Blog: July 2010

31st July 2010

We arrived at Peter Mac a little early, but Mark took us straight through and the scan had started by 9:50 am :-) The first is a quick 15 minute whole body scan and Rafael has to lie perfectly still the whole time. At one stage he got an itchy nose and Mummy just wasn't scratching in the right place ;-)

The next 2 scans were actually done together and took 45 minutes. Once again, Rafael didn't move - at all!! If it was me, I'd probably have fallen asleep :-)

We were finished by 11am and we weren't seeing Rod until 12, so Rafael called Daddy at work and invited him to meet us at McDonald's for lunch :-) How could he refuse?? We walked up to Collin's St and ate lunch. We caught the tram back - 1 whole stop!!

We didn't have to wait too long to see Rod. At first he seemed very serious as he was looking at the images. Then he turned around and said "it's all good!" :-)))))

This imaging shows the results of the last 2 treatments, not the one he had this week. Those scans will be done in 3 months time.

Therefore, after 2 doses, the spots in Rafael's arms and legs are gone! The spot in his skull is very feint and if Rod didn't already know it was there, he said he wouldn't be able to see it - WOHOO!!

The indium is still being taken up by the residual tumour that is tucked under Rafael's bowel and also by the spot in his skull. Otherwise, the rest of the scan was clean :-)))

We need to check Rafael's blood counts in 2 weeks and 4 weeks and we see Dr Peter in 2 weeks.

After that, we got to spend about 1 hour talking to Rod and asking him questions and his opinion of different treatment options. He has so much information inside his head - he's amazing and we are so happy to have him on TEAM RAFAEL!!

Today their soccer team played an away game at Keilor Park. Gabriela scored a goal!!!!! Yeah :-) and rafael didn't :-(( But they both had lot's of fun!

We caught up with my cousins in the afternoon. One has just flown out from England with her son and the other (her sister) is here from Adelaide to watch the footy. We spent a nice afternoon at Williamstown, with the children running around at the park :-)

My cousin did an amazing thing - at home in England - she completed a 10km run to raise money for charity - WOW!! and she divided the donations between 2 charities - 1 of those being Rafael :-)) How sweet of her !!!! Thanks Louie - love you xxx

28th July 2010

Nothing ever goes to plan ;-) Yesterday there was traffic chaos in Melbourne due to no trains running, so after we dropped Gabriela at school, we went to Williamstown to have a leisurely breakfast first :) Actually, it was Rafael’s 2^nd breakfast and he ate 2 eggs on toast !!! We arrived at Peter Mac at 10 am and at 11 am, Mark came to tell us “oh, I tried to call you to tell you to come later but you were already here!”  Doh!! 

He asked us to come back at 2pm for a room at 3:30pm. So – what to do?? We thought of going to the aquarium, the park, home?? And decided on Costco instead :) ;) It was good to have Dom with me as I really wanted to find out his clothes size in US sizes!!! Rafael was happy as he got to buy a book and eat 1 WHOLE slice of Costco cheese pizza. For those of you who know, those slices are huge!!!

Mark called us just before 1pm asking us to be back by 1:20pm!!! Yeah – HELLO – we are at Costco eating pizza – busy!!!

We put the Angel cream on Rafael and got to Peter Mac on time.

Rafael was very brave, once again, while the doctor inserted the cannula, he squeezed my hand VERY hard :) :) xxx

We were whisked straight up to the 9^th floor then, room was ready and infusion was given at 2:30pm. It was 5720 mbq’s (whatever’s) Rafael felt quite sick afterwards but didn’t get sick. They gave him some medicine and he was fine.

We were a bit perplexed by his blood results from last week – Haemoglobin was only 106 ( normal range is (115 – 160 ) we are not sure why the drop as his levels of late have all been in the normal range?? Anyway, it didn’t stop the treatment and no one seemed too concerned!!

Just after the infusion they measured Rafael’s radiation and the level was 80!!! Last time it was about 46, so Dom & I were very surprised!!

Rafael fell asleep watching Transformers :)  At 9:30 pm there was a knock at the door, Dom was already in bed too, it was Prof Hicks checking in – oh, to have the life of a doctor – NOT!! We love him, he’s such a nice man x

Rafael wasn’t very happy to be woken at 7am this morning by the nurse doing ob’s!!!  But he cheered up and remained in good spirits all day :)

As expected, Mark arrived early to check Rafael’s radiation level and it was already down to 8!!! So that was it, boom, boom, you’re out of here, pack now!! I drove in as quickly as possible and we were home just after lunch, with a quick stop at McDonald’s drive thru on Rafa’s orders!!!

We go back on Friday at 10am for the SPECT/CT and will meet Rod then. I did manage to pass on copies of the info I got in Chicago and when Rod saw Dom last night, he had it tucked under his arm, ready to read!!

There are 2 other families besides us in Melbourne and 1 in Sydney who are all at the “same” stage and we are all on the same “page” We are desperate to get some things going here in Australia!! Too many children are not winning this battle. It is so unfair and we all HATE it!!! We are building ourselves up to be the VOICE!!

Another RCH NB warrior lost his battle last weekend, we are so sad. That brings our team to 5 in 10 weeks – I mean – WHATTTTTTTTTTTT!!! I am going insane with worry for Rafael, worry for our fellow NB warriors. What more can we do, should we do, can we do????

My only “saving Grace” is that “statistically” there is a 20 – 30% survival rate – so therefore, we must be in that bunch. Some kids HAVE to survive, otherwise it’d be a 100% disease :( :( WE must surely, truly, beggingly be in the “lucky” group”!!!!

xxx

27th July 2010

Off to Peter Mac this morning…. hopefully we can get into a room at a reasonable time!! Anna told me that last week Lucas didn’t get a room until 4pm – that’s just insane!!! They know we are coming, they know there is only 1 room in the hospital that we can use – so get the “oldies” out at a reasonable hour – like when they wake in the morning!!! It’s always a juggle, as they have to clean the room blah, blah!!

We did not hear anything about Rafael’s blood test last week, so I presume it’s all good??

Last weekend FAN (Families Against Neuroblastoma) had a big awareness campaign on Facebook, it was inspiring to see so many people posting about NB and updating their profile pictures to help raise awareness. One of the families made a new profile picture for us :)

22nd July 2010

I am SO sorry for the VERY slow updates!!! We have been home for a week now and have been adjusting t the time zone as well as hopping straight back into school ;-)

Back to last week – our flight to LA was good, except Gabriela didn’t get a seat next to Rafael & I – she was across the aisle between 2 people L But it was ok, she just watched her movies :) and me?? I got kicked the whole way by a precocious 3 year old :(

I dragged the children out of bed very early the next day to kick start our day at Disneyland. We got in early and headed straight for Tomorrowland to do the Buzz Lightyear and Star Tours rides – again (3^rd time!) We finally went for a ride on the Monorail too. We left the park around 11am and it was just as well because hundreds of people were filing in to watch the All Stars baseball teams do a parade!

It was very hot also, so we headed straight for the pool :)

Around 4 pm we went back, to California Park this time. As soon as we got in, we saw Chip ‘ n ‘ Dale – Gabriela & Rafael were VERY excited!! They had been wanting to meet them more than anyone J and straight after, Pluto came along :) We were just in time to watch the Pixar parade which was FANTASTIC – they both loved it, even when they were being squirted by water :)

We decided to go on the big Ferris Wheel and the children chose to go in the carriage that swings – bad move!! We were terrified – had no idea it would be so scary. Rafael had nowhere to hang on to, so I wedged my feet against the opposite seat and held onto him with 1 arm. Poor Lela had to grip the seat as hard as she could!! At least I was able to blame that one on them!!!

Rafael really wanted to go on the swinging chair ride. Gabriela said she didn’t. I let Gabriela stand by the exit while Rafa & I waited in line. As we were almost on the ride, I looked over and saw that she was crying. I left Rafa in one and ran to see if she was ok. Poor darling, she’d got her knee caught between 2 bars and 2 men had to pull it out. She was sobbing and in pain :( Went back to get Rafael (he was ok once he realized Lela was really hurt), then went looking for some ice. A nice girl saw Lela limping and crying and called a nurse to come to us. Ice pack on, a few stickers and a ride in a wheel chair perked her up. She was more scared than anything, said she didn’t know where I was and if I was ever going to come back :( :( :(

They really wanted to do the Toy Story ride 1 more time, so once Lela was able to walk again, we slowly went back to it :) I even got to ride on my own so I could have some fun too ;-)

After a very long day, we headed back to the hotel :) That was our 4^th day at Disney and we decided that was enough for this trip, so the next day spent all morning in the pool :-)

We left that night and had to make a mad run through LAX to get to our gate before the plane left – gotta love LAX security :( :(

The children were so excited to get home and see Daddy and tell him all about their trip, as well as seeing Bubbles – their cat :)

They fell asleep early and woke up bright and cheery the next morning, ready to go and play soccer :) Our friend took some video; I’ll post the link when I can :)

Rafael had a hearing test on Tuesday and it is stable :) Don’t have to go back until November! He also had a blood test as well, should have done it last week, oh well ;-)

They both loved going back to school and telling their friends all about their trip :)

We had parent teacher interviews on Wednesday night. Both are doing well, they are both good at Maths and could do a little better in English – sounds like someone I know!!!

We are off to Peter Mac again on Tuesday. Will update soon xxx

12th July 2010

Arrghh!!! Just typed a huge post and lost it :-(((

OK, briefly - we all had a fantastic time at the conference

The children loved the kid’s room and their new friends

Everyone kept saying, "Your kids are SO cute"

G & R very tired, Gabriela didn't even want to dance at the Family dinner :-( Went for dinner with a big group on Saturday night - had a blast!!

2 doctors presented very interesting trials. On Saturday. I spoke to Dr Greg Yanik about the treatment Rafael is having - he was VERY impressed - said its "cutting edge" treatment and he wants to be kept in the loop ;-) The other was Dr Soni from Ohio who is using Allogenic (donor) stem cells as immunotherapy - amazing stuff and I'll be pursuing it with Dr Peter as a possible next step for Rafael. The logic behind it seems quite "simple"; it's just the fine-tuning that needs to be sorted out.

Rafael upset that we didn't get to downtown Chicago. The nearest train station was 15 mins away and then it would take 1 1/2 hours each way. Between check in times and check out times and moving hotels, we couldn't really make it. Instead we went to Legoland ;-) We even watched a 4D movie - WOW

It was so good to catch up with Donna again - she knows more than most of the doctors ;-) Also we made new friends and caught up with others we met last year :-)) Very happy.

We fly to Long Beach airport tonight and then get a bus back to Anaheim. The flights to John Wayne airport were just too expensive :-( That gives us all day tomorrow to see anything we missed, or go on rides that we really liked. It would be good to see one of the shows ;-)

7th July 2010

Today marks 2 years non stop of fighting this disease :-(

It seems like ages ago now that the doctors sat us down and told us so gravely the diagnosis and the "plan" - 9 months of A, B & C to get to remission. Well that plan went out the window - 9 months indeed!!!

We are very thankful for the wonderful team of doctors we have, working to get rid of this cancer!!

Prof Rod is working tirelessly to find new methods of treating these types of cancers using nuclear medicine.

Dr Peter - what can I say?? He is open to every question and idea we have, he is more than happy to listen to Prof Rod’s plans and he allows us to work around "things"

Some doctors seems quite set in their ways or set in the protocol of that disease :-(

What works for 1 doesn't always work for the other :-(

I'm sure he is dreading me coming back from Chicago and asking another million questions like last year!! But you know what? He somehow found the time, over and over, to sit down and reply to my emails, each and every time :-) !!!!!!!

Rafael is stable, he is happy and carefree - that's all that matters :-)))

Dom and I are worn out :-( We (as many other cancer families do) refer to it as the roller coaster ride that never stops!!! This is the new "normal" for us :-(

I need a holiday!!! ... and don't be cheeky and say I AM having a holiday - this is not relaxing for me at all!! Children on the go all day, up until 3am and sleeping all day!! It's insane ;-)

Next holiday will involve a warm locale, a pool and a bar!!!!

xxx

6th July 2010

We are in Chicago now :-))

We spent 2 days at Disneyland and 1 at Disneyland California. It would take another whole blog to write everything!!

We've walked and walked and walked. The children were a bit overwhelmed at 1st (I think??)

Another NB Dad in Oz suggested I contact Guest Relations before I left. They arranged a Guest Access Card for us - OMG!!! It's pure Gold. We are so lucky (yes, cancer is really lucky - not!) Basically it means that we don't have to queue for any rides :-))))) That has saved us a lot of time. It was 4th of July weekend and the parks were very busy.

The children loved the Star Tours ride and we ended up doing it twice. Rafa was too cute - he really believed that we left Earth and went to Endor!!!

Matterhorn bobsled - a little scary..... Space Mountain - a bit scarier ....... Splash Mountain - came off it with 2 crying children - oops :-(((

They loved California Park as they got to meet many characters, get their autograph and have their photo's taken :-))

The parks were too crowded to see any of the big nighttime shows. If we were with someone else, they could wait and hold a spot, but we weren't too fussed. Better time to go on the rides as everyone else is watching ;-)

On Sunday we left the park when it closed at midnight and made the last bus back to the hotel ;-)

Rafael is more interested in going to the pool than anything else ;-) I think we'll have a rest day tomorrow and not go into the city as planned, just hang out by the pool and maybe go to the mall.

Rafael has been complaining of a sore ear :-( I think it might be from so much swimming and getting in the spa, out of the spa, in the pool, out of the pool!! I'll try to find a chemist today and get some drops. He cant's even put his hearing aid in :-(

xxx

2nd July 2010

We flew out of Melbourne on Fri 2nd July on the new Qantas A380. I knew a few of the crew and we managed to get seats altogether - 2 + 1 :-))

The flight was long 13 hours and none of slept much. My eyes were so sore and scratchy when I arrived ;-)

We landed in LA on - Fri 2nd July :-))))) So we felt like we were starting our holiday all over again ;-)

Gabriela fell asleep in the bus ride to Anaheim, Rafael didn't stop looking at everything - the trees, the smog, the freeways and asking 1 million questions :-) He is VERY excited about this trip - God Bless him xxx

Today we are all out of sync :-( I managed to have a quick 1-hour nap while the children watched TV.

Then we went to the pool!!!! They loved the spa, but it was SO hot - 104F!! But then, if you moved into the pool - it seemed freezing - argh!! Took a while for Rafael to find his water wings again. He didn’t like the cold ;-) After that, he was having a ball, and Lela too.

I dragged them away with the promising of going back after lunch. We ate a quick lunch in the hotel - 1 child eats free and the other cost me a whole US$2 ;-))) Like that!

We came back to the room to try to nap and I am NOT joking when I say that within 1 minute both were snoring softly :-)) I had some trouble trying to wake them up 4 hours later. Daddy called on Skype and that did the trick :-))))

Our hotel is right across the road from Disneyland and has a great pool bar area. We will go down there tonight to have dinner and watch the fireworks display. The next 2 nights will be extra special fireworks to celebrate 4th July - bonus

xxx