Friday 1 March 2013

Blog: March 2013

31st March 2013

The Easter bunny found his way into our house - again!!! 2 very sleepy children woke up very late ;-)









29th March 2013

I flew to Singapore on Wednesday for my last time :-( I've been staying at the same hotel for 19 years and it was sad to know I might not fly there again ;-( Never say Never ;-)

Lela was away at Camp, so it was just the boys ;-)

Dom took Rafael to soccer training and he ran around and was fine, no pain!!

Dom gave him one more day of Ibuprofen on Thursday, his last day at school before the holidays.

Nanna picked up Lela from school and it seems she had a wonderful time at camp. Abseiling was her favourite thing. She complained a lot about the 20km bike ride ;-)

My flight out of SIN was delayed 2 1/2 hrs, which meant I didn't get home until 11am - too late to try to have a sleep :-(

We went to our friends, Daniella and Andrea's house for Good Friday lunch. We have been there the last few years, so it's sort of a tradition :-) I was very tired, but had a really great day :-)

25th March 2013 cont

I had written to Rod and Tim over the weekend expressing our stress about Rafael's pain level and the fact he wasn't given anything to take and we weren't warned how intense it would be!!! 

Rod suggested we see Dr Peter to get some steroids.

Anyway, Dr Tim rang me today to see how Rafa was. I ended up having a huge vent at him :-( He was the one who told us last Wednesday that Rafael would need a prescription for steroids, but by the time we left Peter Mac, nothing was said about it again. We are stressed that all we have planned is a 2 week and 4 week post treatment blood test. Nothing else!!! 

It was good to talk to him, I felt better after. He suggested we wean Rafa off the panadol and keep him on Ibuprofen until at least Wednesday.

At the end of the day I sent them both an email with some pics of Rafael's "B.B.E"

Rod replied: "Thanks for these wonderful photos and the feedback. This is what makes our job so rewarding despite not always achieving all that we would wish for our patients.
Seeing Rafael's smiling face fills me with so much joy, it is almost like having another child. I meant to call today but got caught up. Please let him know that I was thinking of him on his birthday and give him a big hug for me. "

25th March 2013


HAPPY 9TH BIRTHDAY RAFAEL!!!!!!

Gabriela headed off to school camp today and she will be away for 4 days :-(

We made sure that everyone was up early with enough time for birthday hugs and kisses before Lela was picked up and I took Rafa to school.

He was so happy to be going back to school :-) We are keeping up the pain medicine, even though he's not complaining.

All his friends came running up to to say Hi and wish him a Happy Birthday. His class made a very cute birthday card for him too :-)

One of the Grade 12 students makes divine cup cakes and I arranged for another Mum to pick some up and bring them to school for Rafael and his class :-)

The school also turned Rafael's day magical - during lunch time, both Grade 3 classes went across the road to play on the playground and have a soccer match in the larger grassed area. Rafael LOVED it! He took a tumble, got up and then kicked the winning goal :-))) 

Rafael had more surprises waiting for him after school. The Wyndham Highway Patrol car came for a visit!! Darrin was back for his 3rd visit to our house and another sticker was placed on a car ;-) Ironically, that car is being traded in tomorrow, so the sticker will only be on for 1 day - but hey! It's Rafa's birthday - who cares???

Another Mum from school, who is also Rafael's tutor, asked if she could come over and bring some balloons. We teed it up so that her boys could ride in the police car too. Well, when she arrived - she had 50 balloons!!! Amazing :-)

Rafael wanted McDonalds for dinner, so Dom picked it up on his way home.

As officially declared by Rafael - "Best birthday EVER" :-))))))))))





















24th March 2013

Today Rafael turned a corner :-) He woke up and wasn't in any pain - I even saw him run down the stairs!! I think it might be the excitement of his birthday party today ;-)

We let Rafael open his gifts from us this morning so that Lela could be there too :-))

Rafael and his friend Joe had a combined party today at Wonderland Funpark. They invited 4 friends each, plus the 2 sisters. 12 was a good number for us parents to watch ;-) 

As expected, the boys ran around like crazy, from one ride to another. Rafael got very upset as he wasn't tall enough to ride the dodgem cars on his own :-( By the end of the day, he was riding with his friends, over and over and having a blast!

They also got to watch an illusion show which was very cleaver and funny :-)

A wonderful company called Naughty Nush Smash Cakes kindly donated the birthday cake. It's a chocolate piñata, full of lollies. They even put in an extra mallet for Joe to smash it too!! Everyone loved it - no leftover cake to go to waste ;-) 

Rafael received many amazing gifts - his favourite - a 6 month membership for Club Penguin!!! :-)))























23rd March 2013

Rafael's soccer club held a 3 game tournament today. Rafa was a little interested in trying to go, but he really wasn't well enough. He's still in pain and not walking much :-( 

Dom had to go, as he's the coach, and was able to tell Rafa all about it when he got home :-)

22nd March 2013

Another day off school for Rafa as he's still radioactive.

Not that he's well enough to go anyway, but he still complained that he'd miss school :-(

Dom slept with Rafael last night and he woke up about 3 am needing more Ibuprofen :-(

We have kept up the medicine throughout the day and he's doing ok. He's been watching a lot of tv or playing on his computer. 

21st March 2013

This morning Rafael stared of complaining of pain in his lower back. I kept asking him to take Panadol and he refused. After a while, I came up with a "sneaky Mummy" way of persuasion - I told him that there was an easy, quick fix for his pain. I could take him to see Dr Reid (GP) and he could give him a needle that would make the pain go away ;-) Of course, Rafa hated that suggestion and agreed to take some Panadol - later.

After posting on Facebook, another NB Dad replied saying that hot/cold packs often work well for his son. I dug out our heat pack from the laundry, popped it in the microwave and Rafael loved it, he could feel the relief straight away :-)

He was very sore and tired today, could hardly walk or sit. He laid in bed for a long time, I thought he might doze off ;-)

Dom ened up coming home from work after lunch, he said that he was on auto pilot and just got up in the morning and went to work. Once he was there, he said "What am I doing here? Why aren't I at home iwth my son?" :-(

By the time Dom arrived, Rafael was asking me for Panadol as the heat pack wasn't enough. After that, we were able to give him a dose every 3 hours and alternated that with Ibuprofen every 4 hours - whew!!

It's awful to see him in pain, and trying to be too strong and too brave about it :-(


20th March 2013

Things went surprisingly smoothly today :-)

The room on the 9th floor was ready by lunch time and Rafael was ensconced on the bed with his new laptop and oblivious to what was going on!

Yesterday at school, his teacher helped a lot by giving Rafael a sticker for every bottle of water he finished! He received 4 stickers :-)

That made getting the canulla i today a breeze! 1st attempt and Jessy nailed it ;-)

The amino acid infusion started just after 1pm. Dr Tim came today to give the radiation. They gave a much higher dose than normal, plus added another type called Yttrium. He had ~ 5 Gbq of Lutetium and 1 Gbq of Yttrium. It was all in one syringe. Dr Tim had to slow it down a few times as Rafael was starting to feel sick :-(

All went well after that and we just had to wait for the 4 hours of amino acid to finish.

Prof Hicks managed to pop up and have a chat with us too. The meeting about Rafael had happened at RCH today, and he said that he would speak to Dr Peter and let us know what the plan is next. It seems that he is thinking of giving the same radiation again in 6 weeks time, depending on how Rafael's blood counts go. If they really crash from this, then he'll need to have a stem cell rescue :-(


18th March 2013


We had a busy day at 2 hospitals.

RCH 1st for a dental check up. While we were there, we went up to the oncology floor and managed to get a slip signed for Rafael to have his urine checked for NB.

We also got in touch with our new social worker (as the other had left and we didn't know!).

She came down to meet us while we waited for dental. Had a good chat to her and was nice to meet her and have someone to touch base with.

Then we headed over to Peter Mac for a "nothing" meeting. We didn't even go in a room, just sat in the chairs waiting outside Nuclear medicine. Prof Hicks came to chat and said that Rafael's blood counts from Friday were all good. He said we didn't need to see the other doctor, but had to see Jessy so that she could "see" Rafael!! Bureaucracy at it's best ;-) 

We managed to get out of there with enough time to pick up Gabriela from school :-)











15th March 2013

Really bad news today :-((( The scan was just awful, the worst we've seen in years!!

Back track a bit - while we were waiting to see Rod after the scan, the nurse came out and said he'd requested a blood test. We've never, ever had a blood test done at Peter Mac!! Straight away I knew it was ominous.

They struggled today to get the cannula into Rafael's arm, missed the vein totally on the 1st attempt. Then they called Mark down from Nuclear medicine and he managed to get it in, but on a spot that Rafael had no Angel cream on, so he felt the whole thing and it made him cry :-((

We were waiting for them to take the cannula out so tht we coudl go get some lunch before meeting Rod. Oce again, it took them 2 goes at getting blood out!!

As we were about to leave, Rod called us in. Poor Rafa was starving!! Rod found some giant Freddo Frogs in his draw and gave the to Rafa :-)

After the usual chit chat, how are you etc, Rod looked at me and said "You were right, you knew something was going on" :-((

He talked a bit about the scan and then explained the treatment he wants to try. He had already spoken to Dr Peter :-)

I asked him if I could see the scan and he said "Are you sure you want to?" I looked at Dom and said "I want to see" and so did Dom.

He took us next door to see it on another computer. I can see why Rafael is in pain and was limping, his whole right leg is black inside ;-( His whole spine is black, he has 2 new tumours in both shoulders and all along the edge of his skull :-(

The plan is to have Lutetium AND Yttrium next Wednesday. They can give a much higher dose as he has a lot of disease and the expectation is that most of the radiation will be taken up by disease and not be secreted through his kidneys which aren't coping with the treatment very well. His GFR is now down to 49.

Also, on Wednesdays, the doctors at RCH have a meeting to discuss patients and Peter has put Rafael on the list. What Rod wants to do is high dose MIBG therapy, with a chemo (maybe Topotecan) and then give Rafael his stem cell return.

His stem cells are still frozen from his frontline treatment.

We are in shock, although I was expecting something, based on his symptoms, I was not expecting NB to take over like this so quickly! Even though I've seen the beast do it many times before in other children :-(

We have to go to RCH on Monday for a dental appointment and I'll get in touch with the Social worker while I'm there. Rod has also asked for Rafael to have another urine catecholamine test to see what's up??

Then we have to go across to Peter Mac for the bureaucracy part - tick the boxes and sign a form! ;-)

We have been inundated with calls, messages and Facebook posts.

For a while, Rafael has been asking for a laptop. 

We left Peter Mac, went straight to a shop and he bought a MacBook Air with the money that was donated from Pinnacle Medical Centre Ball :-))) He was so HAPPY!!! 






12th March 2013

Peter Mac called to say they can squeeze Rafael in at 9:30 am on Friday for his scan :-))

11th March 2013

Rafael was his normal, running self to day and bounded off to school, telling us he wasn't in any pain ??? Is he getting used to the pain? Is he hiding it? Is he too brave? Or has it just gone???

10th March 2013

I am on a SIN trip, this time to bring Prof Hicks home form his 'round the world trip :-)

I spoke to Dom before I left the hotel and he said that Rafael's leg was worse and that he's started limping :-(

When Rod got on board, he had already been upgraded to First Class by Qantas :-) :-)

I was there waiting to tell him the latest development and he was already formulating a plan about what to do next if scan wasn't great.

8th March 2013

Rafael was saying the pain wasn't as bad today, but I emailed Rod anyway. The doctors always talk about becoming symptomatic and I wonder if this is what it is??

Rod said that he's get Rafael in earlier for his GaPET scan, sometime next week.

7th March 2013

Rafael woke up today complaining of pain in his leg. I asked him to describe it and he pointed to his right leg and said "It's hard to show as it's down deep inside here" My heart just sank .... that's the exact same spot where he's had that stubborn tumour since diagnosis :-(

He said the pain is worse in the mornings.

6th March 2013

When I went to tuck Gabriela into bed, she said to me "Rafael told me that he is going to die" :-(( I wasn't expecting that!! Not sure where it came from or in what context he said it??? :-(