28th October 2011
We had to take Rafael into ER today. As soon as the doctors saw the site, they all agreed that the tube had to be taken out – today! He would have a local and all would be fine – except … some other doctor decided that Rafael would need a general instead, and there was no way they could fit him in that day!! We were so annoyed! They placed Rafael on an elective surgery list and told us that it could take 2 – 4 weeks to get in – arghh!!
27th October 2011
Had to take Rafael to GP to have a look at his chest tube infection. It was red and weeping, infection was setting in. Dr Reid thought that he could probably remove the tube in his practice with a local anesthesia. However, he asked for an ultrasound 1st to have a better look under the skin. He started antibiotics tonight. He kept knocking it at school and it kept bleeding.
20th October 2011
I emailed Dr Peter today, he only has the interim urine test results, but the important one, HVA/Creatanine is in the normal range - fantastic news!!!
19th October 2011
Last night Rafael woke up about 10pm complaining of pain in his tummy and groin. Dom gave him some nurofen and after that he was fine. When he woke up this morning he was complaining of pain in his leg :-( This means that the Indium is working!
Rafael laid perfectly still today for his 2 scans. We had to wait about an hour after to see Rod. Only 2 spots showed on those scans, shoulder and groin. And now we have to wait!! Arghh!! 3 months until the next scan - breathe, breathe ....
19th October 2011
After I dropped Lela at school I drove into the hospital. Rafael was happy and in a good mood :-)
We only had to wait to lunch time to be discharged - woohoo.
I still had some time on the parking meter, so we took him for another run through the Fitzroy Gardens :-)
18th October 2011
Dose #4 of Indium administered at 2pm :-) As usual, it was a long morning of sitting around and waiting, but all went smoothly. Rafael asked for the nurse Dale to come and do his canulla and once again, she got it in 1st go - pain free :-))
For my records - this dose was 5.4
After I left, Rod paid a visit to the room. He had a brief chat and Dom told me that he thinks an MRI will probably show a bit more disease, probably marrow, but he doesn't really think it's necessary.
I ran into Dr Paul Wood again and we had a good chat too. His research is ALL Neuroblastoma :-))
15th October 2011
Gabriela and Rafael went to Little Athletics today for a trial. At 1st, Rafael was adamant that he just wanted to watch, not try anything. He is in the Under 8's and the boys are all so much bigger than him :-(
His 1st event was Triple Jump and he watched and learnt and got up when it was his turn. After that, he went in every event! We were very surprised to see him run 200m and then a 400m - he didn't even stop, or try to walk!!! They both loved the day and can't wait to go back next week :-)
October 13, 2011
The meting with Dr Peter went better than expected :-) The good news is that he doesn't want to do any chemo at this stage ;-)
He is a bit weary of the Ga PET scan, as the pictures he got from Rod were very grainy and unclear. He has not seen the spots in vivid flouro like us :-( He wants Rafael to have an MRI to compare. We also re did the urine test and should get those results next week. He is happy for Rafael to have the 4th dose of Indium and we will see him again in 6 weeks.
7th October 2011
Rafael had his scan yesterday. We are VERY lucky that he is in the "right" place and able to have this very specific scan - Gallium PET.
Prof Hicks knew we were waiting, but he kept us waiting a long time - more than an hour. When he called us in, he said the children could stay outside if they wanted, but they followed us in. Dr Grace was also in the room and so was Mark, from the nuclear medicine team. Already, my mind was racing, wondering what was going on.
The good news is that the Indium treatments Rafael had last year have worked and ALL of those spots are gone :-)))))
The bad news is - there are 5 new spots :-((( It was devastating to have it confirmed, even though I had that "little feeling". They are all new area and only in bones.
More amazing is the fact that the CT did not show 4 of them at all, just the GaPET detected them - thank God for that!!
Rafael is booked in to have another does of Indium on Tuesday 18th October and we have a meeting with Dr Peter next Thursday. My "guess" is that some form of chemotherapy will be needed :-(((
Prof Hicks is such a nice person - you could see how upset he was to tell us :-((( I think we took it much better than he expected!!
xxx
5th October 2011
Hi there!!
We are back from our awesome holiday to Los Cabos, Mexico!!!
Tomorrow we are off to Peter Mac for Rafael's long awaited scan. I am feeling more nervous than usual, as he has been complaining of lots of aches and pains lately – more than usual :-( However, I’m trying to not read too much into it!!!
What will be, will be ……
All the rushing around to get his urine test done before we left was a waste of time :-( The stupid idiots at the pathology lab wouldn’t do the test because it wasn’t a 24hr collection!! They just disregarded the whole thing! Rafael doesn’t need a 24hr collection – just a one off pee in a jar – arghhhh!!!! Now I need to get that sorted – again :(
And now – to make you all jealous, you can read about our time in Mexico ;-)
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19th September 2011
We had to get up at 2:45 am!! Ouch ;-) The flights were all full and as expected, we had to fly via Auckland instead of direct :( That put us in LA 1 hour earlier than planned, so we had heaps of time to get across to American Airlines. That flight was full too, but the check in guy told us they usually have no shows :) We got on, no probs and even had a whole row of 6 seats to ourselves!!! I slept most of that flight ;-)
Flying over Baja California Sur was beautiful, it’s all desert, very dry and the Sea of Cortez is an amazing shade of blue.
It was very hot when we arrived, we managed to get another night booked at our hotel, and we checked in and headed straight to the pool!! I don’t think we left it again for the next 9 days ;-)
Our hotel was all inclusive, so we made the most of the swim up bar ;-)
G & R enjoyed making crafts at the kids club and they loved the mini water park with it’s water slides and toboggan run!
23rd September 2011
Was my birthday and we woke G & R up early to head off for our surprise tour! They had no idea what was happening ;-) We told them – “we are all going to swim with dolphins!!!”
We were in a group of 8 and our dolphins name was Ukalai. We got in the water with her and she swam past us a lot so we could feel her, then she did lots of tricks, took us each for a swim, gave us kisses and posed for photos!!!
A truly memorable experience!!!
That night we ate dinner in the Italian restaurant and went to the theatre to watch a dance show.
G & R loved all of the nightly shows!! They even go to meet “Lady Gaga”
24th September 2011
We hired a car for 24 hours and drove into Cabo San Lucas for some shopping and dinner. Once we arrived there and started walking around, we nearly melted!! It was so much hotter there :(
We walked along the marina looking for somewhere to eat and were convinced by 1 restaurant when they said these magic words “we have air conditioning!!”
25th September 2011
Headed out in the car again. Most of the beaches in Los Cabos are unswimmable due to the VERY strong rips :(
Chileno Beach is considered safe for swimming. Once again, it was very hot. The water was rougher than we expected, but safe enough, as long as we were in the water with the children all the time. G & R got dumped spectacularly a few times – me too!! Our bathers were full of sand! !!
The water was very warm and crystal clear, but so rough! We decided to leave and try Medano Beach as well. Surprisingly, Rafa didn’t want to leave, he was having so much fun!!
By the time we got to Medano, it was high tide and closed for swimming as the ocean was too rough :(
What to do??? Head back to the hotel and go to the pool!!!
28th September
Sadly we had to leave our beautiful hotel :( Gabriela and Rafael were sad to say goodbye to their holiday friends :(
Once again we were lucky with the flight and had another row of 6 seats to ourselves!!!
It only rains in Los Cabos about 5 days per year and it was raining as we left!!
29th September 2011
Shopping up a storm at an outlet mall in Los Angeles. Gabriela went crazy in Justice ;-) All Rafa wanted was a pair of shorts! He was more than happy with his Lego purchases :-)))
2nd October 2011
Arrived home after a very long night at LAX airport, waiting until the last minute to see if we’d get seats on the flight! We weren’t seated together, but we did get on – whew!!
Happy to be home :-)) Gabriela and Rafael are already asking when we can go back???!!!
