Thursday 2 July 2009

Blog: July 2009



29th July 2009


Thought I’d better update before July is over! :-)

Gabriela and I finally arrived home last Thursday, after spending 2 days in Chicago airport trying to get on a flight to LA! Who knew it would be SO hard??? Gabriela handled it all very well :-) xxx Our luggage went to LAX on Sunday, but we didn't leave until Tuesday!!

I have loads of pics to upload soon :-)

Not much been happening here. I have written a few emails to Rafael’s doctors about possible different treatment options. His Dr from Peter Mac wrote this morning about a different type of treatment that we’ve never heard of “radionuclide therapy”. We will discuss it with Peter next visit. We still have another 8 weeks to wait for the scans to be done again – waiting, waiting, waiting …

Rafael is fine, having fun going to kindy and fighting with everyone!

He had his first psychologist visit on Monday. That meeting was more about her obtaining information about his situation etc, so not much happened.

Domingos took Rafael to the aquarium and the Scienceworks Museum last week. They had a great time :-)

19th July 2009

Hello from Chicago  Our week here has been full on - we are both very tired!

I won't write too much today as we are heading off to the airport soon, we will stay in LA for 1 night to try to break the trip up a bit.
Firstly, I must say that I was very pleasantly surprised by Chicago  Don't think I'd like to be here in winter though! There is so much to see and do, the weather has been great too. Gabriela and I bought a 3 day pass to all of the attractions and literally did not stop for 3 whole days! Aquarium, Planetarium, boat rides, bus rides, museums, skyscrapers, Navy Pier, fireworks - you name it - we did it!!

Our luggage was lost for the 1st night, but it arrived about 3:30 am!!

The Neuroblastoma conference started on Thursday night with a family dinner where everyone had an opportunity to get up and speak about their family. Such a mix of stories and too many Angel parents

The conference itself ran on Friday and Saturday. I have so much information to go through and of course, so many questions to ask Dr Peter. We had lot's of opportunity to talk one on one with the Drs here when they were nearby.
It was so nice to meet other families. We had a lovely dinner and disco on Friday night
Gabriela really enjoyed the kids room

Dom took a week off work to spend with Rafael. They had appointments at the hospital last Friday. All wen't well - no tantrums (of course!). Dr Peter could not read the scans from Peter Mac, but he was equally surprised to hear about the bony lesions in Rafael's leg. He has called another one of those "group doctor" meetings next Wednesday and the Peter Mac doctor will attend to. They will look at the scans and try to work out a new plan.

We don't see Peter again for 4 weeks and at that time, Rafael will also have his urine tested for the neuroblastoma markers. We are really just waiting now for some time to pass so that Rafa can have a GFR (kidney function test) and a CT

xxx

12th July 2009

Gabriela and I are off to Chicago this morning. I will be attending a neuroblastoma conference there later in the week. They will have a kids room for Gabriela to play while I listen to the Dr's speaking. We are going a few days early so that we can make the most of the trip and do some sightseeing ...... we are both very excited

Rafael is very well. We took them to a surprise show yesterday - Lazytown Live!! They loved it xxx

7th July 2009

Ah, 7th of July, it was bound to come around. The day that is etched in our minds and vocabulary – “D” day – diagnosis day, our world B.C (Before Cancer) was over….

Today has been emotional on a different level – I am having major problems with all things electronic!!! :-) :-) So much better than worrying about Neuroblastoma!!

Rafael was SOOOOO bored at Peter Mac this weekend :-( I switched with Domingos on Saturday morning. Rafael spent most of the time watching movies or playing with Transformers.

On Sunday morning, I took him for a big walk through the Fitzroy Gardens. He was disappointed that there was no playground there, but he had lot’s of fun running in and out of the “jungle”. We went to the little café there and he wanted an ice cream and it took more than 1 hour for him to lick & lick & lick and then he still didn’t finish the whole thing!

Our dear friend Deborah popped in later in the day for a visit. It was so nice to have some company and relive the boredom!!

By 9am on Monday we were already packed and ready for Rafael’ MIBG & CT scans :-)

They did a Geiger counter reading of Rafa in the room and the level was still 14!! Way too high :-( But still ok to go home.

Rafael did really well during the scans, it was just the last 5 minutes to go that he really wanted to get up and off the table :-)

Then we had to wait for the Dr to review the scans before we could head home.

All of the “real” doctors were away and we saw the “fellow” from Canada. French is his 1st language and he is hard to understand at times. He was very happy with the scans, but he gave me a shock with something he pointed out :-(

So, I have good news and some “not so” good news :-( ….

The good news is that the tumour appears to have shrunk approximately 10%, more so on 1 side.

There has been NO progression at all – fantastic news :-) :-)

The Neuroblastoma in his left femur has reduced in uptake – wait …. “What NB in his leg?” !!!!! 

Can you imagine this – me and a junior doctor from Canada, sitting, looking at scans and he drops a bombshell like that!!! I asked him why we have not heard about this before … he ums and ahs and stutters a bit!!! Anyway, the bomb is dropped, but he happily points out that that the uptake of MIBG is less and that’s a good sign! He thinks that the diagnostic MIBG scans at RCH have not shown the presence in this area due to the fact they use a lower dose of radioisotope. However, he doesn’t know why no one form Peter Mac has shown us this area before :-( :-(

I did manage to get him to print a copy of the scans so that I could show Domingos. I have posted it in the photo section. There are a few different scans to look at . In the first level is where MIBG has been uptaken. The 2nd row is CT and the 3rd – glowing bits – are also MIBG but with a different computer tool.

I will also post some photos of our trip to the gardens last Sunday :-)

Gabriela is still away with friends to keep her distance form Rafael :-( I haven’t seen her since Saturday morning :-( :-( Luckily she is having lot’s of fun :-) :-) :-) Thanks so much, Stacey & Goce xxx

I would like to take this time to send a HUGE “Thank you” to all of our gorgeous friends … without you all, I don’t know how we’d have gotten through the last year xxx 

Love you all xxx

3rd July 2009


Rafael coped well with his 3rd and final dose of MIBG. We arrived a bit after 11am and they didn’t get a room until about 2pm and started the treatment about 3:30 pm!! Long day.

We all went in together, then I took Gabriela off for a surprise – Disney on Ice, Princess Wishes :-) She loved it and was so surprised, as I had not told her anything about us going :-)

We briefly stopped in to see Rafael on our way home, but couldn’t keep Gabriela there too long due to all the radiation bouncing around.

We ended up with a single room :-) Poor Olivia and her Mum, they waited all day, only to find out that her platelet’s had dropped too much to do the treatment, so they went home :-(

The Dr said I can take Rafael to the Fitzroy Gardens on Sunday for a play :-) I hope the weather is not too bad :-(

Also, here is a long overdue, brief explanation of MIBG therapy, to clear up some confusion amongst our readers   :-)

  • MIBG stands for Meta-Iodo-Benzyl-Guanidine.
  • Before injection, the MIBG is attached to radioiodine (I-131). This is a form of iodine that is radioactive. The MIBG chemical is taken up by the cancer.  The cancer cells are then killed off by the radioactivity.
1st July 2009

I was in the middle of packing Rafael’s bag to go to hospital tomorrow when the hospital called to delay it a day. It seems that the radiation won’t arrive from Sydney until Friday + they are having big problems there trying to find 2 rooms. Rafael is having his treatment at the same time as another little girl, Olivia.

If we don’t hear from them tomorrow, then all is set for Friday, however, we all might have to share a room!!! Great :-(

We didn’t win the lotto jackpot – boohoo :-( :-( ah, but it was nice to dream.

The 1st week of school holidays has been ok. Gabriela has had a fever on and off since last Saturday night :-( We all went to see Dr Cong on Tuesday to have a flu vaccine shot. I put angel cream on both of their arms beforehand, but they still both cried and said it hurt :-( Then I had mine and didn’t even feel a thing!! What was all the fuss about”???

The social worker from RCH finally got back to us about a local psychologist who can do some work with Rafael and us. The biggest problem we have is that when Rafael is in that huge tantrum/violent mode, there is NO way to reason with him at all. So we need to talk to a professional and find ways to “negotiate” with him :-) Now we just need to get a referral from Dr Cong (16th July) and then wait to get an appointment with the psychologist!!

I took some photos the other day after wetting Rafael’s hair. Usually he puts his cap on straight away, but I convinced him to let me keep it curly long enough to take some pics – too cute :-) :-) 



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