Saturday 31 May 2014

Blog: May 2014

30th May

After 36 hours of travelling, Dom & Lela have arrived in Brasilia :-)

29th May

I drove Rafael to school so that he could sleep in - he’s very tired after yesterday :-( 

28th May

Athletics Carnival. 

Each child had to choose 4 events to compete in. I don’t know why, but Rafael chose – 100m, 200m, 800m and Shotput!!!

Rafael had the whole crowd cheering each time he competed, especially his valiant effort in completing 2 laps to finish his 800m event! I could see that he was struggling after the 1st 50 m; I don’t know why he felt he had to run the whole way!! I ran across the field to walk next to him and encourage him to keep going. The events are based on their school houses and each competitor gains points for their house. He really wanted to finish for Steedman!!

I spoke to Prof Hicks later on and he was really angry that RCH had not given him a transfusion! He said that running with Hb of 82 was equivalent to running on Mt Everest!! It’s my fault, as I didn’t think to tell RCH that it was athletics today!!








Here are the links to 4 videos I uploaded to YouTube xxx

http://youtu.be/LE0ZO615zGw
http://youtu.be/Bc4Dngr6Fro
http://youtu.be/e4EO7Dbmqhs
http://youtu.be/moASSaA_pSo


 Dom and Gabriela left tonight for their long trip to Brasil

27th May

We were meant to see Dr Michael today, but he was sick so we had to see Dr Jordan instead. Rafael felt like he needed a blood transfusion. His Hb was 82, so they didn’t give him one. We were sort of hoping he'd get a "top up of red cordial" as tomorrow the school has its athletics carnival.

Dr Jordan was quite “aggressive” with me today! I was shocked. He came in “huffing & puffing” about why we are giving Rafael chemo in Brasil and we should just let him be and “see how he goes” He’s not even our doctor and doesn’t know Rafael’s plan!!



23rd May

Mumma Kaz drove a long way today to rescue a pug cross puppy from a puppy farm and walked away with 2!! Lucky for us that she was driving past our suburb, so I dashed from school, to the side of the road in Point Cook just so Lela and Rafael could have their very own Pug Puppy cuddles!!! And Rafael was able to catch up with his favourite girl April Anne




21st May

Rafael went to school this week. Dom & I picked Rafa up at school to get to RCH by 1 pm.

Rafael had his standard finger prick blood test first, no stress, no problems

Then we sprung a surprise on him (which back fired on me!). He needed to have a flu vaccination before going to Brasil. As expected, he became very stressed at the idea of having a quick, "painless" needle! Thankfully Dom was there too

To make it "easier", I said I'd get one too It really didn't hurt, but Rafael is still saying his arm hurts

Dr Michael has just returned from the Advances in Neuroblastoma Research conference and he discussed Rafael with one of the German doctors.

The "plan" keeps evolving and we discussed it at length today. A lot of "details" will be sorted out whilst we are in Brasil

When Rafa and I get home mid July, he will have every test and scan again, before a final decision is made about the next step.

Rafael is feeling good, looks good and is SO happy being at school everyday with his friends :-))))



The final birthday card tally .......... 13,327!

16th May

Guess what finally arrived today? Our World Cup tickets!!!



Today was the last day of this cycle and Rafael had a major meltdown when we arrived

Rafael needed to take the last 4 capsules of his oral chemo. Unfortunately, he vomited after 3.

I called the pharmacy and they arranged another 3 replacements to be waiting for us when we arrived at RCH.

Well.... Rafael got himself so worked up and stressed about having to take the pills again - resulting in a huge meltdown like I haven't seen for a long time ;-( He was scratching his face, crying and saying over and over "I hate MY life!" I don't blame him at all, but geez, it's hard to be the tough Mum when you just want to console your child and make it all better!!

It took more than 45 minutes to get him to even try to swallow the pills and he vomited the 1st one Slowly, I managed to convince him to take the rest. Then he was stressed that I'd go to pharmacy to replace the 1 he'd lost! So, "between you and me" ... I let that one slide!!!

Once he kept it all down, he was fine, back to his normal, happy self :-)



Rafael has 2 weeks off now before the next cycle and will hopefully be at school most of that time

We went to see the Jeff Dunham show tonight. It was very funny and a lot “ruder” than I was expecting ;-) Thankfully a lot of that stuff goes over the children’s heads!


15th May

Challenge have loaned Rafael an iPad to use this week at the hospital. He loves it because he can watch all his favourite YouTube videos!

After Rafael had his dental appointment. Still waiting for some teeth to come through.


14th May

After the chemo finished we went to eat pizza at Rafael's favourite cafe – a late lunch/early dinner - bonus



13th May

Rafael was feeling car sick on the way in to the hospital today

He was quite "green" when we arrived!

However, I found the chocolate chip cookies he loves he managed to eat 4!


12th May

Day 1 of next cycle



9th May

We saw 2 doctors today and all is set to start the next cycle of chemo on Monday.

Rafael's platelets were a surprising 66!! Yeah

He will also have his 3rd dose of Zolodronic Acid, to stop bone pain and prevent any breaks that the tumours might cause



3rd May

Rafael had a great week at school - he managed 4 days!!!!

On Wednesday I suspected he'd need a platelet transfusion, as he was covered in bruises.

Unfortunately he also needed a blood transfusion, so it turned into a very long day for us.

We met with Dr Michael to discuss his upcoming treatments and the best way for us to get him to Brasil.

All is on track to leave on June 10th!!

He will have 2 more cycles of two "less toxic" chemos and we will take another in oral form to give as a 3rd cycle in Brasil.



Wednesday 28 May 2014

Blog: 28th May 2014 WB Athletics Carnival

I know that I am really behind on blog updates :-(

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I took Rafael to RCH yesterday for his clinic appointment. He felt like he needed a blood transfusion and I was hoping he did get one, as today his school held its athletics carnival. A boost of "red cordial" would be just the thing to help him get through the day ;-)

Alas, his count was borderline at 82 and they only transfuse at 80 or lower ;-( Bugger, just a smidgeon;-)
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I have published 4 videos to YouTube showing Rafael's determination, as well as photos of the day :-)

Photo Montage

800M event

200M event

100M event

When asked to choose 4 events to compete in, Rafael chose 100m, 200m, shot put & 800m!! I'm not sure why he chose the latter or if he was even thinking about how hard it would be ;-)

Before the race he was very nervous and saying things like "I don't want to race, I'm going to come last!" The school is divided into 4 houses and I encouraged him to try anyway, at least start and gain some points for his house (Steedman).

After about 100m, Rafael stopped running and started walking. I ran across the field to catch up with him on the other side. He already had a stitch :-( He said "I can't do this! My side hurts" I asked him if it was ok if I walked along the outside of the track with him and he said yes :-)

At times he would take off running and I thought I might have to run too - no way!!! As he passed the other field events, all those children were cheering and encouraging him :-)

When he came around the home stretch, the children waiting in the stands started chanting and cheering "RAFAEL, RAFAEL" - it was a truly amazing moment to witness. I was so proud of Rafael's effort as well as the attitude of all the students at the school, supporting their little Warrior!!!!

I didn't cry (well, I would have if I'd had to run!) but I definitely had tears in my eyes as I was trying to take photos and video ;-)

After the race, another Mum came up to me and said "That kid, he had us in tears in the stands" xxx

Throughout the day, many children came up to Rafa and said  "Well done Rafa" :-)

Rafael did well in the 200m and 100m as well :-) Yes, he came last by a lot, but his little legs kept carrying him and he was very determined :-) Those same legs that 1 year ago were full of cancer and he was in so much pain that he couldn't even walk :-(

We love you Rafael!!

And extra special mention to Gabriela who is the House Captain of Steedman :-) She gave it her all too, leading by example and trying her best :-) We love you Lela!!!

ps: Dom and Gabriela flew out to Brasil after the carnival - I'm sure Lela would have been asleep before the plane took off ;-)