Sunday, 28 February 2010

Friday, 12 February 2010

Blog: Neuroblastoma is a rare cancer....

In 2005, Donna Ludwinski went searching out some numbers. Here is what she could find:-

"High-risk neuroblastoma is one of the most difficult cancers to treat, and the cure rate is still dismal. All numbers are for the US:

650 new cases of NB every year

300,000,000 total population

1 NB per 460,000 person (all ages) per year

152,700 pediatricians in the US (Bureau of labor statistics - 2002)

1 NB case per 230 pediatricians per year.

This means in a 40-year career, only 1 out of every 6 pediatricians have EVER SEEN ONE CASE OF NB!

Now look at pediatric oncologists:

801 pediatric oncologists (estimated members of The American Society of Pediatric Hematology/Oncology-- actually there are many more that are not members)

650 cases NB per year, seen by 801 pediatric oncologist.

The average pediatric oncologist sees less than one new NB case per year.

238 US COG (Children’s Oncology Group) institutions, and if every NB case is treated at COG institution, each sees only 3 cases of NB per year.

And we wonder why the general public says "neuro-what?"

Wednesday, 3 February 2010

Blog: February 2010

26th Februaru 2010

The scans today showed up some surprises ( to us anyway!)

Rafael has Indium uptake in his skull (at the base - where bone marrow is made??) The tip of both humerus bones. In both femurs. As well as bone marrow uptake throughout body (as expected)

Prof Hicks said that the skull spot has been there since the beginning - this is the 1st we've ever heard it mentioned!!!!!!!

He also said that the spots in Rafael's legs are definitely NB and not bone marrow regeneration :-(

Also, the tumour resection was complete on the Left side, as we know. However, on the right side, in behind a bend in the bowel and near the aorta, there is tumour :-(

Could this be new tumour growth since last CT scan??? Prof Hicks did say that it is an area that would have been too difficult to get to with surgery :-(

It's just such a shock to see so much cancer still there, in other parts of his little body!! Even though we knew about most of it, with the Indium scan it was all lit up bright yellow!

Rafael is booked for another course of Indium on 20th April and they will do another Gallium PET scan just after and that will give us a much clearer picture of whether the treatment is working :-) Ah ..... only 8 weeks to wait !!!!!!!!!!!
24th February 2010
Rafael came home today!!!!!
When they checked his radiation level at lunch time, it was already down to 6, a very safe level to go home :-) Indium 111 has a very short half-life and it was expected that the levels would drop quickly, just didn’t think it’d be that quick ;-)
I headed straight in to get them!!!
We have to go back on Friday for a SPECT/CT scan and they will do a full diagnostic CT for the Children’s hospital since we missed the one last week :-)
Rafael slept well, but woke up very early needing to go to the toilet. His tummy was a little upset :-(
He called me early and asked me to bring a computer in so that he could watch his movies! I said “let’s see what the Dr says today before I head in” ;-)
Thankfully, our dear friend Goce had 1 of my computers and he fixed it, and then took the time to drive it to the hospital and set it up for Rafa!!! Can you believe that? Love ya Goce XXX
Today Domingos found out that the Indium used had been made in Holland for Rafael’s treatment, and then flown to Australia! It started losing its effectiveness as soon as it was made, therefore it had to get to Oz quickly and be administered asap! It arrived on Sunday and Rafael was infused on Tuesday. Imagine if we’d had to cancel for some reason??? Ouch!
Rafael still has to stay away from school for the rest of the week as he cannot be close to other children for more than 2 hours at a time and has to keep a distance of 1 metre if he is close for more than ½ hour.
23rd February 2010 contd.
Peter Mac were in their usual fine form today ;-) Asked us to be there at 9am, we were late - of course ;-) There room wasn’t available until after 1pm, so we had to just “hang” around all day :-(
Once everything was set up, it didn’t take long at all, about 15 minutes for the infusion via a canulla they had inserted earlier and then a saline flush afterwards.
We took the laptop from home for Rafael to watch his movies on and when I started it, the fan died and it would not work :-( :-( Rafael was NOT pleased with that at all! Thankfully Val found him a dvd player from the hospital and he was able to watch some movies ;-)
Professor Hicks came and had a chat with us while the infusion ran. He is such a lovely man :-) He even showed Rafael his own big scar across his tummy that he got as an infant at RCH!! They compared scars :-) :-)
He told us that 1 other Neuroblastoma patient (maybe 2) have started this treatment in Melbourne. They have also used it in an adult cancer similar to NB and they haven’t seen any side effects :-)

23rd February 2010

Off to Peter Mac this morning for the Indium infusion. They asked us to be there at 9am, but by the time we drop Lela off at school, we'll probably be a little late. Oh well .... ;-)

Rafael didn't have the CT yesterday either :-) After the time had passed that he should have had it, we received an email from Dr Peter saying that he was ok with Prof Hicks plan to do one in a few days time. Mingo had already cancelled the one booked at RCH ;-)

On Sunday, they all went down to Adventure Park for a family day with Challenge. It is a big water park. Gabriela loved the slides and little pools, but Rafael was freezing, even though it was a hot day :-( He made everyone play 2 rounds of mini golf - he loved it :-))) A good day was had by all :-)))

19th February 2010

Rafael lost his 1st tooth today!!! He was biting an apple and it fell out :-)

I am in LA, but the tooth fairy managed to find the tooth and I believe that she was very generous and left $5 for Rafa ;-)))

Mingo took Rafael to the hospital nice and early for his CT scan, via school to drop off Lela, only to arrive and find out the machine was broken!!! GRRR :-(

He took Rafael back to school and then we spent the day emailing doctors, at last count, the thread was 22 messages long!! CT is recheduled for Monday at 1pm. I arrive home about 11am on Monday, so could possibly make it??

Last email was from Prof Hicks saying they could do one 2 - 3 days after the Indium and use that as a baseline scan. That suits us, as long as Dr Peter is happy with that?

Haven't heard much news from home! Ivan is staying for a few weeks and the children love having him there :-)))

Erik's funeral is tomorrow. Donna posted a very moving montage on youtube

I am still in shock over Isobel's death, I think of her and her family all the time.

I think of all the other children battling this horrid disease! How do we all manage to put one foot in front of the other and keep moving???


17th February 2010

I am devastated beyond belief. The world has another NB Angel :-(

Laurel called me today and asked me to come over. She sounded upset - I thought she was going to tell me Isobel had relapsed!
Isobel went into remission in Dec 09, relapsed badly in Jan 10 and passed away 1 week later!!! How is this possible??? 1 week ?????
I am devastated :-( Poor Laurel, she didn't want to tell me because of Rafa :-( She is in a really bad way. I feel so shocked and helpless...
I HATE Neuroblastoma!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
R.I.P sweet Isobel xxx I will always remember you with your pink wig :-))))))

15th February 2010

Today is International Childhood Cancer Awareness Day. Take some time to think about how we can all change the outlook of tomorrow's children by donating to research.

So perhaps you can forgo a few coffee's this week and perhaps a lunch or two and the money saved can be donated CCIA and if you want to specifically stat...e Neuroblastoma research, please add that to the comments box at the bottom of the form.

CCIA (Childhood Cancer Institute of Australia) is a leading research organisation into the treatment of lesser researched cancer's such as Neuroblastoma.
Rafael and Mingo had to wait until 4:30pm before the injection was given :-(( Then they had to stay 2 hours for observation!! Thankfully they got out after only 1 hour :-)))

14th February 2010

AC/DC were fantastic, we had THE best time :-) We were on the lawn in front of the stage and the music was so loud :-)

Gabriela & Rafael had a great time at Tia Patrice's :-)

We met them this morning for breakfast at the Homestead. Unfortunately, Mingo, Rafa and myself didn't get to eat anything :-(

Just spent 1 hour waiting at the local clinic :-( Rafael fell over gouged his leg on some rusty old equipment :-((( It is very deep :-(

Took many phone calls to find out if he could even have a tetanus injection. Anyway, Mingo has now taken him to the E.R. where they are waiting to give his a tetanus immunogloblin as opposed to a vaccine??? Poor baby, and he was so very brave! More war wounds - ah ;-)

12th February 2010

As usual, when we think we have our lives in some sort of order and can make some plans, something changes!!! :-)))

Peter Mac called yesterday to book Rafael in for the radionuclide therapy on 23rd Feb!! So soon, wasn't expecting that! Rafael will have a chemical called Indium that has been radiated, injected into his blood stream. The aim is to attack only NB cells and leave the good ones alone. Indium doesn't extend beyond the outside of the cell it is inside. This should be a very useful tool to get rid of the cancer in his bone marrow, as it won't affect his good marrow cells and therefore, hopefully, not affect his blood counts.

He will stay 1 - 2 nights and can leave once his radiation level reaches a safe point. It is very similar to the MIBG therapy he had last year. He will be in a lead lined room and have to stay behind a lead screen. Boring!!!!!

Rafael has suddenly taken to colouring in - and we thought Gabriela was going to be the artist of the family ;-) He is doing some amazing stuff :-)) So colouring books will be the go for his hospital stay I imagine :-)

Rafael was booked to have a CT and GFR (kidney function) on 24th Feb, so now we are trying to get that done before he goes in, otherwise it'll have to wait 6 - 8 weeks after this therapy!

Dr Peter is going away and can't see us now until 11th March :-((( We could see one of the other docs, but they can't anser any of the questions we have. So it'l be email land again for us for a while ;-) Mostly we need to discuss a regime for Rafael to have his vaccinations again, as well as some trials that are open and Rafael's eligibility.

Mingo and I are off to the AC/DC concert tomorrow night - woohoo!!! We have been looking forward to this for months :-)))) Gabriela & Rafael will stay with Tia Patrice, they are VERY excited about that! xxx

11th February 2010

It is with a heavy heart that I update today :-( I arrived home from Singapore this morning and read Erik's journal. 

His sister posted the following message :-
"February 9, 2010 11:25 PM, CST
This evening at 9:35 pm Erik went to be with the Lord. And we are so happy to know now that he is not in any pain, and he is walking, and breathing the sweet air of heaven.


I am gutted. Erik fought the battle hard as a 6 year and he survived!!!! He lived another 13 years cancer free and enjoyed a full life. Then 4 years ago the beast came back to grab him, and this battle was much harder than his 1st one!!!

Why? Why? Why? That's all I can think about at the moment, as well as "It's just not fair"

9th February 2010

Rafael enjoyed his 1st "full" day of school yesterday :-) He finished at 2pm, but I sent him to the after school care until 3:30pm when I picked up Gabriela. He really enjoyed it.

He said his favourite class so far is sport (P.E.) ;-)))
After school, we went to Altona beach for another swim and play. This one is much closer to home! Rafael was happy to play in the little pools and dig for shells. Gabriela was straight off and running into the surf!

Gabriela got bitten/stung by something - probably a jelly fish :-((( She cried a lot. Thankfully, Stacey lives around the corner, so we popped over for some ice and soothing cream :-)

I found out some more info about the company that donated the bikes to Camp Quality. It is called Corporate Challenge and in 2009, the gave 148 bikes to Camp Quality, amongst other good deeds :-))) How lovely is that??

We will try to swap their bikes for smaller ones as they are both 24" and neither of the children can touch the ground and Rafa can barely touch the peddles. It's a shame, as the bikes are awesome!!!

Our day on Sunday was really fun, as I mentioned. Frankston Yacht Club hold a special day each year for Camp Quality. They have sailing (catamaran type boats), donut rides, kayaks and little sail boats. Breakfast, lunch and afternoon tea were provided as well. It was a really big day for us as it's more than 1 hr drive away :-)))

Our dear friend Julia and Gary and their 4 daughters came after lunch and we spent the afternoon watching the children play and enjoy the sun and surf!!

We thought Gabriela & Rafael would fall asleep on the way home, but they didn't! We ended up stopping and getting pizza for dinner as it was too late to think about cooking and we were too tired!


7th February 2010

A big week for our tiny little guy!!!!

Lot's to write about, but too tired after our HUGE day out today :-)

Rafael LOVES school – as to be expected!

Rafael fell over and hit his head at school on Friday :-(

I went to a surprise presentation at Werribee Mansion to receive 2 “recycled” bikes for the children. They were donated to Camp Quality and they passed them on to us. However, they were brand new!! Awesome Raleigh bikes :-))

Yesterday we took Rafa and Lela to soccer training, most of the boys were much bigger than Rafael and he didn't enjoy it at all :-(( I think he's still too weak and little and doesn't have the confidence to run with the boys :-( Lela loved it – she was the only girl ;-) :P :P

Today we spent the WHOLE day at Frankston Yacht Club with Camp Quality. We went sailing (twice) played beach ball, built sand castles and played in the water all day – we had THE best time :-)))

OK, so now I'm shattered (and a little sun burnt) so I'll update with more details and pics soon


2nd February 2010

It was a bit harder to wake Rafael up today :-))))) and we couldn't get him to eat any breakfast :-(

Daddy drove them to school and Ivan went too :-)

I enjoyed my “freedom” and went to the gym. Patrice & I did a 1 hr boxing class – ouch!! She says she's never going to talk to me again!

When I picked up Rafael, he said “I really like school” :-))) He ate his lunch yesterday and today, as well as his strawberries and drank some Up & Go :-)) He was a little tired today, but not as much as I'd expected.

Dom received a phone call from Peter Mac asking us to go to an appointment with Prof Hicks next Monday at 10:30am. We are not sure what the meeting is for. The secretary thought is was for us to have the treatment explained?? Um - didn't we do that in December??

I have written to Prof Rod and asked him what it "all means" and if Rafa has to go?? Usually when we go to Peter Mac, they don't even examine Rafael! I don't want to pull him out of school for a chit chat!


1st February 2010

Rafael started school today!!!!!!!!!!!!!!

We woke him up a bit early, at 6:30am with the kitten purring in his ear ;-) He was very happy to wake up and start getting dressed.

Until I put his socks on and he realised that they are knee length!! and that his shirt is very big on him :-( oops, should have done a trial run with the uniform first ;-)

He decided that he wouldn't go to school after all because he didn't like the uniform :-) We managed to convince him to put it all on and once he had his blazer on, he was very happy again :-)

Once at the school, we went up to Gabriela's new class first. She is a very big grade 2 girl now and she said “Mummy, you don't have to come upstairs with me, you can stay with Rafael!” Of course, we all went up anyway ;-) Gabriela's new teacher is Mr Menzies and he is very nice, + he barracks for the Western Bulldogs too :-)

We went downstairs and waited for Rafael's classroom to open. We were the first ones there :-) Rafael was very excited and when he found his locker with his name on it, his face lit up!

He sat at a table and played some games. The class only has 19 students :-) The room filled up very quickly with all of the parents. We waited for the bell to go and then we left – and I didn't cry!!!! I was expecting to ;-)

Rafael finishes at 1pm each day this week and 2pm next week.

I picked up Ivan (our cousin from Brasil) just before 1 and we both went to pick up Rafael. The children didn't know that he was coming. When Rafael walked out of his classroom, he saw me and gave me a HUGE smile, then he saw Ivan :-))))) When Rafael came out, I asked him if he wanted to come back tomorrow? He looked at me very serious and said “Mummy, we have to!”

We decided to find Lela so that she could see Ivan too. It was lunchtime and she was playing. One of her friends found her for us. When she saw me, she was like “Yes, Hi Mummy, what do you want?” Then she turned around and saw Ivan and she ran up to him and gave him a huge hug. It was very sweet :-)))

I left Rafael at home with Ivan while I went back to pick up Lela at 3.25pm. I can see that doing the school run to Williamstown & back like this for 2 weeks will drive me crazy – grrr! 25 minute drive each way :-(

Gabriela and Rafa spent the rest of the afternoon playing with the new kitten (still has no name) and watching TV with Ivan :-))))