Blog: September 2014

30th September

Here is a link to the interview xxx

http://tenplay.com.au/news/national/2014/9/30/charity-act

29th September

Today Rafael took part in an interview with Matt Le Nevez to promote YAMS foundation being the charity at this year’s Moto GP ;-) It was a follow up form last year’s interview and Angela Bishop flew down from Sydney to do the interview.

Prof Hicks was away and sad that he couldn’t catch up with his little buddy ;-(

On the way back to the car, Rafael fell over and cut his knee ;-( At first it looked like a scrape, but then we could see where he’d taken a big chunk of skin out and it’s wouldn’t stop bleeding!!! Low platelets don’t help ;-)

25th September

Today we drove to Saffron on the Hill to visit and drop off Lela who is volunteering her dog patting/grooming/feeding skills for a few days ;-)

Rafael was just SOOOOOO happy. He loves them all, but each and every time they meet, it's a renewed love between Rafael and Miss April Ann

Of course, Leo & Maggie came with us and Maggie has stayed with Lela

There was no way Rafael could be apart from Leo

24th September

Another meeting with Dr Michael today.

He is attending a few NB conferences in the next few weeks and he is always looking for other options for Rafael (and NB children).

We are now waiting for the outcome of 2 meetings at RCH next week.

The 1^st is on Tuesday called Novel therapies. Michael is applying for a general approval for any/all NB children to have access to High Dose MIBG therapy at Westmead hospital in Sydney. This would mean that they don’t have to seek special approval for each and every case. There was a very long document and proposal that Michael had to write.

He said that Rafael is at the top of the list to go to Sydney, which we knew. He hopes to have an answer by next Friday.

The 2^nd meetings is a weekly oncology meeting where all of the doctors get together and discuss a specific case. Next week Rafael will be the topic (again!) and doctors can add their won ideas ;-)

Although Rafael felt like he needed a blood transfusion, his count was 93 - so he just scraped through. Sometimes I wished they'd just give him one so that he'd feel better and have more energy He's always struggling with low counts and he always has to wait for them to come up on their own - hard work!!!

Our friend from Hobart popped into RCH on his way home :-) 

23rd September

We decided to do Rafael’s blood test today as it looks like he might need a transfusion tomorrow. Better to know now if we have to spend hours at RCH ;-)

I called the nurse in the evening, but she didn’t have the result in front of her. However, she did remember that the count was ok, so that means it’s above transfusion level ;-)  

21st September

Another 5 days of chemo done - what a way to spend the 1st week of school holidays

Thankfully, these rounds don't affect Rafael too much. However, he is starting to look pale and feel tired, seems like a blood transfusion might be needed this week

Today Rafael had a needle in his thigh called "PEG" to help boost his white cell count. We put numbing cream on the spot for about 1 hour beforehand, but he still hates it and complains a lot

We give the needle under his skin and he usually doesn't feel the prick. What he feels is the liquid pooling under the skin, causing pain

Love you Rafa - you are SO brave

16th September

Day 2 of another chemo cycle done ;-(

14th September

Today was Gabriela’s last soccer game of the season and they won! ;-) ;-)

11th September

Both Gabriela and Rafael performed tonight ;-) We are so happy that Rafael was well enough to participate again this year. He was nervous and excited! And he made a very funny clown ;-)

Gabriela’s role was downgraded after she missed so much school by going to Brasil – doh ;-) and she made a lovely servant ;-)

10th September

We met with Dr Michael today and the plan going forward is on track, but taking time!!! There are a lot of hoops to jump to get Rafael to Sydney for high dose MIBG. RCH has to pay Westmead $30,000 up front, therefore, there are piles of paperwork to be filled in and many i's to dot and t's to cross!!! It will be approved, but it's taking its time!!! If only Peter Mac had a pediatric nurse ;-(

In the meantime. Michael said that Rafael should go back to 21-day cycles of Irinotecan/Temozolamide (the pills Rafa hates!!)

Previously, he had told Rafael that he didn't need to take the pills anymore. You can imagine Rafael's reaction last week when he heard the news!!!!!!!!!!!

Rafael's last tests showed that Irino/Temo is no longer stopping his cancer from growing, but we agree that it's better than nothing while we wait. He had a great response to it last year and we can do it at home, all oral

Rafael is now on school holidays and very excited to be able to spend 24/7 with Leo In fact, he told me that he never wants to go on another holiday, as he can't be away from Leo

So - the "plan"...

High dose MIBG therapy @18 Gig - followed by his stem cells (collected last month) being re-infused (~Day 14).

Recovery and then high dose chemo (BuMel) with stem cell rescue (those frozen since 2008)

This will take us until the end of the year and hopefully Rafael will be able to access an antibody trial on compassionate grounds (still being worked out).

I am going to an NB conference in Sydney in November and Dr Alice Yu who discovered and created the antibody trial will be there, so hopefully I can have a "chat" to her :-) 

Gabriela has been sick the last few days with very high fevers and a very sore throat ;-( Today was the 1^st day of the Performing Arts Festival. She didn’t make it to school, but did manage to drag herself out of bed with a 39C - the show must go on ;-)

5th September

Wow, I'm not sure if this is a record for the year - but Rafael made it to school for 5 whole days!!!

Today was Father's Day Breakfast and Footy Day at school. Dom happily drove both to school and enjoyed his chat with other Dad's - his children weren't seen again ;-)

Today, I could not help but reflect on the difficult year Rafael has had ;-(

This time last year, he couldn't walk, was in so much pain and taking SO much medicine ;-(

Rafael had a LOT of cancer then and he still has a lot now, but his quality of life is so much better. If you ever get to have a conversation with our "God" AKA Dr Rod, he always brings up quality of life ;-)

Well, here we are, another year down the road and Rafael had a blast at school, kicking a ball with his friends and eating some pancakes for breakfast. He did go back to visit Dom at some stage, although Lela didn’t ;-)