Blog: March 2014

30^th March

Look what we are the proud owners of!!!! Saffron on the Hill have their open day today, but we could not make it :-( One of their supporters made this cake to be auctioned today. We put in a last minute bid and now it's ours :-) :-)  Looks too nice to cut & eat ;-) Also, the supporter wouldn’t let me pay!! She bought it for us xxxxxxxxxxxxxxxx

Some local friends have been doing the Relay for Life this weekend and we popped down this morning to say ‘Hi”  

29^th March

We had a very casual BBQ/party for Rafael today We were all in slow motion after our huge week!

Some friends from Dom’s work sent a piñata and it was a huge “hit”

28th March

Tonight was the Gala fundraiser that our dear friend Rosie organized.

We had about 100 people attend in the end. The show went for 1 hour and during that time, Gabriela & Rafael stayed at Rosie’s house with my Mum.

Afterwards they came to the theatre and Rafael met the young girl from the play :-) 

The night passed very quickly and it felt like I didn’t get time to talk to anyone!! If you came, I hope you enjoyed the night?

27^th March

Yep – another platelet transfusion today :-( 

26^th March

I picked up Rafa from Camp at 1pm and we drove straight to Werribee hospital for a blood test. I could already see that Rafael would definitely need a platelet transfusion tomorrow as he’s come home covered in bruises, especially his legs!! He has a bruised cheek, like someone pinched it, but he can’t remember anyone touching him :-( 

I had to put a local call out on Facebook today for help with card opening and counting!! It’s way too much for me to do on my own. Thankfully 1 lady is coming tomorrow and another group of 3 on Friday!! xxx

Rafael had to wait until tonight to open his present from us ;-) 

25^th March

HAPPY 10^TH BIRTHDAY RAFAEL!!!!!

Wow, it was so good to receive picture updates throughout the day from Rafael’s teacher. He certainly looked like he was enjoying the day at Airey’s Inlet :-) :-) 

When I went to give the injection – he ran up to me and gave me a big hug!!

His teacher asked me to take a bit longer, about 20 minutes, as they wanted to set up a surprise.

So we called Daddy and Lela and then went outside to enjoy the view of kangaroos eating the grass.

When we got back to the dining hall, all of the children had formed a guard of honor, and as the song Happy Birthday was playing, Rafael had to walk through and collect a card from each child.

They also had a “cake” with candles and wished Rafael all the best for his birthday.

They saved the best surprise for last! They brought out a huge card – taller than the teachers and every student from K – 12 had signed it!! Truly wonderful :-) :-) 

Dr Michael called while I was with Rafael to go over the mIBG scan. The news is all doom and gloom - however - we doubt the interpretation of the scan!! Long story, short - the Dr who wrote the report was comparing it to Rafael's last mIBG scan that RCH have on their computer - that was years ago!!! As we've been telling them, we do our scans at Peter Mac - doh! So anyway, the report states massive progressive disease with multiple new location - yes, we knew that!!

After talking to Michael for a while, and ice again asking him for a GaTate scan, he agreed. Actually - he seemed very pleased with that suggestion because the mIBG scan report really shocked him (and us!!). Clinically, Rafael is SO much better than he was this time last year. We are going with our gut, which says he has less cancer now than then ;-)

Another special girl is having her very first official birthday today. April Ann didn't have a birth date that Mumma Kaz knew of. This made Rafael quite sad, as he thought everyone should know their birth date So Kaz decided that 25th March would be a perfect day to have a birthday

Happy 1st (ish) Birthday gorgeous girl

By now you know how much Saffron on the Hill means to Rafael and all of us. We love all the dogs there

We were even lucky enough to name one of the new rescued girls "Rio".

24^th March

Lot’s of excitement in the house this morning!!! Rafael woke up early and didn’t complain – he was off to school camp!!!

The kindness of strangers is just amazing. A few weeks ago a couple from Geelong who have a holiday house in Angelsea contacted me. I’m not sure how they heard about Rafael – probably 3AW or Ch7. They offered me the use of their house whilst Rafael was at Camp in case I wanted to be nearby. As it turned out, I needed to be close to give him the GCSF injections both nights.

I headed down after lunch, met Julie and settled in with more card opening and counting

The house was very close to the Camp indeed. I went just after dinner and Rafael was happy to see me and tell me about his day.

23^rd March

Dom picked up Rafael from the party and took him straight to RCH for his platelet transfusion.

Throughout the week, Camp Quality and The Herald Sun have been coordinating a photographer to come out and take some photos of Rafael with all of the cards that he has been receiving.

Tierney came over too and the plan was for Gabriela & Rafael to pose with Tierney. However, the photographer was very annoying and had his own idea of Rafael lying across the kitchen table with cards stacked around him. However, every time Rafael moved – the cards fell down!!

The guy was here for ages and really annoying Rafa (and us!)

22^nd March

Rafael made it to his friend Joe’s birthday sleepover – he has SO been looking forward to it!

21^st March

Rafael’s platelet count was only 11 today and he needed another transfusion.

Whilst waiting for it to start, he bumped his head with his iPad and a big bruise popped up right in the middle of his head!

I had many talks with Jayne (nurse) today about how we could get Rafael to Camp on Monday, as he’s been requiring transfusions every 2 -3 days. At first, they wanted me to get his blood tested on Tuesday, which is his birthday!

We managed to compromise and Rafael will have another platelet transfusion this Sunday instead, as a top up and I’ll pick him up from Camp on Wednesday and drive him to Werribee Hospital for them to check his blood.

He is still having the GCSF injections and I will be staying nearby in Angelsea so that I can go to the camp each evening and give his injection. It also means I get to see him on his 10^th Birthday !!!

3AW called again this morning to find out if Rafael made it to Camp and asked what the card tally is so far. It’s well over 2500, but we have many, many, many cards to open and multiple packages from schools

20^th March

The home nurse came over and changed Rafael’s antibiotic.

We don’t know how, but after she left, Rafael got up off the sofa and started screaming and crying!! He had pulled out his port line and the access needle!!

I had to drive him as quickly as possible for day oncology for them to put a new needle and reattach the antibiotic before his central line clotted and blocked!! Aaarrggghhh

I didn’t think to apply some numbing cream at home before we left, so Rafael very bravely let the nurse place the needle without waiting 1 hour for numbing cream to start working

19^th March

Rafael had the MIBG scan today. It’s very quick, less than 1 hour in total. Dr Michael won’t get the results for a few days, so I’ll call him next week to hear the result.

There was another article in the Wyndham Weekly today about Rafael’s cards

http://www.wyndhamweekly.com.au/story/1798443/card-a-thon-for-rafael-moraes-goes-global/

18^th March

"Scanxiety" - if you look it up in a dictionary - you won't find it But if you ask any NB parent - they'll know the feeling well!

Scans are usually every 3 months, depending on what stage in a child's treatment they are up to. The closer you get to scan day, the more anxious you become.

The cancer is inside, we can't see it with our naked eye - we need special machines to tell us what is going on

This one is very important because it will give us an indication if the last 2 cycles have worked as planned and will also help us plan the next stage

In nearly 6 years, we've had one only period where Rafael waited 6 months for a follow up scan!

Normally Rafael has his scans done at Peter Mac as they have "better" machines and they can also do a different scan called GaTate PET, which has always proved spot on with Rafael's disease status.

Instead, we are "yielding to Dr Michael's wishes" and having a mIBG scan at RCH, which is the routine scan for NB patients.

Today Rafael will have a nuclear medicine injection - mIBG123 and in 24 hours, once it's travelled his blood stream, he will have a full body scan.

This agent can damage your thyroid gland, so as a precaution, Rafael has been drinking 0.4ml of pure iodine since Saturday to protect it Absolutely disgusting stuff - and we have to force him to drink it (mixed with juice)

Rafael needed another platelet transfusion and then we met with Dr Michael again.

Everything is now leading up to Rafael’s Grade 3 Camp next week and keeping him well enough to get there!!

14^th March

Another platelet transfusion and Rafael was able to be discharged

Once again, he has the antibiotic bombs that the nurse comes to our house each day to change. But it’s better than being stuck in hospital.

13^th March

A blood transfusion today as well as starting the dreaded GCSF injections. The needle doesn’t even go into Rafael’s skin; there is a little plastic tube for that. It’s the actual stuff that hurts and he hates!

Rafael’s card wish is gaining momentum and has been published again this week

http://www.wyndhamweekly.com.au/story/1797964/all-cards-on-the-table-to-wish-rafael-happy-birthday/

12^th March

Rafael’s temperature hovered around 38C all night and we really didn’t want to take him to the ER. But at 5am it spiked to 39C so we had no choice ;-)

They checked his bloods and he needed a platelet transfusion and they automatically started him on IV antibiotic

11th March 

Rafael made is to School today – he is always so happy to see his friends.

In the evening we were invited to meet the Westbourne Grammarians Football Club.

Their logo is "WARRIORS"!!!!

Jeremy, who started the club, contacted me and they wanted to present Rafael with his own player shirt #1

They also presented Rafael with a massive banner/birthday card!!!

10th March

Crazy, busy day!! 3AW called me yesterday and asked if I could do an interview on the radio this morning. When they called (9:30am) Rafael was still asleep ;-)

http://www.3aw.com.au/blogs/3aw-news-blog/birthday-cards-for-rafael/20140310-34gf1.html

Then, straight away, Channel 7 were calling again!! In the end, we suggested the reporter come without the camera, just to meet Rafael and chat. The media liaison from the hospital attend too.

After Rafael said 4 times that he didn't want to do an interview, she cut the reporter off and said that it's her role to make sure the children are ok and comfortable and clearly Rafael wasn't ;-)

Chemo finished at 12 as expected, but they haven't taken any blood for testing the whole week!! It was only my asking that prompted them to check - grr!!!!! The nurse wanted us to wait another hour for the results and I said "No - we are in go home more"!!!!!! After discussions with the nurse in charge, it was agreed that we could leave, but had to call later on the check the results ;-)

The first thing Rafa asked was if Kane (BFF) could come over for a play :-) Thankfully he was free and those 2 peas in a pod spent the entire afternoon playing Minecraft!!!

Channel 7 called again (persistent much??) !! I asked Rafael if he would be happy to talk to them if both Kane and Gabriela were there too and they could maybe open a few cards together and he agreed :-)

When the reporter Karen arrived, she asked if Tierney could possibly bring some of the cards around that she's collected from the PO in Werribee.

The results of an hours works was a 1 1/2 minute story on the 6pm news last night ;-)

http://au.news.yahoo.com/vic/a/21905014/victorian-cancer-patients-birthday-card-wish/

I called the ward in the evening, and Rafael's counts have plummeted :-((( Platelets down to just 24 and he's also neutropenic 0.18 neutrophils :-(

He has an outpatient check up booked on Thursday but we doubt he'll last that long before needing a transfusion :-( On Thursday, he will also have a insuflon inserted under the skin in his leg so that we can give him the GCSF injections everyday :-(

9th March

A quiet day for Dom and Rafael :-)

I was contacted by Channel 7, asking if they could interview Rafael about the birthday cards!

Up until today, he didn't really know about the story, but we didn't think we'd be able to keep it a surprise for too long ;-)

Rafael got upset when Dom told him, and he refused to do the story ;-) In the Wyndham article, it says all Rafael wants is cards, not presents, and he got upset because he thought he wouldn't get presents!! Bless him ;-) We explained that it's our job to give him birthday presents ;-)

They ordered pizza again for dinner ;-)

8th March

3 different chemo's today.

Rafael was admitted for the next two days as 2 of them run continuously for 48 hours.

Dom is staying in this time, Gabriela has gone for a weekend sleep over :-)

One of Rafael's friends came in and spent the afternoon with him - they played Minecraft together ;-) 

Dom found a local pizza shop that delivered to the hospital ;-)

7th March

The last few days have all been the same, we head into RCH after the peak hour rush, they connect his chemo, it runs for 30 minutes + 15 minute flush and then we leave ;-)

It takes me more time to drive in and out than the actual treatment ;-)

4th March

Yes, long day, but all went smoothly. I let Rafa sleep in until 9am, then we headed in to Day Oncology and they were ready and we didn't have to wait long ;-)

They ran the Topotecan chemo 1st, while the cross match for Rafael's blood was being done.

That still took a while - 2 hrs!!!

Once it arrived, it took another 3 hours to run through :-)

3rd March

I took Rafael into RCH for his blood test. 

We didn't stay and wait for the results, as Jayne our nurse coordinator said she'd call us in the afternoon and we didn't need to see a doctor ;-)

She called in the afternoon to say platelets had jumped to 56 - therefore chemo could start tomorrow ;-)

However, his haemoglobin has dropped down to 81, so he'll have another transfusion while we are there - makes it a long day for us, but all good ;-)

Today Essential Kids picked up the story about Rafael's birthday cards and as they are part of Fairfax Media, it was shared online in The Age and The Sydney Morning Herald!!! And since then it has been shared and shared and shared!!! On Twitter - Matt Le Nevez and Archie Thompson have retweeted it and on Facebook it has been shared by many groups too!!!

http://m.essentialkids.com.au/health/latest-health-news/nineyearold-cancer-patients-birthday-wish-for-cards-20140303-33yhe.html

2nd March 

We had a great day today ;-)

The Centenary of Military Aviation was held at the Point Cook RAAF base and we all went! The planes have been flying over our house for the last 2 days and we were so excited to get there and see them up close :-)

We had to leave after lunch as Gabriela had a soccer tournament on :-(

But that wasn't a problem - we were just down the road, at Saltwater reserve, which is right under the flight path!!!

Gabriela's team lost, but it was the first time they'd played together as a team :-)