Oh, oh - Rafael's in trouble!!

Thanks Darin - you ROCK!!!

Blog: August 2010

29th August 2010

We had an awesome day at Lake Mountain today :-)))

There was so much snow. The children didn't really want to toboggan, they just wanted to play in the soft snow, throw snow balls and build snow men :-))

It wasn't even that cold ;-)

Received an email from Peter late in the day saying that Rafael's blood tests showed he has NO immunities to measles, rubella, hep A - blah, blah, and that we should get them done before he goes to Brasil!!! He only has 2 weeks left and I'm working both of them - arghh!! Will have to see what I can get done on Thurs and Fri this week

Please spare a moment's thought for 3 families who all lost their warriors this weekend - it's just not fair!!! :-((

xxx

28th August 2010

I forgot to mention that Rafael also had his dental appointment at RCH last Friday. Sylvia (our friend and dentist) came with me. All routine checks were normal - he has 20 teeth :-)

They tried to do 1 x-ray to see if he had any cavities between teeth, but it didn't work because poor Rafa kept gagging :-( He said to me "they were trying to choke me"!!!

They then did a full jaw x-ray and we had to wait until after lunch to see the results. So off to McDonald's we trooped ;-) LOL

The x-ray showed that his adult teeth that are formed all look ok, no chemo damage!!!! Yeah :-)) He has 2 really big front teeth just waiting to come down ;-) She did say that he will need lot's of orthodontic work in the future - well HELLO, I could have told her that!! ;-)))

23rd August 2010

Our pie night was VERY successful - over $900 raised, final tally still coming in. Thanks to all of our wonderful friends for making it such a success.

Also, special thanks to Joanne for making more of Rafael's stickers, the donations are over $500 now!!!

I'm in a hurry because I have to go to work - Singapore for 2 nights.

Just want to let you know that Rafael had a blast , especially when the Werribee Highway Pursuit police car arrived!! Wonder what the neighbours thought of flashing police lights and siren at 8:30 pm?????

They came back yesterday to give Rafael and his friends a ride!! and guess what?? They had one of Rafa's stickers on their car!!! AWESOME xxx

19th August 2010

Rafael had a slight fever last night, but he was fine this morning, so we sent him off to school. At lunch time, they called me to say he was complaining of feeling hot. I asked what his temp was? They said, oh, his head just feels hot!! I explained - once again - that the protocol at the hospital is that at 38C - we take again in 30 minutes, if it's 38.5C > we have to call the hospital and probably go in :(  

If they could check it for me before I left home, then I'd know what I was dealing with!!

OK, they said they'd check it and call me back. Next phone call - oh, we don't have a thermometer!!!!!!!!!!! I nearly exploded. He has a medical plan that states all of this, he's been there 8 months already - when were they going to tell me they didn't have a lousy thermometer!!!!!

I arrived 1/2 hour later and it was lunch time, so I let Rafael eat with his friends. His temp in one ear was 38.7 and the other 39.2 :-((((

Um, err ..... what to do, what to do? i really didn't want to call the hospital :( So I decided to take him to the new GP he met a few weeks ago, sort of like a shared care thing. Dr Reid is very nice and funny :-) As soon as he looked in Rafael's ear he saw the problem - middle ear infection.

So we came home with some antibiotics and managed to get Rafael to take it AND panadol!!! For some reason he has it in his head now that he's not going to take panadol anymore ;-)

He was very tired and wanted to go to sleep - but didn't :-(

Tomorrow he will have his dentist appointment at RCH, our friend Sylvia who is also our dentist is coming along to hear what they say.

In the evening we are holding our 2nd annual Biggest Aussie Pie Night to raise money for Challenge :-)))

Have spent the last 2 days emailing doctors back and forth - gosh, it takes up so much time ;-) We have received a reply from C.H.O.P. (Philadelphia, USA) about having the ALK gene mutation testing done on Rafael's tumour. Now we just have to work out the logistics of it all!!! The cost is pretty hefty, we'll try to find out of the government might help out??? Who knows ;-)

xxx

12th August 2010

Rafael and Gabriela had a ball at Challenge Junior Camp last weekend. They did all the usual stuff - play, play, play and had fun, fun, fun! For some reason, Rafa didn't go for a ride in either the police car or the fire engine - couldn't get a proper explanation out of him ;-)

I made it to their school just in time for the book parade. It was pouring rain, so had to be held inside the small studio - very crowded with so many parents there. Rafael saw me and gave me a HUGE hug :-) He was dressed as Harry Potter. Gabriela was more "restrained" ;-)

We are holding a Pie night next Friday to raise money for Challenge, an organisation that has helped our family so much the last 2 years. During the week, one of our friends Joanne, emailed a pie shop here in Melbourne. Don't know what she said, but they are donating ALL of the pies :-))))

This is the same Joanne who has been making the bumper stickers for us - now we have so many people asking for one too ;-) There was a line up of cars at school with Cure Neuroblastoma for Rafael stickers - looks awesome :-)))

I took Rafael for his blood test after school on Tuesday. He wasn't very happy as I "sprung" it on him :-( He even started crying and saying "I'm not brave Mummy" :-((( Once we got there, he was an old pro - jumped up in the seat, rolled his sleeve up and even tried to put the pressure strap on himself ;-)

We saw Dr Peter today. Rafael is now 16kg and 105.4 cm tall!!!! Biggest he's ever been :-) In fact, since August last year he has grown 4.4cm and the average for his age is 4 - 5 per year!! Peter did comment that he's not going to be very tall anyway ;-)

Peter was happy with everything except a few odd numbers in his last 2 blood tests. This week HB was 109, MVC(?) was high, platelets 150 and lymphocytes down to 1.4. We knew that the radiation could affect platelets and lymphocytes, so not too worried about that.

The raised MVC and lower HB makes Peter think that Rafael's bone marrow is under some stress. Therefore he has added B12 and folate to the next tests (2 weeks) He said Rafael may need to start taking folate.

Good news is that after more than 2 years - Rafael can stop taking Bactrim - woohoo!! This is an antibiotic he's had to take twice a day, 3 days per week since diagnosis. It's used to prevent pneumonia. We are so happy to stop it :-) It also make him more susceptible to the sun and we've had to be extra cautious.

We asked again about Rafael's immunisations! Peter called another doctor at the hospital. Due to Rafael going to Brasil in 4 weeks time (for 5 weeks), he has suggested Hep A and boosters for pneumococcus and meningococcus. So now I need to find time to fit that in ;-)

We have an appointment at the RCH dentist next Friday, I may be able to get them done then ;-)

I received a lovely email from the Dr in Sydney in who is President of the Advances in Neuroblatoma Research (International) She has discussed and forwarded our email to one of her colleagues - just waiting to hear from him.

Some of the children whose blogs I read and whose families I keep in touch with are doing really bad. Very sudden and aggressive relapses, with doctors saying there are no more options. It just breaks my heart :-(( This disease is brutal and I hate it!!!!!

5th August 2010

Hello, sorry for not updating this week :-( I am going back to work tomorrow and it has literally taken me all week to unpack my bags from the last trip and re-pack them - hahahaha ;-)

All is good here :-) Rafael was running in the house on Sunday and he slipped and fell against a cupboard, scraping one whole side of his face - ouch!!

Other than that, my week has been spent in NB land, drafting and writing emails to NB specialist's, keeping up to date on other children's blogs and offering support when I can.

I arrive home next Tuesday. Gabriela & Rafael's have their school book parade that day - Gabriela will be Dr Seuss and Rafael - Dom will decide on Tuesday morning ;-)

I will take Rafael for his 2 week blood test that afternoon and then we see Dr Peter on Thursday morning.

I have been sending him a few emails, but haven't heard anything back yet, either he's away/busy or ignoring me?? LOL, I'm sure it's the former ;-)

xxx