30th January 2012
Rafael is showing no signs of illness or side effects!!! He has been out riding his bike around the street, he has lot’s of energy, but doesn’t eat much of anything these days :-(
27th January 2012
MRI went well, they even managed to get in a little early. There was some issues with the cannula, as they could not use the 2 sites that Peter Mac had used on Tuesday. Rafael has some nice bruises on his hands now :-(
Gabriela was lucky to stay behind with Nanna this time ;-)
Rafael laid as still as he could and watched Star Wars. I think it took about 2 hours this time.
We have an appt with Dr Peter next Friday and we’ll talk about the scan then.
26th January 2012
Happy Australia Day!!!
Yesterday Domingos bought Rafael a new bike :-))) Yeah – he finally has one that is his size!!
Today they went for a big ride, half way to Altona, from our house. Apparently they wanted to ride all the way, but Mingo had to remind them that then they’d have to ride all the way back too!!!
There was one big hill, and he warned the children about going slow and using their brakes. Rafael still managed to have a massive tumble over the handle bars!! He scraped his elbow very badly and has bruises all over!!
25th January 2012
I headed off to work as planned, Rafael was even awake and up before I left :-))
RCH called Dom in the morning to say they had booked Rafael’s MRI on Friday afternoon.
Mingo took him to Peter Mac in the afternoon for his “quick” 45 min scan. The whole visit took over 2 hours! Gabriela was bored out of her mind :-(
Afterwards he met Dr Michael and he showed Mingo all the areas that the Lutetium had been taken up by. All looked good!!
24th January 2012
As usual, nothing goes without a hiccup !
RCH booked Rafael in for a GFR today, but of course, he couldn’t do that as he’s at Peter Mac! Therefore, the Dr’s agreed that his last GFR result (79) would just have to suffice for now.
We got there at 10:30 as requested and were admitted to Ward 9 – even though this is a day procedure. Instead of Rafael being treated in the chemo outpatients area with all the “oldies”, he was given a room, because there had to be a pediatric nurse :-) Good for us and Rafa!!
While we were still waiting downstairs, Val came to us and said “Has anyone spoken to you yet?” Ummm “NO!” The Lutetium had arrived that morning from Holland, but it was stuck in customs at Melbourne airport due to paperwork – they had no idea what time it might arrive!
Rafael had to have 2 cannula’s today. Normally this treatment would be given through a port or central line. Since Rafa has neither, using IV lines was a bit trickier. We tracked down Dale, his super nurse and she was able to get them in, with only a few owies. However, she couldn’t get the larger needles in :-(
After lunch we were sent up to the ward, we settled in and waited.
The procedure is for amino acids to run for 3 hours to protect Rafael’s kidneys. The Lu177 itself is only a short 20 min infusion. Because Rafael had IV lines, the amino acids can cause pain and hives to the surrounding veins/skin and cause damage, therefore someone from Nuc Medicine had to stay at all times.
What we didn’t realize was that person today would be Prof Hicks and Val!! Once again, we were able to spend a lot of time with Rod, picking his brain and asking lots of questions :-)
They gave Rafael some IV anti-nausea medicine as well as some oral before they started the amino acid transfusion.
By 3pm, everything was underway! The Lu177 itself went quickly, we were too busy chatting to Rod and hardly noticed it.
Rod kept asking Rafael if he felt ok, if he had any pain in his arm. He’d been told before that he had to tell us straight away if he felt any pain.
Rafael was half watching Cars 2 and half the cricket. I think Rod enjoyed chatting to him about cricket players!
About 2 hours in, Rafael was starring at the movie and not really responding to my questions. I went closer to him on the bed and asked if he was alright? He looked at me and said his arm hurt! Yep – hives had broken out!!
Rod quickly disconnected the line and they were able to connect it to his other arm. They got some Voltaren and Rod couldn’t rub it on, as it’d aggravate the site, so he just left dobs of it along Rafael’s arm ;-)
After a bit more cricket and some tennis as well, Rod said that all was good and he headed off. We had to wait until 6pm for the amino acids to finish, but as they were running a bit faster than planned, we were out of there at 5:30pm! In fact, as the nurse was coming in to disconnect, we already had all our stuff packed on the bed – just waiting!
23rd January 2012
We were lucky today – Dr Peter was in the building, Dr John saw him and said “You need to see Rafael!”
Dr Peter had just received the report from Prof Hicks. Once again, he is a bit “skeptical” about what the scan shows. He is really “struggling” to understand that GaPET only shows NB cells – he wonders what else it could be??
He is also puzzled by the fact that Rafael is not presenting with ANY of the typical NB symptoms – pain, fever, sweating, raised urine levels etc???
He tried to call Prof Hicks while we were there to discuss a bit more. He did understand Rod’s report – get Rafael in and let’s try the Lutetium 177 while we can!! He agreed to go ahead with the treatment tomorrow.
However, Rafael needs to have another GFR done 1st for a baseline. His last one was April 2011.
Dr Peter has also ordered an MRI to see what it shows.
Rafael’s blood tests today were also normal.
After we got home, the phone and emails didn’t stop! As the afternoon wore on, it became clearer that both Peter Mac and Dr Peter had a sense of urgency about getting Rafael admitted tomorrow, as the next slot might not be for 6 weeks.
At 5:30pm it was confirmed :-)
I am meant to go to LA on Wednesday and I spoke to Val a lot about how Rafael would be and whether I should really go?? She said that if Rafael was going to get radiation sickness, it wouldn’t be until day 3 – 8. With Thursday being a public holiday here (Australia Day), I decided that I should go, otherwise I’d be owing Qantas the hours for weeks to come :-(
Mingo will take carer’s leave tomorrow and Wednesday and I’ll be back on Saturday morning.
19th January 2012
Well ..... not good news :-((( We are in such shock, as we really weren't expecting it!
The scan itself went well, Rafael laid perfectly still throughout and it was over very quickly :-)
We couldn't see Prof Hicks until after 12, so we went for a quick walk down the street to meet up with Dom.
Rod was his usual, kind mannered self. He had the scan open on the computer behind him, but we didn't realise THAT was Rafa until he showed us :-(
The 5 spots that he had in October are still there as well as MANY new ones - couldn't even count them all. 2 new ones in his skull, then all down his spine into his pelvis as well as both thigh bones! :-(( We didn't cry, I think we kind of didn't believe it :-((
We sat with Rod for 1 1/2 hours discussing many different options for further treatment. Unfortunately, I had to get Rafael to his hearing appointment in Werribee by 2:15, so we had to dash off about 1:45.
Rod was wonderful, he literally could have sat there all day and answered our questions. He's amazing!
The Indium dose that Rafael had in October appears to not have worked, therefore we won't be using that again (at this stage). Rod wants Rafael to start on Lutetium, which is another radionuclide therapy - same as Indium, just different chemical and radiation. The good thing about it is that it's done as outpatient!!! He could start as early as next Tuesday ....
However ...... Dr Peter is away until 1st Feb!!!!!! And we NEED to discuss all of this with him. Rod also needs permission from RCH.
Therefore, we are meeting with our original oncologist on Monday, Dr John Heath to discuss options. We think he will want to do a GFR (kidney function) test before we start as Lutetium does affect the kidney function. Given that we are only meeting him on Monday, I doubt that they'll give Rod the go ahead for Tuesday.
My guess is that it'll be the following Tuesday.
Rod also said that Lutetium, combined with 5FU chemotherapy work really well together, and he'd like to use it on Rafael - however, he needs ethics approval for that and wouldn't get it in time.
The Lutetium is usually given 6 - 8 weeks apart for 4 cycles. He is thinking of doing 2 on Rafael and then waiting a few months. Neither the Lutetium or chemo have any "real" side affects and Rafael will be able to continue life as normal.
Rod is very big on "quality of life!" :-)
We know that from the October scan, Dr Peter is a "bit cynical" about GaPET scans. We can't understand why, as they clearly show Rafael's disease and it's regression over the last 2 years. For it to start lighting up like Christmas trees, just shows their sensitivity!!
I found an article online that was recently published and Rod gave me the full text. It studied GaPET versus MIBG scans versus CT/MRI. Basically, GaPET detects much earlier and "later on" they all catch up to each other :-)
We have no idea what other treatments Dr Peter might suggest?? We have sort of been out of the oncology world for a couple of years and I don't know what trials they even have at RCH.
Let's see ... we just have to keep breathing!!!
17th January 2012
I can't believe it's only 3 weeks until school goes back :-(( However, I am looking forward to the sound of silence! Gosh, Gabriela and Rafael just seem to fight ALL day!!! ;-)
So, this week is scan week and we have been busy doing everything "normal" we can before then!
Gabriela had a wonderful trip to Brisbane with her friends. She swam in the pool everyday :-)
Rafael enjoyed his quiet time a of time with Daddy playing XBox :-)
We had a great New Year's Eve at a local friends house and the children loved to fireworks display :-)
Rafael had his dental appt at RCH last Wednesday.The dentist feels that his front teeth are taking too long to come through and he may need to have his gum cut to assist :-( The dentist wanted us to come back in a few weeks to see if his front teeth have moved at all, as well as come back in 3 months to have a coating put on his back molars. However, the earliest appt is in 3 months time!!!
So I've kept that appt and also made one with our own dentist for next week to get another opinion ;-)
After that, we went to see Alvin Chopwrecked. It was ok, they seemed to enjoy it. Mingo was in Sydney and he was glad not to see it as he hates the sound of their voices!!
Last Sunday we had Gabriela's belated birthday party. It was a great day and all enjoyed the rides :-) Pics to follow soon.
We are heading off to the beach today as the temp is going to be 35C, perfect :-))
The next few weeks we have so many appointments! Scan, 2 x hearing, dentist and Dr Peter! plus I need to get their haircut before school starts ;-))
Oh, I nearly forgot - Gabriela has to see an orthopaedic surgeon :-( She had an x-ray of her feet taken, and it shows that the bones in her big toes and mis shoed. That is why they are growing inwards (picture an old person with bunions!) However, they think it's ok, but want the surgeon to have a look and "guess" what they might be like as she grows and gets older. That appt is in February.
Happy New year to everyone xxx