30th March 2012
We had to be at the hospital for a blood test at 8:30 am and then see an oncology fellow at 9:30. In between, we went to look at the aquarium (again!!) Rafael just loves it, especially the sharks :-)
On our way upstairs, we ran into Dr Peter in the lift. He didn't know that Rafael's counts had dropped and he was very surprised!
While we were waiting to see the Fellow, Peter started work and said we could slot in and see him instead ;-)))
Rafael's red count had dropped even further - 71, but his other ones have come up a little bit. Peter asked if had already done a cross type and match of Rafael's blood? No, we didn't as we only had a normal blood test slip. Rafael is also neutropenic, therefore still at risk of getting an infection :-(
Rafael was in fine form, jumping on and off the bed :-) Peter thinks that Rafael's counts should come up on their own and even though 77 is definitely a transfusion level, he said that we could go home and repeat the test on Tuesday!!! Yeah - we weren't looking forward to staying there all day ;-)
So Rafael had the last day of school off and now they are on holidays for 2 weeks. Hopefully he's on the mend and get some good R & R over the break :-)) Let's see what happens next week ....
29th March 2012
The only reason we let Rafa go to school today was that he had an excursion to "Traffic School" that he'd been looking forward to ALL term!! They get to ride bikes around and obey stop signs etc. He had a great day :-))
After he left, Dr Tim from Peter Mac emailed with Rafael's blood results - we were shocked by how much they had dropped. His Hb (red cells) were down to 81, white cells 0.7 and Plt. 68. With such a low white cell count, he is at risk of getting an infection and needing to be admitted :-((
I spoke to Dr Peter's nurse, and she said that we need to bring him in tomorrow for a blood transfusion :-((
Rafael is still his happy self, none of this is getting him down :-)
28th March 2012
Rafael is very tired and flat, as well as very pale! He didn't go to soccer training last night. I have asked his doctors if we should do a blood test this week instead of next to check?? He stayed home with me today and mostly rested, watching tv. I took him to the local pathology clinic in the afternoon for a blood test and waited all day to receive the results :-(
We both went to collect Gabriela from Camp, she had a blast, and didn't come home as tired and grumpy as we expected ;-) xxx
27th March 2012
Rafael wanted to go to school today as it was casual clothes day :-)))
26th March 2012
Rafael was very tired and flat this morning, I wanted him to stay home from school, but he wanted to go so that he could talk about his weekend :-)
Gabriela went off to Grade 4 camp for 3 days.
25th March 2012
Happy 8th Birthday Rafael!!!!!!!
You were so happy and surprised this morning to receive your birthday present - Terrafin!! Yeah -))))
We drove down to Avalon airport for the Peter Mac Super Car Sunday. This year we had a special spot, right at the back of the airport. It was a much better set up than last year. 3 Ferrari's and 1 porsche. However, they were only allowed to do 1 car per lap this year, so that slowed it down a lot. I think in the 2 hours we were there, the children only got 1 ride per car ;-)
They even brought out a cake at the end and everyone sang "Happy Birthday" to Rafa :-)
24th March 2012
We had a bbq at home with a small group of friends, a sort of birthday celebration for Rafa, but mostly just an excuse to have a bbq ;-)) Rafael had a blast playing with his friends!
17th March 2012
Rafael had a combined birthday party today with his friend Joe from school - arghhh!!! 21 screaming children, a few well behaved and a few not so ..... ;-)))
Next Sunday is his birthday and the Peter Mac Ferrari Day has been re scheduled for that day!! Wow - what a birthday present ;-)
16th March 2012
Rafael had his appointment with Dr Peter today and his 2 week blood test (a little early)
Counts were ok, not as low as I was expecting ;-)
Rafael really crashed on Wednesday night, he was pale, tired and very clammy, but didn't get a fever. I kept him home from school on Thurs and he slept until 10:30am :-))
Today haemoglobin was 102 and platelets at 130 - so no transfusions needed :-)))
Dr Peter was very happy with the scan report from Peter Mac :-)) He also agreed that Rafael only needs 1 cycle of oral Etoposide :-)))
New plan is to repeat bloods in 2 weeks, see Dr Peter in 4 weeks and scan in June. "Wait and see" - that is our lives these days!!
Dr Peter agrees with us also, that Rafael's GFR result is probably not an accurate result!! Today his urea and creatinine are both normal :-))
I imagine that they'll re test this in a few months.
I spoke to Dr Tim at Peter Mac in the afternoon. Rafael's WCC (white cell count) is low and he is at risk on infection, but all else is as expected ;-)
ps: For my records - Height = 112.7cm and weight = 17.7 kg
8th March 2012
Dom worked from home today, so he helped me give the chemo. It took about 1 minute for it to be done!! The magic of Dad's ;-)
Today Rafael went back to school - he was SO happy to see all of his friends :-) He is doing really well, off playing soccer and being a very normal almost 8 year old :-))
So far, he's had no nausea, or any other side effects. We have an appointment with Dr Peter next Friday and we'll check Rafael's blood counts on the same day.
7th March 2012
Back at Peter Mac for post infusion scan. We were expecting to see stable disease and dreading seeing advancing disease.
Instead, we received the very good news that ALL of the spots are less intense that the scan in January!!! It's working ;-)))
As you can imagine, we are elated, indebted to Prof Hicks and his team and now feel like we can breathe for the first time in months!!!
Dr Tim suggested that Rafael might only need to do 1 cycle of chemo instead of 2! They called Dr Peter while we waited, and he was abit reserved, wanted to make a judgement after he's seen the images and seen Rafael next week ;-)
I received an email from Prof Hicks later that day (he's in Copenhagen) saying how gratified he was by those results :-) He even sent a special email to Rafael with a photo of The Little Mermaid in Copenhagen ;-)
6th March 2012
Today, Val in Nuclear Medicine said we could stay at home in the morning and not head in to Peter Mac until she knew what time a room would be available :-) So happy to not have to sit around there and wait!!
I was alone to give Rafael his chemo today. I let him sleep in until 9am, then woke him up with the anti nausea wafer. Well, 1/2 an hour later, I had a 15 minute fight with him to swallow the chemo :-(( Oh dear!! He locked his jaw, said it tastes disgusting and he couldn't do it. I threatened to have a nasal tube put in, and he said "fine, I'll have that!!" After me yelling and arguing and him crying a lot, he managed to do it - phew!
She called about 10:30, but by the time we got there, I couldn't find a car park anywhere near the hospital - hehe
We went to admissions first and checked in, they called the ward, who said the room wouldn't be ready until noon, so to go for a walk.
Rafael and I went to sit outside the hospital so I could get a phone signal, and Val came looking for us - we could go to Nuc. Med anyway and get the consent forms signed while we waited ;-)
We met Dr Tim there and the 1st ? I asked was Rafael's GFR result ;-) We were shocked to hear that it's gone down to 54!!! Therefore, they have to lower the dose of today's Lutetium to 3GBq's, not 4 as planned.
Dom suggested, and is probably right, that because Rafael was forced to fast for so long on Wednesday, it's maybe not a true measure of his kidney function?? We will probably have to repeat it in a few months time.
We got up to Ward 9 and the room still wasn't ready, then they couldn't find a nurse to administer the pre meds - arghh!! So, the actual amino acid infusion didn't start until 2pm, and it has to run for 4 hours. They gave Rafael an anit nusea tablet beforehand, and he swalled it :-) It wasn't a dissolvable one :-(
Dr Tim came back to administer the Lutetium dose, Rafael just watched tv throughout ;-0 As it was going through his PICC line, he didn't have any vein irritation like last time ;-)
Towards the end, we realised that Rafael seemed quite "spaced out"!! We didn't know but they had also given a dose of Lorazepam, which he didn't have last time :-( Not sure why, really :(
Anyway, the effects lasted until he went to bed - our little drunk man who couldn't walk in a straight line ;-)
5th March 2012
1st day of oral Etoposide :-( I asked Dom to leave for work a bit later so he could help me!
I woke Rafael up at 6:30 to give him an anti nausea wafer that dissolves on his tongue (he will have this every day 1/2 hour before chemo)
At 7:00 am, we sat with him and tried to get him to swallow on his own, but in the end, Dom squirted it down his throat and Rafael quickly followed it with a thimble of apple juice. He had 1 gag reflex, but kept it all down!! He said it tasted disgusting :-((( Technically, he's not meant to have the AJ, meant to be an empty stomach, but jeez - we have to help him somehow!!!
I sat with him for the next 1/2 hour, but he was fine, just tired.
We did manage to get stuck into the homework in the morning and got a lot done :-)
Rafael has a tutor at school once per week, who is funded by Ronald McDonald House Charities and she goes to his school. Well - today she came to our house :-) How sweet is that? She worked with Rafael for another hour and they got through a lot of stuff.
4th March 2012
Rafael came up to me today, gave me a big kiss and cuddle and said " I don't want to have cancer anymore" :-((( Broke my heart!! I sat with him and said that's all we want and how important it would be for him to swallow his medicine from tomorrow, to get rid of that cancer!
2nd March 2012
I didn't send Rafael to school today and he had a really good sleep in :-) I tried to get him to do some of his homework, but not much was done ;-) He's very tired, last few days have knocked him about, as well as his blood counts having dropped considerably ;-(
Back at RCH today for Rafael's GFR (kidney function)
I tried to get him to drink lots of water last night, but didn't have much success!
When we got to Nuclear medicine, Duncan said that he couldn't use the PICC line for the injection and he'd have to put a canulla in :-( I was so cross at that team yesterday! So poor Rafael had to have it done without any Angel cream :-( He was very brave and didn't complain at all!!! :-)
Then we made our way up to Day Oncology, our 1st visit to the new area. It's bigger than the old one, but separated into sections, so it seems smaller. There were lot's of tv's around, so Rafael just sat and watched.
Thankfully they weer able to do the blood draws through the PICC line and we were out of there by 3:30 :-)
Had to stop at the pharmacy and pick up the chemotherapy syringes. The pharmacist said that Rafael probably will get sick, his hair will fall out and his blood counts will drop. All of which Dr Peter said wouldn't happen! Who to believe?
Rafael's dose is 38mg. It comes in a liquid for, in a syringe, which is 1.9ml. So just a tiny bit, really!!