Blog: October 2014

31^st October

The wheels are in motion!!!

Emails are being exchanged and we can rest a little easier now while we wait xxx

30th October

More blood and platelet transfusions today :-(

29th October

Yeah, 2 weeks away from the hospital

Another meeting with Dr Michael, and Plan A has been scrapped :-( 

Thankfully we have Plan B!!!

We wrote Dr Michael a lengthy email last week, stating our concerns and frustrations at the 4-month delay in Rafael's treatment. He was overseas at a conference and didn't reply :-( 

Last week Rafa needed around the clock Nurofen for the pain in his leg. He hasn't had any since Saturday :-) 

We know that his disease is progressing, all of his scans in July showed that. Yet here we are, the end of October and we are still waiting for RCH to approve the high dose mIBG therapy in Sydney :-(

The time for waiting passed months ago, and especially now that Rafael is in pain and becoming symptomatic!

Today was the 1st chance we've had to sit down with Dr Michael and discuss our real options. I have been emailing Peter Mac over the last 2 weeks as well to find out all of our options there, as well as another Mum from NSW, whose daughter was just declined by Westmead due to her disease progressing :-(

Our concerns about hinging all of our hopes on Westmead are numerous:

They require a new mIBG scan before treatment and since we know his disease is progressing, they might still decline Rafael.

He would have to stay by himself in a lead lined room for 7 days. Although we as his carers, would have limited access, most of the time we'd be using video and audio to communicate.

We have to pay for a hotel in Sydney for 1 of us the whole time, as well as paying for flights from Melbourne, that need to be flexible - aka - the most expensive ;-)

During ALL of the MIBG therapy conversations, we have kept going back to the Peter Mac option of using 3 x medium dose @ 8Gbq.

To us lay people; this equals 24 Gbq as opposed to Westmead, which will be 1 X 18 Gbq.

We have spoken to Rod and the Mum from NSW spoke to a world expert and BOTH state that there is NO evidence to suggest 1 X 18 is any better than 3 X 8!!!

We prefer the Peter Mac option as we can stay in Melbourne, Rafael knows the hospital and the staff and we don't have to be away from Gabriela for a week either.

Last night Dr Michael received news from RCH that they would NOT approve the mIBG therapy in Sydney :-( :-( 

That is a battle for another day! 

We said that we know we could fundraise $30,000 if we really need to do this!! However, we made it perfectly clear to Dr Michael that we aren't considering Sydney as our first option anymore!

What does it mean for Rafael????

The doctor in Sydney actually emailed us today saying that if RCH approval is not given by 13th Nov, there won't be a chance of doing it until the New Year! RCH might approve, one day, but Michael has to "prove" a lot more to them! And it will definitely NOT be approved before 13/11 :-( 

Last week, Rafael caught this awful virus at school and hasn't been back since. Today, we were shocked to see that his blood counts were all really low and also, that he is neutropenic - hasn't enough white cells to fight infection :-( As Dr Michael said "He's chewing through platelets!" (Hb = 89, Pl = 12 & Neut = 0.23) Rafael also lost 1 kg in the last 2 weeks :-( I guess that happens when you live on ice cream :-(

2 weeks ago, the plan was to start a different cycle of chemotherapy next week, but his counts are way too low. Rafael & I will spend all day at RCH getting blood & platelet transfusions :-( The virus he has is causing this drop, but geez - it's a lot and so unexpected! If Rafael gets a fever tomorrow we know he will be admitted :-( Let's hope for NO fevers!!

Now the emails begin again! Dr Michael is going overseas tomorrow - again!!! A lot needs to be sorted out, but at least now he is onboard with the Peter Mac option (no other choice for him) and now that Rod is involved, he'll get things going.

Rafael will need a stem cell return after his last dose of mIBG and that date will be required to actually start the treatment, they count backwards.

He will then go on to have high dose chemotherapy and then his remaining stem cells returned. Our hopes and wishes are that he gets to a state where his body will cope with immunotherapy!

RCH are getting off lightly, for now! All of this cost will go to Peter Mac and we are eternally grateful for them! We love Peter Mac, they are not asking us for 1 cent!

So, no really good news, but we have a new plan, one that Dom & I are much happier with, but the W A I T I N G is driving us crazy!!!!

14th October

Today Rafael needed both a blood and platelet transfusion, it was a very long day for us.

We also met with Dr Michael, still trying to nut out a new plan!! So much talking, but no action!!

13th October

Rafael received this Merit award at school today.

12th October

PEG injection to help his White Cell Count recover

10th October

Chemo

9th October

Chemo

8th October

Zolodronic acid infusion today. It’s very quick, just 20 minutes plus a flush as well as chemo.

7th October

Chemo

6th October

Another round of chemo started today as well and another fight with Rafael to take the Temozolomide pills!!

3rd October

Specialist clinic with Dr X to order next dose of Zolodronic acid.

She asked what Rafael’s thyroid function was. I said we’ve neve had it tested! She couldn’t believe it! We had to go back downstairs for another special blood test before heading home.

I called her in the evening and she said that his function is low and that he will now have to take a tablet everyday! I haven’t told him yet