to the airport, Kim had called to say her son was sick and that she wouldn’t be able to bring the children home. I quickly asked another Mum, but her daughter was sick too :-( Oh well, I had a plane to catch, so left it with Domingos.
At lunch time, the school called to say that Rafael had gone downhill quickly and could someone pick him up? ....... er ..... NO!!
Thankfully (sadly) Goce was also home from work as he was sick and so was his daughter. They went to the school and brought Rafael home. After some time spent on the sofa, he perked up and was running all over the house!!
I kept him home on Tuesday, just in case and he spent the day ..... running all over the house :-)
Domingos struggled with work at 1st as he could not find a comfortable position to elevate his leg :-)
On Thursday Rafael had his 1st school excursion – to the Botanical Gardens. I was debating whether to send him out n such a cold day! He complained to his teacher that he had a tummy ache, but after he spent a long time in the toilet, said he felt better. Then he complained that his legs hurt and he was tired (read “I don’t want to walk”), so she carried him!!!
Thursday was another juggly day with friends picking up and dropping off :-)
Yesterday we left home early so that Rafael could have his blood test before school. We went to a pathology collection centre in Williamstown, but they wouldn’t do a finger prick test :-( I put Angel cream on both of his hands, but they wanted to use the vein in his elbow.
So, very bravely, he sat there and watched as they inserted the butterly needle without any numbing cream :-) :-) and it was over so quickly, much better than a finger prick and lot’s of squeezing L :-)
We made it to school just after the bell :-)
After school, they went to play at Tyler’s house :-) I hear they had pizza and lot’s of fun :-)
16th May 2010
Rafael had been sick last week with a cold, so he missed 2 days of school :-( He was very bored at home!!
Domingos is slowly recuperating, but mostly an invalid on the sofa ;-)
Rafael & Gabriela had their 1st away soccer game yesterday in Keilor Park. Rafael did really well, he's right into it. Gabriela .....  mmmmm .... does skipping across the field count as defending?? :-)))
11th May 2010
Domingos had his surgery on Sunday afternoon. They said it would be about 1:30pm, but he didn’t go in until 4pm. The 45 minute procedure turned into 1 ½ hours + extras, so by 6:30pm I was freaking out!!! What was taking so long? No one called me or told me anything, I just sat outside the theatre :-( Thankfully Andrea came and sat with me towards the end :-)
Domingos was very happy with his morphine pump :-)
He was discharge on Monday afternoon. He had to learn how to go up & down stairs using crutches – very hard I’m told ;-)
Today we went to Ruby’s funeral :-( It was huge, I cannot guess how many 100’s of people were there! It was a beautiful memorial, lots of family and friends sharing memories of Ruby and lot’s of music and photos. I was doing ok for most of it, until the very end, when they played Ruby Tuesday :-( :-(
Mingo was very shattered after the day, we spent a long time in the car, plus the service and he hadn’t been able to elevate his leg. But some strong pain medication helped ;-)
Rafael complained tonight that he was cold, when I took his temp, it was 39.7C !!! Usually that means a trip straight to the E.R. However, we decided to give him a dose of Panadol 1st and keep and eye on him. So far, so good, he’s feeling better and temp is lower. Lots of children in his class have been sick, so we are just hoping he has a “normal kid” thing :-)
8th May 2010

Well, the last 2 days have been extremely emotional, very long and very tiring :-(
Let me say that Domingos is ok, he’s still in hospital and is booked to have surgery tomorrow at 1:30pm to have plates and/or pins inserted. He will then be on crutches for 6 weeks and cannot place any weight on his left leg at all L We will have some juggling to do here, but it will be fine.
He does think his soccer “career” is over now :-( :-(  At least he’s got Rafael coming through the ranks to train ;)
Yesterday, I stayed up all day and crashed about 7:30 last night ;)
Domingos called at 10:15 pm on Thursday night to tell me he was at Werribee hospital and that he would contact me later. I woke at 1am and there was still no call from him. I went downstairs to get my phone and check if he’d left any messages – nope :-( I tried to call, but it went straight to message bank. Since I was up, I decided to check my emails ... that’s when I received the devastating news about Ruby :-( :-(
Well, that was it for me, no chance of going back to sleep! I didn’t hear from Mingo until 3am and I’m sure I wasn’t the loving, comforting wife he was expecting to hear :-( I thought he had broken his foot and he started to explain that it was his leg and he was at a different hospital and it was all “blah, blah” to me :-( I had to stop him and say “Mingo, Ruby has passed away”..... and then I cried and cried and cried. I’d managed to hold myself together for a few hours :-(
I was in a trance after that, packing a hospital bag for Mingo, getting the children ready, dropping them at a friend’s and heading into the ER to find Mingo.
I had already paid for a Mother’s Day lunch through the school and I really wanted to go as they usually have a video presentation of the Prep’s :-) However, I wasn’t in the mood to socialise and chit chat :-( Plus I was already very tired!!!
Lucky for me, Rafael was part of the presentation :-) :-) He was asked “What does your Mum look like in the mornings?” It was hard to hear, but he was saying that my hair sticks up all over the place ;)
As you can guess...... I just burst into tears :-( :-( Who would have know nearly 2 years ago that I would have had that day, as a Mum, to see my son talking frankly about my so called crazy hair!!!! Priceless :-)
I left straight after that, I just wasn’t in the mood :-(
After school pick up, we went in to visit Daddy. The children found it quite strange to visit him in hospital ;)
We stopped at Macca’s on the way home and I put a movie on for the children, with the TV on sleep timer and I think I was asleep by about 7:30 pm :-)
Today I was up again at 5am, but that’s quite “normal” for me ;)
I took the children to soccer training, they were both very excited and seemed to have a lot of fun :-)
Later in the afternoon we went to see Daddy, but the children just wanted to eat his chocolate then leave!!! Domingos actually said to Rafael “Hey, what about ALL the times Daddy stays with you, and I never say I want to go home!” :-) :-) :-)
Poor Mingo, I think he’s a bit bored and lost ;) He hasn’t watched any TV and didn’t know what was going in the world. His boss Richard paid him a visit, and was a bit shocked at Domingos lack of knowledge ;) so he went and bought him a newspaper!!!! LOL – thanks Richard xxx
We went to friend’s for a bbq dinner on the way home and are about to fall into bed :-)
Tomorrow is Mother’s Day – have a great one all :-) :-) :-) xxx
8th May 2010 – continued
Hi, I just wanted to share with you Ruby’s Make a Wish. Jasmine, her Mum, wrote about their long day on 22nd April 2010 xxx

WHAT A DAY!!! Want to give you all a run down, but will need to add a few comments to this update to cover it all :-). First up, at 8am Ruby was joined by myself and Craig, her cousins Isha, Jess, Jemma & Kayla; her friends Brodee, Paige, Eve, Mia, Chelsea & Monique; her Aunty Ash; one of her teachers, Nat Harper; and our dear friend Margie (as resident photographer) for a ride in a pink stretch Hummer.

Oh, and Tex wasn't supposed to come, but wouldn't get out of the car :-). Off to Highpoint we went, singing Karaoke all the way.

First stop was Smiggle, where all of the kids received a rainbow pen and 2 Smiggle badges. Ruby was given a $50 voucher to spend + used another $50 of her shopping spree money here. The girls in Smiggle then made her 2 of the brand new Smiggle Skins for her DS and iPod - all very excited :-).

"2nd stop was Build-a-Bear - and it was THE BEST FUN!!!  The staff were just fantastic and they made every kids day special with the attention that they gave and the enthusiasm that they showed.  Everyone got to build, stuff and dress their own bear - took us over 2 hours - and everyone loved it.  Thank you, Build-a-bear, who gave us EVERYTHING (trust me, this was a LOT) at 50% off.  Ruby's shopping money covered the remaining amount for hers and her friends bears.  This was the highlight of her day - she just wanted to go to Build-a-Bear with everyone and Build-a-Bear - it was the start of her wish."

"3rd stop was The Pancake Parlour, where our service was fantastic - literally waited on hand & foot - and we all got to order whatever we liked (some kids even ordered 2 meals lol).  Rubes didn't feel like Pancakes, so the chef prepared her a rare Scotch Fillet steak (as she like it) whilst the Manager prepared her her own garlic butter. A Lovely! meal enjoyed by all, and the kids all got their own Calendar full of vouchers and stuff.   Oh, and Alice In Wonderland served us, as well :-).  Full as googs, we were off again!"

“4th stop was a private screening of Nanny McPhee & The Big Bang in the Director's Suite at Hoyts. Each child was given a combo, a couple of little toys and some stickers; and Rubes & Tex were given a poster each. We all sat back in our recliners, kicked our shoes off and enjoyed a well-earned rest.”

"5th stop was JB Hifi, where Rubes chose to spend the remainder of her money.  The staff there were more than accommodating, and she bought the new DSi XL, with accessories and Imagine Teacher.  Everone was starting to drag their feet at about here, but 2 more stops to go!"

"6th stop was Sunset Jewellers, where we were all squished into this tiny shop (bear in mind that we were carrying around 14 Build-a-bear boxes lol), where the lovely Miriam & Carlo presented Ruby with her own Pandora bracelet with 3 beads & a gift bag; as well as everone receiving their own Pandora gift bag with a lovely compact, lip gloss & swish keyring.  Then Miriam presented Ruby & I with a $250 voucher.  It was so over-whelming!  How very generous of them :0)."

"7th and final stop was Pumpkin Patch, where the girls there decked Ruby out LITERALLY from top-to-toe with a new outfit - hat, top, coat, scarf, pants & boots.  Rubes was exhausted and grumpy by this stage, especially since we ran out of time to go to Toys R Us, since the centre had closed - lol.  I wasn't too fussed as Toys R Us gave no response when contacted by Make-a-Wish, happy to boycott them :-).  Our day was complete and we all headed home with our drivers to deliver 10 very tired, very excited and very happy kids to their patiently-waiting parents :-)  Rubes was just happy and wanted lasagne, so we ordered-in pizza then headed back to the hospital with ALL of the stuff so she could show everyone there!  Thank you, everyone involved - it truly was her BEST DAY EVER. XXX"
7th May 2010

02:25 am stop press ....

Domingos is in Sunshine hospital. He broke his foot playing soccer tonight. They need to re-set the bones before putting in a cast. Don't have more news, his phone is flat :-( Andrea is with him xxx

6th May 2010

Rafael had his appointment with Dr Peter this morning. All is good :-)

He weighed 15.25 kgs and is 104 cm :-) I didn't see the blood results, but Peter said they were all good.

He has given Rafael a referral to speech pathology and a dentist. Rafael's hearing has gotten worse, and so has his speech. I think he is forgetting the sound of some letters, and therefore has trouble saying them :-(

Rafael also has a bad shaped upper jaw (thanks Daddy!) and this also contributes to his speech issues!
Hopefully they can get us into a community centre as opposed to having to go to RCH ;-)

As for the dentist, the ones at RCH are quite experienced with kids who've had chemotherapy and it's effect on growing teeth.

We stopped in to see Tia Carla and Lisa in day oncology so that they could see him in his school uniform :-) They took photos with him ;-)

We go back in 6 weeks, by which time we'll have had the SPECT/CT scan and hopefully have some idea of how well the Indium has worked.

There is an interesting article from PubMed about the exact treatment Rafael is having at Peter Mac

5th May 2010

RIP sweet Ruby Angel, we will all miss your smiling face :-( Gabriela & Rafael will miss you a lot, especially if they go to camp next month and see that you are not there -(

I am just devastated, Ruby and her Mum Jazz were such a big part of our life at RCH, especially in the beginning. At that time, Ruby was 5 and had relapsed after being in remission for ~ 3 years. She was having chemo every day at day oncology and we always sat together and chatted and played.

At the Challenge Junior Camp last year, Gabriela and Ruby shared a room. Ruby had lost all of her gorgeous long her and Gabriela's reaction was "oh, she cut it short like Mikka"!!!!

I HATE this disease!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Last week Ruby went on her amazing Make a Wish shopping spree trip in a pink stretch Hummer :-)))
God bless you Rubes, we are all better people for having known you and seeing how bravely and valiantly you fought this beast xxx

3rd May 2010

In the midst of emailing Peter Mac today - they called - ESP??

We have a DATE!!! :-)

Rafael is now booked in for 25th May for 2 nights this time, which means a much higher dose.

This time they will be doing urine tests throughout, to check for excretion rate, I guess?

Rod is happy for Rafael to NOT have a scan in between :-)

So the delay will end up being 5 weeks :-( I'm sure that is still fine, otherwise Rod would have pushed for earlier!

1st May 2010

Today I have a very heavy heart :-( Sweet little Imogen flew up to heaven today at 01:19 am in Perth, Australia.
Imogen relapsed last September and her tumour became resistant to chemotherapy.

Out of options, Fiona and Jason took Imogen on a Make a Wish trip to the Gold Coast and also had a pool installed in their front yard for Miss Immie to enjoy. And enjoy she did :-(

She celebrated her 6th birthday only last week - now she is forever 6 :-(

Dear Immie, we will miss you so much. I am glad you are now pain free - soar with Angels