Thursday, 9 February 2012

Blog: February 2012

29th February 2012

We left home at 6:30 to get to day surgery by 7:30. Once there, it took a while, then we found out that Rafael was last on the list and wouldn't even go in before 10 :-(( Poor darling was starving!! So we just wondered around the hospital, trying to avoid the food courts ;-)

I called Peter Mac to let them know there was no way we'd get there before 12pm!

Rafael went under really well, and the anaesthetist listened to us and read his plan - only problem was - it took him sooooo long to wake up! More than 1 hour before we were even called into recovery, then another hour before he was discharged! They got the PCC line in easily, took about 20 minutes.

They also placed a cannula in his arm and I asked it it could stay in for the GFR tomorrow - nope, they said it wasn't put in for that reason - arghh!!!

Finally got to Peter Mac at 2:30 and still had to wait about 20 minutes for anyone to see us :-( Poor Rafael still hadn't eaten or drunk anything!!

The advantage of getting there late was that we saw Prof Hicks instead of the paediatric team :-)) He understood that it was all bureaucracy, but needed to have all the boxes ticked :-(

28th February 2012

Argh!! So stressed these days :-( I hate feeling like this!

Last week, Tues and Wed were spent emailing doctors left, right and centre!

Rod said that he was facing some "challenges" getting 5FU approved and was looking into other options. Then Dr Peter said that Rafael will go on to oral Etoposide instead.

At that stage, we were still thinking it would just be for 3 days as was the plan for 5FU. Nope - wrong!! It turns out that it's a 3 week on, 1 week off schedule. Dr Peter's nurse said that it's capsules and Rafael will probably have nausea :-( We immediately started trying to teach Rafael how to swallow mini M & M's :-((

By Wednesday afternoon, I could feel my heart racing, my hands were shaking and I felt like I was about to burst into tears at any given moment - deep breathes ;-)

Dr Peter finally said, "I think you need to come in and have a face to face meeting". He had a slot at 10am on Friday and we grabbed it!!

In the mean time, Rafael's booking for PICC line insertion was confirmed for Wed 29th Feb and GFR (kidney function test) on Thurs 1st March.

It was great talking to Peter and all of what he said made sense - whew!! 5FU is an "unknown" with Neuroblastoma, so better to go with a chemo that he's had before = Etoposide. It's a very nasty chemo, however, Rafael will have a lower dose as it's 3 weeks continous. He did say that the pills are the size of horse tablets!!! I asked if he was going to come to our house every day to give it to Rafa??? ;-) He laughed! Thankfully we can get it in a liquid form.

It will be ready for us to pick up tomorrow when we are at RCH for the PICC line. Rafael will start next Monday, 3 weeks on, 1 week off for 2 cycles and that will bring us up to the next scheduled GaPET scan.

Today Peter Mac called to say that their own paediatric doctor needs to "see" Rafael before Tues!!! I explained that we'd be at RCH in the morning, but they still insisted that we come in tomorrow - grrrrr!!!

Rafael finished school today for the next 7 days - his schedule is crazy!! Also, we've never dealt with a PICC line before, so we decided not to send him to school on Friday anyway.

Wednesday 29th - PICC line insertion under G.A., pick up chemo from pharmacy, drive from RCH to Peter Mac to "talk"

Thursday 1st March - GFR

Monday 5th March - start oral Etoposide, on an empty stomach. Can be mixed with apple juice ;-)

Tuesday 6th March - 2nd dose of Lutetium at Peter Mac

Wednesday 7th March - scan at Peter Mac to check on Lutetium uptake

Got all that????

Dr Peter checked Rafael's blood results from the test he had last Tues. His WCC and Lymphocytes have gone up :-) But his platelets dropped more than 100 :-(( Insane!! And no real reason for it :-(

On Saturday morning, in the blistering heat, we went for an ~ 8 km bike ride to Altona!!! We were all so hot and bothered by the end, but we had lot's of fun and glad we did it!!

I went to an orientation meeting tonight for The Ride to Conquer Cancer :-)) Our team is doing really well!! We now have 2 riders, with a chance of at least 3 more - we are so excited about raising funds to help Peter Mac with their vital research!!! Our friend has designed a team logo - we love it!!


28th February 2012

First week of school is almost over!! Gabriela hasn't been having much fun with her bus - it takes FOREVER and she was being bullied :-(((

Today she spoke to the Deputy Head of school, and it was the first day she came home happy :-)))

Rafael is his usual self, having a blast with his friends :-)) His new hearing aides haven't been working very well, so I'll see how they go next week.

We met with Dr Peter last Friday and got the MRI results. Yep, it's starting to show up there :-( There were some spinal lesions that did correspond to those on the GaPET scan. However the ones in his skull still haven't shown.

So, slowly, Dr Peter has come to believe the 1st scan and Rafael's disease is progressing :-(

The plan is still the same, wait until the next Lu177 on 6th March, 3 days of 5FU chemo beforehand.

We haven't got that finalised yet, but he'll need to have a PICC line inserted the week before as well as have a kidney function test.

Dr Peter is still perplexed though - Rafael seems so well!! Every child he sees with progressing NB comes in sick - and he's not!!! :-))))))

Soccer training started this week (twice) and Rafael is in heaven!!! He loves it :-) Gabriela - so, so ;-)

We have finally got our team organised for the Ride to Conquer Cancer in October - Rafael's Warriors :-)

If you can support our team, or would like to join, the link is :

Paul Larkin is our friend, and he will be riding for us :-) Dom and I have both signed on as crew members, so we'll be working very hard that weekend too!!!

All funds raised go to research at Peter Mac!! Prof Hicks thought he might be able to ride for us, but alas, he'll be overseas :-(((

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