Tuesday, 31 March 2015

Blog: March 2015

31st March

Back at RCH ;-) 

30th March

We went to Gold Class today to watch Insurgent as we had some vouchers and they were about to expire. We ordered lots of snacks and drinks and the 3 of us had a really fun time :-) 

28th March

Rafael had a few friends over for a sleepover birthday party tonight. Jo from Naughty Nush Smash Cakes made a very special one for Rafael this year and had it delivered to the Langham for us to pick up. She also made a mini one that we took to Rockpool with us :-) 

27th March

Alas we had to check out after breakfast to day and head to RCH for transfusions.

The VIP photo was already online and Rafael was able to show the nurses.

26th March

Breakfast was also included with the hotel room and we enjoyed a leisurely buffet. Rafael didn’t eat much at all :-(

We headed back to the pool again for some more fun.

We caught a tram to Docklands for the Les Murray lunch. It was more of a corporate lunch and I think Lela & Rafa might have been the only children there. Pele arrived and after lunch he was onstage with Les Murray and they talked a lot about Football and their careers.

Sitting at the table next to us was Dave from Challenge. We had a quick chat to him. When he found out that Rafael was such a football fan, he said he has something that “might” happen in a few weeks and he’ll keep Rafa in mind. I wonder what it could be??

In the evening, we went downstairs to wait for our “ride” to pick us up. Can you imagine Rafael’s surprise when he saw the stretch limousine? 

The driver had called me earlier to ask if Rafael would like any special drinks or snacks supplied. 

There was a plate of lollies and some bottled water waiting for him!

Lela & Rafa were so happy to be in a limo! We went for a 1/2 hour drive around Melbourne. Unfortunately, 1/2 ay into the drive, Rafael needed to go to the bathroom. We asked the driver to stop at a nearby McDonalds, but he drove straight past. Soon we pulled into the valet area of Crown Casino and Dom took Rafael inside. No ordinary loo for our boy ;-) 

When we pulled in to venue at Docklands, there was already a long queue of people waiting for the evening to start. They all got very excited to see the limo and started getting their cameras out, expecting to see Pele. Rafael was laughing so much inside the car, as it had black out windows and they couldn’t see inside.

When we got out, you could hear their collective “Oh, it’s not him” sighs ;-) 

We were taken to an office on the other side of Docklands where the Meet & Greet would happen. We were getting very excited and nervous.

Pele was meeting with some other people who had paid a lot of money at the lunch auction today to have dinner with him (about $2000!!)

His security and management team started ushering him out to get to his VIP meet and greet ticket holders. As the walked past us, they realised they’d forgotten ;-) His manager said “wait, what about Rafael?”.

Everyone back tracked and Rafael sat down with Pele and had a chat with him. He asked Pele who was the best player he’d played against. He was such a genuinely nice man. He spent about 10 minutes with Rafael was happy to pose for photos and even signed some t-shirts we’d taken with us. He also presented Rafael with his very own ball and signed it - priceless!!!

He left to go across to the venue and as we had VIP tickets, we were also entitled to meet Pele again and have our photo taken :-) 

We got in early and managed to get seats in the second row, very close to the stage.

Pele My Life was the theme of the evening and he spent a few hours talking about his roots and his love of Football.

MAW had given Rafael $150 to buy some merchandise, but there nothing for sale. 

The limo was waiting to take us back to the hotel at the end of the evening. He told us that Pele had already left, on his way to the airport for a private flight up to Sydney. Considering he’s been sick and in hospital and he’s in his 70’s he looks amazing. He is quite religious and thanked God a lot for the opportunities he’s had in his life. 

A very special day and a once in a lifetime opportunity for Rafael (and us)

25th March

Happy Birthday 11th Rafinha - we love you SO much and are very happy that we can all spend the next 2 fun filled, awesome days and nights together.

Last year we heard that Pele was coming to Melbourne for 1 day only, to farewell Les Murray and then in the evening he would he telling his life story. I went online straight away and bought 4 tickets to both the lunch and evening show.

For a few years now, Make A Wish have been asking Rafael what his wish could be? His wishes were either something they couldn’t give or arrange. Well this time the stars aligned and Make a Wish, through Make A Wish international were able to get in touch with Pele’s manager and she arranged a brief window before the evening show for the Meet & Greet. Make A Wish never now how these things will go, as it’s really up to the celebrity and how they are on the day.

Our first stop today was the Aquarium as Rafael really loves it (the sharks!!) and we wanted to treat him to something special for his birthday. He had a great time and could name every shark! We also saw the penguins, waiting to be fed - they were so funny, walking up a hill ad then sliding down the ice ;-)

MAW had booked us into the Langham Hotel and Rafael was very excited to know that it had an indoor heated pool!!! He couldn’t wait to try it out.

When we checked in, one of the PR team came to us and said “Here is our special boy, Happy Birthday”

She then escorted us to our room. When we entered the room, we were blown away by dozens of green & yellow balloons as well as Brazilian themed cupcakes.

There was even a special slice of Langham birthday cake just for Rafa.

We all headed straight for the pool :-) The temperature was good, but the spa was better - very hot!

Before we knew it, it was time to take Rafael to his favourite restaurant - Rockpool!! We hadn’t told him but he was so happy when he realised where we were. He’s been dreaming of having their skirt steak again since we went there last year. MAW gave Rafael $200 towards the cost of dinner :-) 

When we arrived the host was very nice and welcomed us with “Happy Birthday Rafael, welcome back to Rockpool” (they must have been told Rafa had been before)

Rafa ate every bit of his steak. We all enjoyed a fabulous dinner. It’s such a nice restaurant. We realised that we were even sitting at the same table as last time ;-)

We were waiting to order dessert when the waiter brought out 3 plates of different desserts for us all to try and some ice cream for Rafa. They also gave us a goodie bag of petit fours to take away :-)

By the time we walked back to the hotel, we were all ready for bed after such a fun day :-) 

24th March 

We went to RCH early this morning for Rafael’s platelet transfusion so that he was ready for the very exciting 2 days ahead!!

The nurses in Day Oncology sang Happy Birthday to him and he received a gift card.

After many months of planning and delays, Rafael will receive his Make a Wish!!! Tonight the regional MAW team came to our house and officially  presented his Wish booklet. They also gave him a soccer ball.

22nd March

Yesterday Rafael the severest reaction to platelets he's ever had

The infusion started at 150ml/hour. After 15 minutes, a nurse checks Rafael's BP, temp and blood oxygen levels.

Within 5 minutes of that check, Rafael started breaking out in hives on his face and arms and legs and - well, everywhere!!

He was very itchy and became quite stressed when he saw the hives

The nurse could see his reaction and the transfusion was stopped immediately. His BP was very high as well as his heart rate!

They gave him Zyrtec immediately. The nurses had to call doctor.

He was covered in wet towels trying to control itchiness.

They Dr said to also give him some Fenergan.

This combo made Rafael very sleepy too

But at least his vital signs slowly went back down!

A very stressful time, the nurses were checking on him every 2 minutes!
Eventually the infusion was able to start again, but at a much slower rate. So it ended up being a much longer day than expected

This photo was taken after most of the hives had gone and Rafael was almost back to his old self

17th March

An "unexpected" platelet transfusion today

Rafa's gums started bleeding yesterday after he brushed his teeth, and didn't stop! He woke up this morning to 2 pillows, top & bottom sheet and coverlet covered in blood 

13th March

Rafael had a fantastic day on Tuesday.

It was his school's Cross Country carnival and I "dragged" him out of the house to cheer his house and friends on

He was happy to go, but he wanted to sit on the sidelines! I said "No, we are here, let's go see your friends!”

He had so much fun catching up with his friends and rolling around on the grass, he really misses them a lot

One of his friends was walking around the field and Rafael wanted to get closer to cheer him on. As we got closer, Rafa called out "Go Sam!" His friend looked up in surprise and said "there's my motivation" and took off running again

As we were leaving, Rafael said to me "I am so proud of myself for coming today and cheering for my friends. I had such a great day”

On Wednesday we had to be at RCH by 8am for Rafael to have more Bone Marrow biopsies taken. It was the start of a long day

He went under just after 9am and was still sound asleep in recovery at 12pm! It took him a long time to wake up

He was very cold when he came out, temp was down to 34.5C at one stage!! They have these nifty blankets that they blow hot air into. It's a bit like a cocoon

Rafael had that + about 4 blankets on!

After that we went to Day Onc for his platelet transfusion, a meeting with Dr Michael and then a blood transfusion. Day ended at 6:30pm!!!

 6th March

You might remember the massive effort it took to get Rafael to Grade 4 Camp last year??? It was his birthday as well and it wasn't too far from Melbourne. A very kind family let me stay at their house and I was able to keep a "close eye" on him

Rafael only found out yesterday that he had missed his Grade 5 Camp this week

It broke my heart to tell him!! This one was more than 3 hours from Melbourne and the logistics were just too hard! In the end, he was still inpatient when his class left on Tuesday, so he wouldn't have been going anyway

Seeing some photos on Facebook of other Mums sending off their children really sent me over the edge with sadness and despair

Rafael misses out on so much of "normal" stuff - it's just SO unfair and I hate this disease SO much!!!

We have no plans to send him back to school any time soon. I know it's just "Camp", but it's once a year and it's gone

A N D - he loves school!! He misses his friends the most

Instead, we spent a V E R Y long day in Day Oncology today, a day that could have been shortened by at least 3 hours if they weren't so busy!!

5th March

Rafael has been very flat since he got home

He is very happy to be home, of course

The last 2 weeks have really taken a toll on him and he seems to be trying to catch up on the sleep he's lost! Hence the 4 hour nap yesterday and the 4 1/2 hour nap today

The nurse came to our house the last 2 days to administer IV antibiotics. That's all finished now

Today one of his friends was also home from school and they had hoped to spend the day together playing Xbox. We met for breakfast first, but by the end, Rafael was already yawning. We came home and he slept all day

He will have transfusions tomorrow and hopefully that picks him up a bit

Gabriela's arm isn't broken - yay!! Some type of ligament damage

No sport for her for 1 week!
I sent a text to Rafael's oncologist about the "spectacular" scan results and no sooner had I sent it, than he called me! He says Rafael is a mystery - yep, don't we know it

His treatment has never followed the conventional path, we've had to fight to get him the treatment that works, and work it did!! We are still over the moon, yet cautious of the next step! How do we improve on this and finally get him cancer free??? It looks like Plan C has now become Plan D or E or even F

3rd March

Wow, what a day!!! Highs, highs and then a low

After being fever free since Saturday, everything was arranged yesterday for Rafael to be discharged today

RCH still had him referred to Peter Mac for a FDG PET scan (from Friday). 

When I found out yesterday, I emailed Prof Hicks straight away and asked if they could do his usual PET scan (due next week) on the same day???
Well, the answer was yes, they could squeeze him in, however he'd have to fast all day

In the end, Rafael was finally able to eat just after 3pm

They weighed him at Peter Mac and he's lost more than 1 kg whilst he's been inpatient

Down to 18.8 today

His 1st scan was a Gallium PET (the usual one). He was very tired and lethargic and had a bed to rest in whilst the tracer worked it's way through his body and he dozed.

After that scan, we had to go back to the very small waiting area wait for his next tracer injection (~ 2 hrs). For this scan they needed to use a peripheral line

He has no luck with those!!! We managed to get a seat and he just "crashed" dozing off on the chair arm

Just before his 2nd scan (FDG PET) Prof Hicks called us into his office to review the GaTate. Well, short of saying "It's a miracle" ..... It's amazing!!!! 

You cannot imagine our elation at seeing in black and white how well Rafael's cancer has regressed in the last 12 + weeks!!! He has SO much less disease than November 2014!! 3 cheers for Prof Hicks and his team and all that they do!! 3 cheers for us for battling to get him back there

Whilst we were meeting with Prof, the nurse needed to do his peripheral line and inject the tracer. Honestly, Rafael is SO amazing - he went off with her by himself, she blew 1 vein and got it on the 2nd try

At that time, Dom joined them

He was starving by this time!! Only another couple of hours to wait

The FDG scan went smoothly and we had to wait a while after for the Doctors to review the scan (in case he'd moved) before we could go (3pm). I had to buy Rafa some Salt & Vinegar chips on the way out

We also had to be home on time this afternoon because Rafael still needs 2 days of IV antibiotics and the hospital sends a nurse to our house to administer. It's an amazing service and I'm not sure if all hospitals have it??

Rafael was once again SOOO happy to be reunited with Leo

It turned out that they had not supplied us the with stock of Heparin which is needed to prevent blood clotting in his central line! Thankfully, the nurse had a pack in the car and was able to administer the dose after the antibiotics!!
Yeah, finally all done for the day! It was nearly 7:30 pm and we were waiting for Domingos and Gabriela to come home from soccer training so that we could all sit down and have a meal together

Except Dom rushed in, with Lela close behind, crying and in pain !!!! A boy kicked a soccer ball directly onto her arm and Dom has taken her to RCH!!!
Like seriously, can't we get away from there??? I don't have any updates, they are still waiting to be seen

My poor Princess

"Never a dull moment"

1st March

Rafael is up to Day 11 inpatient

He wakes without fevers every day, but at some stage in the afternoon, he spikes a fever and it wipes him out and he needs to sleep for a few hours

He isn't eating much at all and it's taking it's toll on him (and us!)

Today, he was allowed a 6 hour "leave pass" (in between antibiotic infusions). He really missed Lela and had a great time catching up with her. He was also able to FaceTime his best friend and play their favourite game - Minecraft!

The highlights of his afternoon were cuddling with Leo and eating BBQ for dinner

Late Friday afternoon, the team came to meet with us and they have asked Peter Mac to do an FDG PET scan to further check for infections. Of course, it was too late to get a booking by that time

We also met with Dr Michael to discuss the next stage of Rafael's treatment, once he's over this. He was due to start chemo last Thursday. As we all know, Cancer doesn't wait for infections to go away!!

We are hoping to do another set of scans at Peter Mac in the next week or 2, so that a plan can be made. The major issue is that Rafael's blood counts have not recovered at all. He is relying on all of the blood donors in Australia at the moment

He is back in bed at RCH now and is still fever free! 30+ hours and counting down ;-( We don't hold our breath, as we've been in this fight too long

Once 48 hours has passed, then we can celebrate

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