Rafael has had a very bad week :-(
On Monday night, he started complaining of pain across his skull and in his neck.
We started him on Panadol and Nurofen every 6 hours.
Then the pain stopped Rafael from being able to turn his head at all and we had to up the medicine to every 4 hours.
I contacted Prof Hicks, who re checked the scan (that he'd only had the week before!) and he confirmed there was nothing focal on the scan that could point to tumours causing the pain.
In his words: "I think that he is getting bone marrow expansion in the skull, which happens when the central bone marrow space (primarily in the spine) is replaced by tumour and then secondarily damaged by the combination of direct radiation from the PRRT and chemotherapy. Unfortunately active marrow expansion is often painful. "
Rafael spent many days on the sofa and couldn't move much.
On Thursday, he seemed well enough to go back to school, but 1/2 way there, vomited all over himself :-( Thankfully Dom was close to a friends house and they looked after Rafael and got him a change of clothes while he waited for me to arrive.
On Friday Rafa seemed to turn a corner, he didn't need the medicine as often and was able to move a lot better :-))
26th July 2013
Emily from Peter Mac called yesterday to squeeze Rafael in for a scan today - Rod must have clicked his fingers again ;-)
This time Rafael had the tracer through his port, so no canulla!! :-)
I was talking to Dr Tim in the hall way and the technician came to get Rafael to start the scan. Rafa is so used to it now, he just went off on his own, got sorted and they started the scan while I was still outside chatting ;-)
We met Rod afterwards. The scan shows much improvement on most of the sites from March. There are some new ones, but not many. His spine, especially, has cleared a lot :-)
Rod "believes" it's probably due to the PRRT, however, as there was no scan done before chemo started, we'll never know exactly.
24th July 2013
We met with Dr Sullivan again he agreed that we need to do another Gatate scan, before we can look into further treatment. He wrote the referral then and I emailed it straight off to Rod as soon as I got home.
17th July 2013
As expected, Rafael needed a blood transfusion today :-(
Dom came with me and worked from the hospital.
Our appointment with Dr Sullivan moved to Day Oncology and he sat with us and we had a good talk and started "nutting out" a new plan.
He is still waiting for some results to come back and he hasn't seen the MIBG scan yet.
16th July 2013
Rafael's first day back at school!! He was so happy to see all his friends. He wore his beanie into school, took it off in the classroom and that was that - no stress ;-)
The puppets from Camp Quality went to his school today to do their show about kids with cancer and how to treat your friends. It's site funny :-)
15th July 2013
Last day of school holidays ;-)
We took Rafa to the local hospital for his blood test today as we couldn't be bothered driving all the way to RCH ;-) Probably should have - the queue was huge!!
10th July 2013
L O N G day for us - 2 hospitals and 4 tests!!
As planned, we went to Peter Mac bright and early. My friend Peter met us and spent the day with us - that was awesome!
The scan was easy, Rafael is a pro now, he lay's there perfectly still :-)
We had a couple of hours gap before we needed to be at RCH, so we drove to South Melbourne and took a look at The Block (from the tv show).
At RCH, everything was running behind time - as usual :-( They needed to give Rafael a quick 5 minute SPECT scan so that RCH could bill us for the "scan" even though it was done at Peter Mac. They told me the tracer costs $2000!!! They couldn't fit us in until the afternoon.
Dr Sullivan was really late and called us in at 2:55pm and I said "we need to be in Echo in 5 minutes" He didn't laugh ;-)
Rafael's blood counts are slowly starting to rise :-)
For a while there, they thought that Rafael might have MDS (pre leukaemia) !!! We were so anxious about those results! Anyway - he doesn't!!! :-))) The translocation is on the neuroblastoma cells lines :-)
We made it down to echo very late, where Rafael had an ultrasound of his heart to compare to the one he had at the diagnosis.
After that, we finally got in to Nuc Med and literally had a 5 minute scan :-)))
We had a good day though, the children have lot's of fun with Peter :-)
9th July 2013
Rafael had 2 appointments today. He had his port accessed for the blood tests that follow the GFR tracer. Then we went downstairs to Nuc Med and he had to have a put in his arm too :-( They cannot use the same line to draw blood that the tracer was injected :-( It's school holidays and Gabriela was able to spend the whole day with us, having lot's of fun - not ;-)
The blood tests are done 1 1/2 and 3 hours after the tracer, so it was a long day, but we managed to get a quiet room in day onc and they just watched tv :-)
After that, we had to go back to Nuc Med for the MIBG tracer to be injected.
8th July 2013
Duncan from Nuclear medicine at RCH called me today to say they'd be doing things a little differently with this MIBG scan. At RCH, the machine is SPECT, whereas at Peter Mac, it's SPECT/CT. Since we've almost had all scans at Peter Mac, it's a better option to go there. Amazingly, they managed to fit us in at 9:30 on Wednesday :-)
9th July 2013
Gabriela and Rafael took 2 of their friends to the annual Challenge sleep over at the Hitlon Hotel :-) Not sure how much sleep they'll get :-)
6th July 2013
Rafa started taking Iodine drops today as a precaution for the MIBG scan. It's to protect his thyroid. It's pure Iodine and he had to drink it mixed with juice - he said it tastes disgusting!!!
5th July 2013
I emailed the doctors yesterday about Rafael's ALT (liver) count on his blood results, over the last weeks, it's been rising a lot and no one has mentioned it to us :-(( No one replied !@#!
Jayne, our nurse coordinator called me to say they've booked Rafael in for a kidney function test (GFR) and a MIBG scan next week.
Although we don't do MIBG scans, we knew that this new doctor was going to push for one as he's like all the other docs - "what's a Gatate??" Also, for Rafael to qualify for any clinical trials, he needs to have one anyway.
So we'll go with the flow this time and then push for Gatate's later.
I called Peter Mac and spoke to Dr Tim as I was really worried about the ALT! He was lovely and we had a long chat. As none of the other liver function results are elevated, he "thinks" it's probably chemo toxicity related.
4th July 2013
Gabriela has a slight cold and I couldn't risk taking her to the oncology floor today, so Nanna slept over to look after her :-)
Traffic wasn't too bad and we were at Day Oncology before 8 am :-) Platelets had already been ordered :-)
Day surgery were waiting for us to finish to head up. This time Rafael decided not to use the mask, as his port was already accessed. They put the drugs through his line and they made him cry :-( Not sure why, strange feeling I guess??
The procedure was over in about 20 minutes and we waited for Rafael to be slowly woke from his anaesthesia :-)
He woke up happy and ate 2 ice cream tubs :-) He was in pain though, and the nurse convinced him to take some Panadol.
2nd July 2013
Gabriela and I made it home after travelling for 34 hours!!! Boys were happy to see us and vice versa ;-)
1st July 2013
Dom took Rafael in today for blood test and also a meeting with Dr Michael.
Platelets were down to 22, but as they had already booked Rafael in for Bone Marrow aspirates on Thursday, they said he could hold off on a transfusion until Thurs morning, before the surgery. :-))
