Last day of oral chemo. We are hoping that Rafael will learn to swallow pills on his own, but for now, we still have to push them to the back of his throat :-(
29th August 2013
I called the nurse in charge today as Rafael's pain is just so bad and out of control :-( He's having Panadol, Nurofen and Oxycodone every 4 - 6 hours but it's not helping. I was crying and so angry that no one is doing anything for Rafael's win :-(
Off to the ER we went again! And again - they called the Oncology Fellow to review Rafa :-( We really wanted a pain medicine specialist to look at him :-(
26th August 2013
Rafael started 5 days of oral temozolomide chemo today. However, we didn't pick it up until we were at RCH today, so this week we need to give it in the evening, 2 hours after he's eaten dinner :-(
He also had the Zoledronic Acid infusion. No reacts so far. The Dr said that most people usually get flu like symptoms after the 1st dose and feel really yucky for a few days :-(
21st August 2013
We met with Michael again today and he also arranged for us to meet an endocronologist who has been using Zol Acid for a long time at RCH.
She was a bit crazy and rushed and we had a quick chat. She won't use the higher dose that Michael was seeking, but managed to fit Rafael in next Monday. He will have a short 20 minute infusion every 3 months. Let's see how it goes???
19th August 2013
A quick clinic visit today to check that the steroids were helping and talk about some further chemo options. Michael came with a few print outs of trials into various combinations of metronomic chemo. That is chemo that is given in lower doses, more often (21 - 28 days). He has also been seeking approval from RCH to use a drug called Zoledronic Acid which is known to help with bon pain.
18th August 2013
Today Gabriela and Rafael made their First Holy Communion :-)
It is a year early for Rafa, but the Brothers said that he is ready and they really wanted him to do it if possible :-)
Thankfully Rafael's pain has completely gone and he was able to enjoy the day to the fullest.
The celebration Mass at the Church was really nice, and at one stage I saw that Rafael was crying :-(
Gabriela looked like a princess in her special dress and Rafael was so handsome in his 3 piece suit ;-)
We had a few family and friends over after for communion cake and coffee (aka - Champagne and beer!)
16th August 2013
We cannot believe the change in Rafa after only 1 dose of steroid!! We could see an improvement last night, a couple of hours after he took the dose, but this morning, he is SO much better!!
When I woke him at 6:30 for the Panadol, he spilt some water down his neck and he immediately sat up in bed and I could see on his face that he wasn't in pain like before :-(
Throughout the day, Rafa continued to improve, so much that he was finally able to have his BFF over after school for a play. He's not kicking soccer balls around the house - yet ;-)
Dr Sullivan surprised me by calling in the afternoon to check up on Rafa :-)
15th August 2013
Rafael woke us up at 5:30 this morning for more medicine :-( Then we realised he had a 39C fever :-((
Gabriela is sick too, she had a fever all night :-(
I called the nurse and she said that we probably do need to bring him in to the ER.
Dom and Rafael left just after 6am and I stayed with Lela until my mum arrived.
We had the appointment with Michael booked in at 1pm, so I didn't rush ;-)
Our main concern was Rafael's fever, as one thing Prof Hicks had said was stuck in our head - could the neck pain mean viral meningitis. Up until now, Rafael never had a fever with the pain, but he'd also been taking Panadol continuously :-(
The E.R. doctors were quickly able to rule it out :-)
They were concerned with his leg pain, as he can't bare and weight at all now. The pain is down the front of both legs :-(
They took some bloods, from his port and he wasn't happy about that :-(
They discharged us to go upstairs and we had to use a wheelchair, as Dom couldn't carry Rafael all the time.
Rafael's photo is in today's newspaper and the nurses were very envious!!! They wanted to know why the interview was at Peter Mac and why he didn't inset on bringing Matt Le Nevez to RCH instead ;-)
We had a long talk with Michael, he examined Rafael thoroughly and prescribed a 4 days course of steroids to reduce the pain. Rafael rolled over on the bed and went to sleep!! Long, hard day for our warrior :-( :-( :-(
Michael's next plan is to get approval to give Rafael Zoledronic acid to help with the bone pain. It was developed for osteoporosis, but also works against cancer - that's a bonus. Some clinical trials are incorporating this drug at the moment.
As for chemo, he wants to try metronomic chemotherapy. This is lower doses of chemo, usually well tolerated, given over a 3 week period, then repeated.
As I said before, he wants to try Irino and Temo. It is a regime that is the usual 1st treatment plan for relapsed chemo.
Rod is not happy with the idea of giving more chemo without knowing what is causing the neck pain! Argh - what to do, what to do??
We will take Rafael back on Monday to review his pain and have an appointment on Wednesday to start the Zoledronic acid. It's a once a month infusion.
We checked this blood counts before we left and were surprised to hear the Hb is down to 84 :-( Platelets - 76 and Neuts - 3.4!!!!
14th August 2013
I don't use Twitter, but we had so many people contact us today to say that Rafael was "all over" Twitter!! Matt tweeted his "next tattoo", Angela tweeted about the news show tonight and MotoGP tweeted their promo photo! Also, Matt was doing the rounds of Melbourne radio this morning, and my friends saw a photo of him, still showing off his tattoo!!!
Dr Sullivan finally called tonight!!!! However, it was exactly when Rafael's interview was going to be on the news, so we had to call him back ;-)
The interview they showed on the 5pm news was a shorter, edited version. The full one actually aired on the late news
We spoke to Dr Sullivan for about 1/2 hr and I made it VERY clear to him that something needs to be done about Rafael''s pain. He's not going to school, not eating and has no quality of life!
He finally "listened", checked his diary and asked us to bring him in tomorrow at 1pm.
He also discussed the metronomic chemotherapy he wants to start Rafael on - Irinotecan and Temozolomide. I'm not "sold" on this regime, but I'll listen to what he has to say tomorrow ;-)
13th August 2013
A very big and tiring day for Rafael. I let him sleep in as late as possible ;-)
Jude from YAMS had asked last week if Rafael could come to Peter Mac today to do an interview for the MotoGP and YAMS. At the time when I asked him, he said yes, he could do it.
However, given his pain and inability to walk much or turn his head, I thought it might be too hard today.
I couldn't get a car park close to the hospital, so we just walked extra slowly and took it easy.
When we walked into the foyer, the media group were already there and shortly after, Prof Hicks came along. He picked up Rafael and gave him a big cuddle and had a chat about his pain.
An actor from Australian TV - Matt Le Nevez was also there as he's agreed to be YAMS patron. Until yesterday, I didn't know who he was as I don't watch Offspring However, I knew that many of my friends would be very jealous of Rafa and I ;-)
Everyone could see how much pain Rafael was in and how difficult it was for him to move :-(
While Rafael was being interviewed by Angela Bishop from Channel 10, Rod and I had a really good chat outside - it was like a "free consolation" ;-)
Rafael and Matt had a great time meeting each other, even though Rafa had no idea "who" he was ;-) He even gave Matt a tattoo!!
Georgia from the MotoGP wanted to buy Rafael a gift for doing the interview and when she asked me which soccer team is Rafael's favourite, I told her - Melbourne Victory, Real Madrid, Brasil and the Socceroos ;-)
Poor Georgia, she went to a sport store and said "I'll have 1 of each!" They gave Rafa a soccer ball, a beanie and 2 caps!!
As soon as the interview and photo shoot were over, we left and once again, slowly walked back to the car. Rafael was so knocked about that he slept in the car :-(
12th August 2013
Rafael's pain is unrelenting! He can't even go the 2 hours between doses without asking for more. We have some oxycodone here, but I'm not sure if we should give it to him :-(
In the evening, I ended up calling the nurse, who told us to stop giving him the Nurofen as it can affect platelets!!! That's the first we've heard of it and he's been taking for nearly 2 weeks!! She did say it's OK to give the oxycodone as well as Panadol.
9th August 2013
Still no phone call from Dr Sullivan - as I guessed! :-((
Tonight Rafael started complaining of pain again :-( We stared up the Panadol/Nurofen schedule, hoping to get on top of it.
7th August 2013
So, we had an appointment with Dr Sullivan today to discuss his treatments plans for Rafael and discuss what the tumour board had said last week.
Well ….. he was running very late as usual and didn't call us in until 3:50pm. Then he says " I have to go in 10 minutes as we are discussing Rafael at the tumour board today" !!! What the? Wasn't that supposed to be last week??
We very briefly got to tell him about Rafael's pain last week, but he just waved it away! He couldn't check the blood counts as he couldn't log into the computer and it was a huge big waste of time!
He said not to make a follow up appointment until he had a plan and that he would call us tomorrow to talk about the meeting.
4th August 2013
Rafael was SO well today that he was able to play his first soccer match since he started back on chemo :-)
He was so happy to see his friends and he was very keen to play.
After the first 10 minutes, he seemed quite tired, so he came off for the rest of the half.
After half time, he stayed on for the whole 20 minutes and in the process - scored a G O A L!!! The equaliser :-)) He was SO happy and proud of himself, he ran around with his arms out, high giving his team mates ;-)
I made a small YouTube video of the photos we took ,