Another year over, one I wish we didn’t have to go through :-(
So tough for our little Warrior!!
Yet, here we are, and he’s happy, healthy and fit – but still with a lot of cancer :-(
Let’s hope next year we can knock this Beast off the battlefield once and for all!!!
We had a quiet night at home, watching TV. Just before midnight I said we should drive to the Golf Club to watch the fireworks. We got there right on time, right underneath and witnessed a great 10 minute display :-) Very proud of our little “suburb” ;-)
A very special day today – we drove down to Portarlington to catch up with our dear friends The Watson’s :-) :-)
My dear friend Julia was just diagnosed with stage 4 bowel cancer L They have 4 girls under 10 and she has a huge battle ahead :-( It has knocked us all for a six – no words :-(
We had a great day! We took all of the food and wine J The girls played in and out of the water and Jules and I drank and talked, drank and talked! Thanks to the hubby’s for child minding ;-)
We took Rafael into RCH this morning to check his blood counts and as expected, he needed a blood transfusion – was a long day, but at least we managed to get through Christmas without having to go in ;-)
Have I mentioned that Gabriela and Rafael like to sleep in - L A T E?????
We weren’t expecting them to wake up much before 11am but Rafa surprised us by getting up at 9 am :-) Of course, we had to go wake up Lela straight away!
The cyclone of present opening was over in about 20 minutes. Santa left lots of gifts, big and small under the tree :-)
Rafael was disappointed because he only wanted a Nintendo 3DS and Santa didn’t bring it!!! Bad Santa :-(
Dom’s work had their Children’s party today, so Lela and Rafa had to wake up early to go into work with him ;-)
Big night here – 23 adults and children celebrating Christmas Eve – Santa even managed to stop in on his way across the world!!!
Happy 11th Birthday to our darling Princess Gabriela!!!!
We were worried that you’d have to spend another birthday at RCH with Rafael having treatment, but we managed to dodge that and spend the day together. We love you SO much, you are a special girl, daughter and sister xxx
We have a nurse from the hospital that comes to our house the weekend after Rafael finishes chemo to give him an injection in his leg. It’s called “Neulasta”, it’s very tiny, but hurts a lot when going in :-( It helps his White Cell Count (WCC) increase after it drops.
While the nurse was here today, we asked her to do a finger prick blood test as Rafael was already saying that he needed a blood transfusion – almost a week earlier than normal!
Getting so close to Christmas, we wanted it checked ASAP and get any hospital visits out of the way!
I called the nurse in charge in the evening for the results and his Haemoglobin was fine ~ 100 :-)
40C here in Melbourne today! Thankfully it was nice and cool at RCH :-)
Rafael really wants to go for a swim, but he has a line in his port and isn't allowed :-( The only way we could make it happen was if they disconnected today and accessed him again tomorrow :-( Not worth another needle for one day :-(
Dom made his famous coconut cake and we took it in to Day Onc for the nurses to share ;-)
Instead we've spent the afternoon at home with the air con on :-)
Rafael has hardly eaten the last few days and he does have diarrhoea from the Irinotecan, it's knocking him around now :-( He is covered in bruises so we are checking his bloods tomorrow as well as next week xxx
5th day of school holidays today and 5th day at RCH :-( No fun yet ;-)
No problems today. Lela stayed at home with Dom, so Rafael and I had a very quiet day. he just watches You Tube videos the whole time we are there - the conversation is very light ;-)
I did mange to catch Dr Michael to sign a form for Rafael to go on camp with Camp Quality.
Whilst he was there, we had a long discussion about the next stage of Rafael's treatment and have agreed to the next steps.
I wrote him a long email in the afternoon to remind him of all we'd discussed ;-) He actually likes that as he can be a bit forgetful ;-)
So, Rafael will have 1 more cycle of Irinotecan/Temozolomide on 6th January.
Then he will be admitted for 24 hours of hydration to test his urine output and kidney function to give a clearer idea of what his kidneys can cope with. at the same time he'll also have Bone Marrow/Trephine aspirates to use as a benchmark with the new chemo regime.
So far he's been having low doses of chemo. Already his hair is falling out :-(
On 27th Jan (depending on blood counts) he'll start 2 cycles of a higher dose (but not high dose) chemo called TVD (Topotecan/Vincristine/Doxorubicin as per the European high risk protocol.
He will have this inpatient, for 7 days. They want to keep him in so that they can monitor his nausea and renal function.
If he tolerates it OK and his counts recover within 3 - 4 weeks, he'll have a 2nd cycle. After that, his bone marrow will be tested again and he'll have scans. Depending on those results, he'll either have another 2 cycles or move up to High Dose chemo with stem cell return.
It all depends on his bone marrow and whether his kidneys can cope! Clear as mud hey??
Much smoother today, except Rafael said he was feeling sick in the car and he left his window down.
While we were waiting to go into Day Onc, I could see that he wanted to go to the bathroom but it was occupied. I told him to use the one in Day Onc. He is stubborn (have i mentioned that??) and wanted to wait! Then he just looked at me - very pale and green and said 'i'm going to be sick!" I dashed through the doors and just got him to the toilet in time for a huge vomit :-( :-( Poor little guys, all his breakfast gone :-(
Jeez, I'm glad we didn't come in until midday - not!!! We had to wait 1 1/2 hours before the chemo was ready and they called us into Day Onc. By that time, there was only 1 seat left, the place was packed! I was in such a bad mood with them all. They didn't even come to us and say something like "Oh, the chemo is delayed, why don't you go off and eat something"!!! No, they just left us sitting there with no explanation - gggrrrrr!!!!!
Finally it started and I eventually cooled down, but they knew I was p*ssed - big time!!!
We had an interesting morning in the City ;-)
I took Rafael's medicine to breakfast with us as he needs to have it with food. He saw the Nutri Grain on the buffet and asked for 2 serves, mixed with Cornflakes. He did really well and ate it all. Then I had to ruin it by giving him the horrible Ceferoxime (without his grape juice) and he promptly vomited it all back up :-( :-(
After that, we walked to Myer to look at the Christmas windows. Lucky we got there early as by the time we finished, the queue was very long ;-)
Rafael had a Myer voucher that was sent to him earlier this year and he wanted to buy some Pokemon toys. Meanwhile, we were in touch with our friends who were meeting us at Myer.
They headed up to the toy department while we were finishing Rafael's purchase and their son slipped on the escalator and cut his knee very deep :-(
Do you know how hard it is to find a GP in the city???? I looked after their daughter whilst his Mum took him off for some "super glue" stitches :-(
We ended up at Dom's work and met him for a coffee :-)
After that, we headed to RCH for Rafael to have his blood counts checked, get the go ahead for chemo to start on Monday and wait for pharmacy to prepare the Temozolomide (oral chemo)
Arrghhh!! everything takes forever there :-( 2 1/2 hours later we were done and finally on our way home :-)
When I got home, pharmacy called to say not to come before 10:30am on Monday because the chemo would not arrive until that time!
Rafael's last day in Grade 3 and his last day at the Williamstown campus :-( We have loved that school so much and will miss it after 6 years - won't miss the driving though ;-)
I took one of Rafael's winter shirts with us and got all of his classmates to sign it :-)
We received some shocking news this morning, one of our dear friends has Colon cancer :-( She has 4 girls under the age of 10. I was driving the car when Dom told me - just so unexpected and awful :-( My heart breaks for her, but I do truly believe that she'll beat this Beast, just like her birthday twin Rafael!!!
Actually, it's been a bad month of news :-( Rafael's teacher has been in ICU, in a coma with a lung infection and last week another friend was diagnosed with MS :-(
The final day of school always ends with Speech Night at the Town Hall. This year we decided to book a hotel instead of rushing in and then getting home late ;-) Unfortunately - I picked the wrong hotel!!! The pool was closed for maintenance and they didn't tell us when we booked :-( Lela & Rafa were so excited about going for a swim!!!!
We met up with 2 other families in federation Square for dinner and the children all ate lots, as well as us ;-)
Speech Night was good. Lela sang twice with the Choir as well as the whole Junior School performing.
2 students from each class receive awards and this year Rafael was the recipient of the Courage Award :-) You weren't allowed to clap until all of the awards were presented, but I heard 2 distant whistles form the crowd ;-)
Afterwards, we went to a bar and had a nightcap with another family. Nice way to finish the year :-)
Rafael had an appointment with his Endocrinologist this morning. It was at 11:20 and I hoped to have him back at school in time for their special pizza lunch. Well, after waiting 55 minutes to be called in and a quick 5 minute discussion, we were out of there!!! The plan is for Rafael to have a Zolodronic Acid infusion every 4 months for up to 2 years to control bone pain.
Just made it to school as the children were about to start eating :-)
Had a good telephone conversation with Michael tonight to clear up some misunderstandings about Rafael's next 2 rounds of chemo. It looked like we'd be moving to 2 weeks of chemo and then 1 week off, which meant the next cycle would mean we'd be there over Christmas :-(
Anyway, got it sorted and it will be the same as before - 1 week on and 2 off :-) :-)
Gabriela came home form school VERY excited today!!! It was announced that she has been selected House Captain for Steedman next year :-) Congratulations Princess xxx
We were lucky enough to buy some tickets to Bon Jovi for $35 each!!! We went to the cafe for a late lunch so that we didn't have to eat much in the city before the concert.
I'm not sure how much the children enjoyed it?? Rafa like fit when there was a song he knew ;-)
Dom and I really enjoyed the show!!
Nurse Sandy called us at 8:30 am to say that Rafael's Hb was down to 69 and Platelets down to 19 :-( We weren't too surprised! She was arranging for both to be transfused as we headed in.
Dom stayed at home with Lela, so just Rafael and I to keep each other company ;-) It was a very quiet day. We managed to get a room on the ward and Rafael mostly played Minecraft on his computer.
It was a longgggggggg day ;-)
6th December 2013
Rafael had a special day at school today called "2014 Day".
He went up to the Truganina campus and was put into his class for next year :-) He caught the bus in the morning with Lela :-)
He was very happy to hear that 2 of his best friends - Kane 7 Joe will both be with him next year.
He was looking tired and pale this morning, so I picked him up from school and took him to Werribee hospital for a blood test. We sometimes go there as it's close by and they have their own pathology lab and usually the results are sent to RCH within 1 hour.
Well not today :-( For some reason they sent it off to their main lab in Heidelberg and the results weren't sent through to RCH by the time the nurses left :-(