Blog: April 2011

30th April 2011

Gabriela and Rafael enjoyed Easter again this year :-))

Rafael wrote a letter to the Easter Bunny and explained that I was going to work on Sunday and if possible, could he please come on Saturday instead? and ps: Please don't bring too much chocolate ;-) - TOO cute!!!

So, when Rafa woke up on Saturday, he was VERY happy to see a trail of eggs going down the stairs. We went back up to wake up Lela, who took a few minutes to get going ;-)

The weather here has been perfect, mild sunny days, between 20 - 23 C. We have been spending a lot of time outside, especially Rafa, who wants to play soccer non stop!

I left for a 6 day LA trip early on Sunday when everyone was still sound asleep zzzzz

Dom took them to the movies to see 'Rio' , which they really enjoyed!!

On Monday they went to the pool and spent a long time there playing.

Tuesday was the last day of school holidays :-( I think they had to get everything ready for the next day and try to go to sleep at a decent time ;-) LOL

They were happy to be back at school and see all of their friends again :-) Rafael was straight back into playing soccer with his friends - before school, at play time and at lunch time :-))

Gabriela was class captain for the short week, but she was very proud :-)

Next week she is going to Grade 3 camp, which is 3 days away at an eco learning lodge in Anglesea. I know that she will be fine, staying away for 2 nights, but some of the children in her class have never been away for even 1 night, so I can imagine a bit of stress and tears on Wednesday morning when they leave ;-)

I have another busy week ahead and then my new roster starts and I am very happy with it!! I will be working part time for the next 2 years (ish) and the roster I got was 1 trip every 2 weeks!! Yeah - so happy :-)))

23rd April 2011

Good news!! Scans reviewed and it was his pituitary!! What Dr Peter saw on MRI was an area of the sinus. Spot in skull we've since since PET's started in Dec 2009 - gone!!! I ♥ Rafael's team :)))) xxx 

We can all breathe again :) I have to update more thoroughly, but I'm off to LA in the morning and just wanted this done ;-)) Prof Hicks email is very well put ;-))) xxx

14th April 2011

Sorry for the slow updates!! believe it ro not, we still don't have any news :-(

We met Peter last Friday and he ordered an MRI as quickly as possible. That ended up being on Monday morning at 8 am - great 1st day of school holidays ;-)

Rafael did very well and laid perfectly still during the 20 min scan of his head.

Peter was at Monash on Monday, but he went to RCH in the evening to look at the MRI. There was no official report :-( He thought he could see something in the bone near the pituitary gland.

Rod arrived back on Tuesday and he thought the PET scan showed that rafael had moved.

After much discussion and debate, they have decided to send the MRI images to Peter Mac so that they can be superimposed onto the PET for comparison.

How long does that take??? I don't know, but we are still waiting!! We are breathing a bit easier, for now, as we do trust Rod and Peter. They both want to get the most accurate answer.

Rafael and Gabriela are at tennis camp this week and they are loving it :-) 

xxx

April 7th 2011

On Tuesday, Rafael had a CT and a GFR (kidney function test at RCH. He ended up having 5 canula's for the 2 he needed!! 2 blown and 1 useless :-( He was so brave, especially as 2 of them were without any numbing cream at all!!

Today we went to peter Mac for his Gallium PET scan

Prof Hicks is away at the moment, so we saw another doctor, Dr Tim, for review after Rafael's scan.

He has been working at MSK for the last 13 years and knows a lot about NB too :-)

Domingos and I were expecting to walk in and have it all as a "formality" and head off to our appt with Dr Peter tomorrow.

When we sat down he said "there's something on the scan"!!! We haven't heard those kind of words for nearly 3 years :-(

On the screen, they had an image from his last Ga PET in Oct '10 and todays scan. Rafael has been having Ga PET scans since Dec '09 and they have always showed a spot of NB in his skull bones, where bone marrow is produced. Throughout last year's radionuclide therapy, each scan has shown that spot to be fainter and fainter. Last scan was virtually invisible. A tiny pin prick of black.

Well, today, that same spot was a big black blob :-((( We were stunned, speechless :-( Rafael was happily playing games on my iPad and was non the wiser ;-)

Then Dr Tim starts talking about different treatment options!! The main issue is that it's a localised area and if they use a "broad spectrum" treatment, it will also affect other organs of his body. Dr Tim's "best" option is to go to Boston for proton therapy!! What the??????

All I'm thinking is "Rod - where are you????????????"

I emailed Rod and Peter later on, and believe it or not, within 1/2hr, Rod had replied - from France!! He is back next Tuesday and wants us to wait until then, if poss. OK - deep breathe, what's a few days??

THEN, when I get home from school pick up, my phone rings - it's Dr Tim! He says " we have been having a heated discussion here all day about Rafael's scan result! OK?? Cut a long story short - there IS HOPE!!!

He believes it's NB, another Dr thinks that it's movement on the scan and another is undecided ;-)

Therefore, they are suggesting either an MRI or another Ga PET of the head only to compare! Logical hey?

So it may take some maneuvering to get 1 of those scans asap, we will be at RCH tomorrow, meeting with Dr Peter, begging for it to be bumped up everyone's list ;-) In one sense we are lucky - we have 2 different hospitals who can "fight" to slot us in ;-)))

So, no news in good news! Do we believe it's a false positive??? I don't know. The image was so clear to me - yet I'm not a doctor, and if 3 of them cannot agree .....

Until tomorrow ....

xxx