Today we were back at RCH for blood counts and chat with Dr Michael.
Tomorrow we go to Peter Mac for PET scan and will see Prof Hicks
We have a huge week ahead of us, scans, tests, more scans and more tests!!
Maybe 1 or 2 days of school too
Home now, keeping warm :-) ps: It’s C O L D here!!
We had trouble at the Brasilia airport as they wouldn’t allow Rafael’s wheelie bag as carry on luggage - grrrrrr!!! I had some choice words to say to that lady ;-)
The flights went very well. Rafael cried a lot on the way to the airport, on the flight to Sao Paulo and on the flight to Santiago :-( He was so sad that his cancer meant that he could only stay 5 weeks and it wasn’t fair that Daddy and Lela could stay longer :-(
We stayed at an airport hotel in Chile and were able to watch the final World Cup game in Spanish ;-) Of course, we were both cheering for Germany and very happy that they won :-) We were in shock though when Lionel Messi won player of the tournament??? What the? ;-)
Our last game today :-( Rafael is very excited as he will see Holland play :-)
Seeing Brasil play a 2nd time is a bonus, except the team is really bad - oh well ;-)
Rafa and I fly out at 5am tomorrow
Yeah, Rafael doesn’t need to spend a whole day of his holiday at the hospital getting a blood transfusion!!!!
He just scraped through with a count of 102
His count needed to be >100 for him to be able to fly comfortably :-)
We had another awful day at the hospital, the public system here is truly bad. I feel sorry for the people who are dependent on it :-(
In the oncology waiting area, there was a lady with 2 children sitting next to us. She had travelled all morning from a city in Goias for her daughter's treatment. She was a very poor person. The hospital does help the poor by supplying some food. Sadly, this lady arrived after 11am (as she had to travel so far!!) and the "rules" of the hospital are very strict. You must arrive before 11am to receive food!!
Can you imagine when was the last time they ate? They were hoping for and expecting some food once they arrived Now they would have to sit and wait for hours on end to be seen by a doctor.
There were 3 doctors and 50 patients waiting in oncology!! The head nurse was very kind and she really wanted to help the lady, but rules are rules Outside of the hospital gates, there is a little kiosk. I think they were going to ask people to give the lady some money so she could buy some food.
I was so sad when Mingo told me. Having to go through the public health system here is hard enough for the poor. Imagine having a child with cancer and spending hours and days at such a place? And imagine travelling hours on a bus to get there? This is the real Brasil - over US$3 billion spent on 12 stadiums for the World Cup!!!
Today we all went to a club and had hoped to swim. However, because Rafael’s bathers were board shorts - they wouldn’t allow him in the pool :-( He was very sad and we were very cross!!
He tried his hand at fishing for the first time ever, and was bored after a few minutes ;-)
He enjoyed the afternoon a lot, playing soccer!!
Too much stress!!! Brasil V Germany semi final ;-)
What can I say??
It was a catastrophe and of course, Rafael (and the whole house) is devastated !!
He couldn't watch anymore after the first 3 goals!
He's ok now, he's hoping Holland will win their first World Cup :-)
The upside is that we will now see Brasil play again on Saturday in the 3rd V 4th playoff before we fly out on Sunday
In the wars today, Gabriela accidentally bumped her knee into Rafael’s eye while they were in the pool. And then, out of no where, the dog bit Gabriela’s hand :-(
Today is one of those dates that is forever seared in our mind. We are asked many times to mark the date on forms
Today, Rafael is 3757 days old (10 years, 3 months & 13 days)
As it's also 7th July - he's been fighting this beast, Neuroblastoma for 2192 days (6 years)!!!
A few days before, after many test were performed, the Dr said to us, "It could be one of three things - lymphoma, leukaemia or neuroblastoma. Of those 3, you don't want it to be NB!"
Before we were given the official diagnosis, we already had confirmation it was NB as a simple urine test that has NB markers was through the roof, and if you don't have NB, then it's normal
Our Warrior has been through so much in that time and he still has a long road to recovery ahead. We return to Australia next week and I already have all of his tests and scans booked in. We have 3 days of many tests to gather the most up to date status of his disease so that he can progress to the next planned stage.
At the moment, we will try to harvest some more stem cells before he heads to Sydney for high dose mIBG therapy. Although he has had similar at Peter Mac before, this one is higher and requires a paediatric nurse, which Peter Mac doesn't have We will have to spend about 1 week in Sydney before he is deemed "safe" to fly home and then receive his stem cells back to support his depleted bone marrow
Thank you all for showing Rafael your love and support!! Bring on 2015!!!
Today was the 1st Sunday of the month and we were able to go and watch the changing of the huge national flag in Brasilia :-) Last time we were here, we missed it by 1 hr! Today we were 1 hour early ;-)
Off we go to game #6!!! Argentina V Belgium. More than 100,000 Argentinians have arrived in Brasilia for the game! It will be crazy Can you guess who we are going for??? Hint - we are mostly dressed in black and red (or green)
Well, the fans didn’t disappoint :-( They sat where ever they wanted, started fights and caused lots of anger :-(
I stopped watching the game after half time and stayed outside the arena chatting to people from all over the world ;-) I watched as the riot police entered the stadium to sort them out ;-) There was no real trouble - no one wants to mess with those police!
Good news today
Rafa had an appointment with Dr Jose at 11am to check his blood counts post chemo.
He saw us waiting in the "crazy/busy" waiting area and came to have a quick chat with us. As he knew that we only needed to hear the result of Rafael's blood test, he said we could leave and that we could call him later to check the result :-)
Bonus - in and out in 30 minutes
We called in the afternoon and Rafael has "just" sneaked through again with a platelet count of only 27 His Hb is great at 100!
We don't have to go back until next Thursday, in preparation for his blood transfusion on Friday so that he can fly home "comfortably"
We have to try all options.
A friends Dad suggested we go to a city close to Brasilia to visit the “Church” Casa Dom Inacio de Loyola.
Many thousands of people travel from all over the world to be “healed” by the priest Joao.
To say I was skeptical is an understatement, but I wanted to go with an open mind and give it a try.
We met Fr Joao this morning and he wants to see Rafael again at 2pm.
We got the impression he would actually speak to Rafael.
The whole day was long, hot and tiring and after waiting more than 4 hours to see him again, with hundreds of other people crowded into a tiny area, we were herded into a room and told to keep our eyes closed. The priest walked in, said about 4 words and left!
So that’s it - Rafael is cured :-) :-) Let’s see what happens ;-)
Today we all went to a typical Brazilian barbeque restaurant for my sister in law’s birthday lunch :-) Rafael didn’t eat much :-( Even though he’s a carnivore and pretty much only eats meat ;-)