Thursday, 31 July 2014

Blog: July 2014

29th July

We had to wait ages to see Dr Michael today - was crazy!!

When we finally got in, we also took up a lot of his time, more than 1 hour going over all of the results and working out a plan going forward.

26th July

We woke up early so that we could go to the airport to meet Dom and Lela when they arrived :-) I didn’t even need to ask Rafa twice to get up ;-)

The flight was a little delayed, so we could have stayed in bed longer ;-)

Rafael was SO happy to see them :-) 

They did well and managed to stay up the whole day to avoid jet lag. Gabriela even found the energy to go to a trampoline place with her friends for 2 hours!!

25th July

Walk-a-thon at school today. Rafael was adamant that he wasn’t going to do it. They held and assembly first and all the children were very excited and I think Rafa just got “swept up” in it and actually set off running with his friend Kane!

Not sure how far they ran, but the first time they passed me, they were already walking ;-) Rafael managed to complete 5 laps and it really took a lot out of him :-( 

Each time he passed where I was standing, he was with a different teacher, who would be hearing the story of his World Cup trip repeated over and over ;-) Mr Talkalot ;-)

FaceTime worked well again tonight ;-) 

24th July

Rafael finally made it back to school today :-) I had to buy new shoes yesterday as his ones from last term had holes in the bottom - oops ;-)

He was a bit nervous about going to school. I’m not really sure why? Partly because it was a Thursday and not a Monday!!! He was looking forward to seeing his friends. I drove him so that he could sleep in a little.

After I dropped him off, I saw him outside already playing downfall with his friends :-)

Dom and Lela are on their way home now :-) Very long trip for them :-(

When it was time for Rafael to take his chemo, he was on FaceTime with his BFF Kane, I told him that if he hurried and just took them, he could go straight back. Well, that was a little incentive. He still complained a lot, but the whole process was a lot quicker ;-) 

23rd July

Last day of appointments today :-) 

The mIBG scan was pushed to 12:30pm, so I let Rafael sleep in as long as he could :-)

The scan is very easy, he just has to lay very still on the machine while it does 3 different angles. It took about 1 1/2 hours and then we were on our way home - happy to be done for the week :-)

22nd July

Another early start for Rafael and I today :-(

Audiology appointment at 9:30am, but she didn’t call him in until nearly 10am - really??

It was a bit of a waste of time, as Rafael is already looked after by Hearing Australia. The lady had no records at all of any of Rafael’s previous hearing tests, even though Australian Hearing cc them on all reports ;-)

She took Rafael off alone to do the test, it didn’t take long. She confirmed that his R ear is profound hearing loss and L is moderate. We have an appointment coming up in a few weeks with AH, so I’ll know more then.

This made us late for our next appointment at Nuclear Medicine for the tracer to be injected through a canulla for the kidney function test (GFR).

I was really annoyed at the way the bookings were made. For us to get a clear idea of Rafael’s kidney function, he needs to be really well hydrated for at least 24 hours before. Well, yesterday he couldn’t eat of drink for nearly the whole day!!! Insane :-(

Thankfully the canulla Duncan put in yesterday was still there and he was able to use it again today :-) 

Straight after this Rafael had an echo cardiogram, which is done with ultrasound. It doesn’t hurt or anything, just a bit cold from the gel ;-0

My friend Susan came to spend the day with us and she almost got a tour of the whole hospital ;-) Outpatients, Nuclear medicine, Echo, Day Oncology :-) It was very nice to have someone to keep me company xxx

For the kidney function test, they take 2 vials of blood at 1 1/2 hrs and 3 hrs after the nuclear tracer was injected. From this, they can test it and see what rate Rafael’s kidneys are flushing the “toxin”. We are not expecting a true or good result due to yesterday - grrr!! This is a very important test for us, as a lot of Rafael’s treatment options will depend on his GFR being above a certain rate. 

I went to pharmacy early in the day to make sure the chemo order would be ready on time and it was already waiting for us ;-)

Before we could leave, Rafael needed to have another tracer injected, this time through his port. It’s called mIBG 123 and it’s a nuclear tracer for the mIBG scan tomorrow. It needs 24 hours to move through the body, so that the scan will be at optimal “radiation emitting” tomorrow (or something like that!)

Once that was done, we hurried back to Day Onc so they could remove Rafael’s port access, pick up the chemo and we were free to go!! L O N G day :-(

Rafael ordered another double cheeseburger on the way home - hungry boy ;-)

He has to take the oral chemo Temozolomide on an empty stomach. That meant eating dinner at 4pm, so that I could give him the pills at 6pm.

As per each cycle, Rafael cried and complained a lot about taking the tiny, teeny, little pills - he just hates it!! They don’t make him sick, or gag, he just has an emotional dislike for them ;-)

21st July

8am at RCH. Rafael could not eat or drink after 2am ;-(

First bone marrow aspirates and trephine. 

They give him a drug called propifol which make shim wake up really slowly. It took ages today!

When they finally called me in, he was very cold and they had him wrapped up in a blanket that is attached to a pump and blows hot air around - I wanted to climb in!!!

Rafael needed to fast again from 11am onwards for the CT scan this afternoon. He only woke up at 10:30 from the anaesthetic, but I managed to get him to drink some water and eat 1 piece of cheese with crackers.

Laurie from LozDog designs was holding a shoe graffiti workshop on the Kookaburra ward today. It was his first session :-)

We went along and Rafael designed his own “Brazil” pair :-) Laurie didn’t have time to help Rafa finish the lettering, but as we would be at the hospital all day, he said he could follow us around and finish them off :-) 

Another friend Alison also came and sat with us for a while as we waited and waited and starved and starved! if Rafa couldn’t eat, then none of  us could ;-)

We ran into Duncan from Nuclear Medicine on our way to the CT and he reminded me that they could not use Rafael’s port access line for the CT tracer as it needs to be forced through :-( Thankfully they have great new device that numbs the skin in 30 seconds and he managed to get a canulla in first go!!

Rafael needed to drink a contrast fro 1 1/2 hrs before the scan. I thought I would have trouble getting him to take it. But we stayed with a nurse and she just kept bringing him small cups at intervals and he was happy to drink it (a bit like orange cordial).

Laurie sat with us finishing of a pair of shoes for another boy who couldn’t make it to the activity room and also finished the lettering on Rafa’s pair.

CT went well. I showed them the scan from Peter Mac and they showed it to their Dr and he decided to also include neck area in the CT scan as it was only meant to be abdo/hips/pelvis :-0

Rafael was starving by this time and asking for 2 cheeseburgers!!

We went upstairs to pick up Rafael’s chemo so he could start tonight and of course, it wasn’t ready!! Dr Michael had not written up the order - grrr!! Another doctor, Jordan, was there and said he could write it up, but it wouldn’t ready until much later.

I said “It’s already 1 week late, what will another day matter? I’ll start him tomorrow instead!” :-)

19th July

Today we finally went to Saffron on the Hill to visit Mumma Kaz and especially Leo!!!! Leo had surgery while we were away and we’ve been very worried about him :-( Rafael spent a lot of time cuddling him and also his girl, April Anne xxx

17th July

Bright and early at Peter Mac today :-) I asked my friend Staczia to come with me, as these particular scans always make me nervous and I didn’t want to be alone.

We met with Prof Hicks afterwards and he had a long chat with Rafael about the trip :-) Rafael gave him some gifts too :-)

We had Dom on speaker phone so he could hear what Rod saw on the scan, and it wasn’t good news :-(

Since the previous scan in April, the lesions are more intense (there is more uptake). There are no new spots, which is good, but it shows that the latest cycles of irinotecan/temozolomide are no longer effective at fighting the beast!!

16th July

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!!

15th July

Yeah, finally home!!!!!

Rafael was wide awake and asked Nanna to cook him egg on toast at 11:30pm, and then he watched the final replay (in English!)

14th July

2 flights today, next time we sleep, it’ll be in our own beds!!!

13th July

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? ;-)

12th July

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

10th July

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!!!

9th July

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!!

8th July

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 :-( 

7th July

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!!!

6th July 

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 ;-)

5th July

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!

4th July

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" 

3rd July

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 ;-)

2nd July

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 ;-) 

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