We had a great New Year's Eve at our friends house :-) The children all played together and then they helped Rafael take his 4 little pills :-)) They went down very easily!!
30th December 2012
After our talk with Peter the other day, I emailed Rod to find out if there could be some kind of mistake at all??
Tonight he wrote back, and I cried!! Seriously - he is just the most amazing doctor anyone could wish for xxx
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Dear Dom and Tash
The tough thing about MRI is that following treatment structural abnormalities remain. I suggest that you think of them like scars. These can be at various stages of evolution from a new, healing scar through to an old healed scar (as you will appreciate, one is red and the other white).
That is why they look different on MRI. We hope that most of them aren't active and it is great the Rafael has no symptoms but we know that GaTate scans can detect disease before it is symptomatic.
It has been a source of great joy to me to be involved in Raf's care in 2012, despite the disappointment of his recent relapse and I wish us all a happy 2013 enjoying every life event in his rich life
29th December 2012
Chemo didn't go so well tonight :-(
Dom got the 1st one down. Rafael spit the 2nd one up and I had to really push and struggle with my gloves on the get it down. 3rd one - no problem :-) But the 4th one!!! OMG - he just wouldn't swallow it!! I had to keep trying to push it back down his throughout, it dissolved, there was chemo powder all over his tongue :-(
I guess my last push was too much and he retched - then vomited everything up!!! Oh no! We could not start again, so that is one whole dose missed!!! I wonder if any was absorbed at all???
28th December 2012
We saw Dr Peter today.
He was very happy that I gave him one of the new Neuroblastoma Australia badges that have been made. He immediately put it on his lanyard :-)))
Rafael's blood counts were good, although his platelets have dropped a lot in 2 weeks. His lymphocytes are on the increase :-)
Can you believe that Peter is still not convinced by what the scans are saying??? He just doesn't "see it" on the images. We saw the MRI today and it does look the same as the January one. However the radiologist's report states - multiple metastatic bone lesions!!
We have a date for Rafael's scan at Peter Mac - 16th January. Let's see what that shows.
Anyway, Peter was still happy to proceed with the 2nd round of Temozolomide, but said he may not do the 3rd round, depends on scan at Peter Mac.
He was very happy with Rafael overall. As always, Rafa was a giggly little worm while Peter tried to examine him. Peter even took his blood pressure today, which he never does. It was very normal, but Peter commented that with NB, it's often elevated. Hadn't heard that before ;-)
Gabriela had a friend sleeping over, so the 2 girls held his hand while he cried and complained about having to take the tablets again :-((
He got himself so worked up! Dom managed to get 3 down and I struggled to push another one down with gloves on as it had started to dissolve :-((
27th December 2012
We spent the day at our favourite beach today - Portarlington :-) The water was cold, but that didn't stop all of the children eventually getting in and having a great day :-)
25th December 2012
Santa came quietly in the middle of the night, we went to bed so late, 2am, we were worried he wouldn't come!!
We had to wake up Lela and Rafa at 10 am to come and see the tree and all the goodies he'd left :-)
It took them a modest 45 minutes to unwrap all their gifts :-)))
The rest of the day was spent relaxing, doing nothing, still digesting dinner from last night.
In the evening we went to our friend Jo's house for another dinner!! The children all had a wonderful time running around, screaming and chasing each other!
24th December 2012
A huge day of preparation for a wonderful Christmas Eve celebration :-)
At one stage I was snowed under with so much prep to do, I called one of the guests, Susan and begged her to come and help :-) She brought her Dada a long and he was amazing! Peeled the vegies, stuffed the turkey, carved the ham and scored the pork - whew!!
Dom, Gabriela, Rafael and Bridget's family all went off to Church together while I kept an eye on the food cooking. Our friends started arriving and when they got home, everyone was here :-))
I made a lasagne for the children and they sat at one table and we adults, ate a very traditional Christmas dinner in peace ;-)
We had a wonderful night, ate too much, drank too much ......
23rd December 2012
Happy 10th Birthday Lela!!!
I arrived home from Singapore with about 5 minutes to spare before she woke up :-)))
We woke up Rafael and gave Gabriela her presents and breakfast of choice :-)
We didn't do a cake today as she's having her party in January.
Wow, can't believe we have a 10 year old!!! Has gone so fast :-(
13th December 2012
Junior School Speech night and the last day of school :-)))
11th December 2012
Annual Westbourne Carol service tonight. It was so lovely to hear all of the school choirs singing Christmas carols together :-) I didn't cry this year ;-:
8th December 2012
Rafael had his MRI this morning. Gabriela and I went with them, but had to leave to get Lela to Portuguese class on time. By the time I got back to RCH, Rafael had just finished and was having McDonalds for lunch :-) Dom said it all went well, Rafael watched a movie throughout the scan and laid perfectly still :-) We got them to do Rafa's 2 week blood test while we were there, a little early, but saved him having to have another needle on Tuesday.
That night we had received tickets to watch a dress rehearsal of War Horse. My cousin from Adelaide was in Melbourne and she came along too :-)
I don't think the children enjoyed it - they seemed a bit bored :-( We enjoyed it though!
7th December 2012
2013 day today, Gabriela and Rafael found out who their teachers will be next year and spent the day in their new classrooms. Rafael is very happy he has Mrs Cameron, but more importantly - he is with most of his friends + his BFF - Kane :-))))
2nd December 2012
Rafael took his last day of chemo while I was on my way to Singapore. He was so excited and happy that he'd taken all 4 (with Daddy's) help that he wanted to call me straight away and tell me - too cute!
Dom found the best "system" was to just push the pill to the back of Rafa's throat and then he'd swallow a little water. No stress, no tears :-)
1st December 2012
Oh dear, Rafael just doesn't like the idea of having to swallow these little tablets :-(((
Annual Challenge Christmas party today :-) Gabriela and Rafael even went on the Gravitron this year! Lela was screaming so much, but after a while she calmed down - braver than me ;-)
We saw lots of our cancer friends there, a nice day.
