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
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.
