29th October 2010
Well, 2 days of hospital appointments are over :)
I had to wake Rafael up at 5:45 am on Thursday so we could be at Peter Mac by 7 am, as requested, for an 8 am scan.
We arrived just after 7 only to find out that the PET centre doesn’t even open its doors until 7:45 :(
Once in, we were 1st up. I had applied numbing cream to the back of both his hands, but didn’t have enough for his elbows :(
Dr Tom thought he might be able to use Rafael’s right hand. The cannula went in ok, just a little pain for Rafael. However, once he started injecting the Indium, Rafael started crying and saying it hurt a lot. Seems that it didn’t go into the vein but into the surrounding tissue instead :(
They had only managed to give ½ the required dose; therefore they decided they’d have to use his arm instead, to finish the dose. More numbing cream was applied, another cannula inserted and the rest of the dose given without too much fuss from Rafael ;-)
Then we had to wait about 1 hour for it to run through his body.
Rafael’s class has a teddy bear named Fletcher who get’s to go home with each child and then they take pictures and write a story about their week together. This week Rafael has Fletcher :) He sat with Rafael through every needle jab and scan ;-)
The scan was fine, I had to leave the room a couple of times (while they did a quick CT). Rafael laid perfectly still the whole time!!!
In fact, he laid so still, that as the bed was being retracted, he still didn’t move – until he started SCREAMING in agony!!! We thought it must be something to do with the Gallium radiation – why was he in SO much pain??
We ran to the bed and found that his finger was jammed between the bed and the rollers :(((( My poor darling :(
Then the nurse grabbed an ice pack which was the size of a brick!! Ended up just sticking his finger in a cup of ice!
We waited until 11am to meet with the doctors to go over the results – anxious time!!!
They had to compare it to the last Gallium PET scan, which was done in December 2009 (before surgery).
So, in comparison – EVERYTHING is much fainter :))) The stubborn areas are still there, but they are very faint on the scan. What does this mean??? Million dollar question!
It means that
a *There is NO progression
b * NO new spots
c * Rafael is following his usual pattern – killing off 1 NB cell at a time ;-)
d * The Indium is working!!!
We know that the Indium will keep working inside Rafael’s body for many more months to come :)) Therefore, Peter Mac is “happy” to wait another 3 months to scan again.
Arrghhhhh!! Will there ever be a day when they say, “ No disease, can’t see anything!” Probably not with this god awful disease :(
We just have to get our heads around the fact that Rafael has cancer, it lives inside him, tucked away where we can’t see it every day, and that it is VERY slowly dying :)
I let Rafael sleep in today, as we didn’t need to be at RCH until 11:30 am. We arrived early, as we were about to walk into the pathology collection area, his favourite “finger pricker” Catherine walked out :-) She saw him and swooped him up for big cuddles and hugs :)) Then she whisked him off to her blood collection area and we didn’t have to wait in the queue – nice :)
After we dropped the blood at the lab, we went to the Starlight Room. Rafael was trying to explain how to play Mario Wii to me – ummmmm – could someone please tell him that I’m just no good at those games!!!!
We also played air hockey until the air stopped! By then it was nearly lunchtime and of course, he wanted the usual – McDonald’s! While we were eating, he started waving to someone, when I turned around, it was Dom – he knew he’d find us there. LOL
Dr Peter was only running a little late today and as we were the last patients, we got to spend an hour with him :)
The urine test results were back and the important markers for NB were all in the normal range – woo deep sigh :)
His blood test from today was all in the normal ranges too :)
However, his Liver Function Test set of a few whistles :( The lab even called Peter while we were there to make sure he had seen the result – never had that happen before!
So, it seems, that this gastro virus thing Rafael had last week is doing something strange to his liver :(
The normal range of the ALT count is ~ 55 and Rafael’s is 435+ !!!!
Therefore we had to get Rafael to donate a urine sample (easy peasy) and a stool sample (not so easy!) Considering the explosive diarrhea he’s had this week, I thought we could get a sample quickly – but all was ok, by the time we were ready to leave the hospital, he had helped me out ;-)
Peter didn’t have any written report from Peter Mac, so he just had our interpretation of the meeting yesterday to go.
He is in semi agreement with them about waiting 3 months. But he said he’d prefer 2 months.
We discussed many different option about what we could do now, or in the future, for kill off these last stubborn cells. None of the options are really that appealing at this stage.
So, as expected, we are on the “wait and see” path again.
We will keep seeing Dr Peter every 4 weeks. We will discuss with Prof Hicks whether to do a Gallium PET again, or maybe do an MIBG scan?? Who knows!
We still had to pick up Gabriela from school, so Rafael joined his class for the last ½ hour :) We went to the playground across from school and they both enjoyed a run and a play with their friends :))))
I took a few photos of Fletcher having all his procedures done, will upload soon.
xxx
25th October 2010
My poor sick little family :-((
They have been struck by a 24 hr gastro - very violent :-(
Last Tuesday, Gabriela was the 1st to go down. Poor darling, she threw up all over her bed and herself during the night :-(
She stayed home with me and slept until 2pm! She also stayed home from school on Wednesday. I got sent to LA :-))) So Dom was left "in charge" ;-)
On Thursday night, Rafael was the 2nd to go down and unfortunately, that meant he was unable to go to his 1st Prep Camp on Friday with school :-((( He actually wasn't too fussed, was feeling to sick to worry!
By Saturday morning, Dom had it too - nothing like sharing hey?? So he spent the day in bed and left the children to fend for themselves :-((
I arrived home on Sunday morning, to a house that looked like a bomb had hit, but everyone on the mend :-)
Rafael did the sweetest thing - whilst Dom was being sick (at least 5 minutes in the bathroom) he waited patiently outside the door with a glass of water for Daddy when he came out :-)) Brought tears to my eyes when Dom told me ;-)
Everyone is back to school and work this week. However, Rafael will miss Thurs and Fri due to appointments and then Mon and Tues are holidays, so he'll get a week off!!!
He has a surprise on Saturday night - his friend Jeremy and family are taking him along to see the Krusty Demons!!!! I'm sure he is going to love it :-))
I am right into "scanxiety" mode now :-(( I just want Thursday to be over with, now!!!!!
xxx
16th October 2010
Hello, sorry for the late update - busy week :-)
They arrived home last Tuesday night, they even managed to get an earlier flight out of Sydney and landed at 10:20 pm - to freezing weather :-(
I was there to meet them - I only cried a bit, their loving hugs were so precious!!
Everyone had a very late night, I think it was 2 am?? Rafael's bag is still lost :-(
Gabriela has had the hardest time adjusting to the time zone, she falls asleep about 6:30 pm and is awake at 4:30 am ;-))))
Rafael had a great week, we didn't send him to school, but each day he went to swimming lessons with his class - yes, more swimming!! He was so happy to see his friends and play with them a bit!
Gabriela had to go back to school on Friday as it was Grade 2 camp! The weather was shocking, it rained and rained and it was so cold. Lucky the camp was indoors and they all had lot's of fun :-)
We saw Dr Peter yesterday, just a check up really. Rafael is now 16.5 kg and 106 cm tall - yeah!!!!!!!!!!!!!!!!!!
We are now seeing Peter again the day after the Gallium PET scan, to work out a plan from there, based on the results. We did do the urine test today (since we were there) and will get those results on the 29th.
Other than that, Peter didn't have much to say, except how good Rafael looks :-))))
11th October 2010
They are on the way!!!! :-))))))
I received this brief email today:
We are in Sao Paulo now. The bad news is that they've lost one of our luggage. More precisely, Rafael's. Bloody hell!!!!!!!
Let's see what happens tomorrow. Too tired and annoyed now.
Let's see what happens tomorrow. Too tired and annoyed now.
10th October 2010
I am back from my LONG trip, felt like I was away for ages :-(
I was devastated on Tuesday night to learn that Lucas' gallium PET showed that he has disease progression :-( I felt so alone and far away :-( They (we are all) waiting to hear back from Prof Hicks as to the next plan xxx
Not much news - again - from Brasilia :-(
Here is a rundown of Dom's brief emails:
Hi Tashinha,
Alessandro: I went to his house yesterday. It was good to see him. I was a bit anxious about seeing him like that. I think I prepared myself so well that I was able to see him and talk to him without any anxiety. It was just like seeing my good old friend. It was very sad to see him like that though: no ability to talk or walk or hold his head high. But he's still my good old friend. He hasn't been out of the apartment since May. Tonight, Tuesday here in Brasil, he went to Banco Central for the launch of his new children's book. I took the children with me. They had a good time running around with Alexia and Alessandro's two daughters. Actually, yesterday, the four of them (ours and Alessandro's) clicked so well. Sonia was impressed. They played and played and played. Tonight, they met again and played even more. It was nice to see them like that.
Then last night I went to Porcao with Laranja to celebrate 1 year of our world championship in Australia. We had more than 20 people. It was good fun. Children were not interested at all in coming. When I got home at midnight, they were still awake waiting for me :)))
This arvo Juliana picked me up and took me out for lunch. Once again, children were not interested at all. They simply don't want to go away from their cousins. I'm in no mood to fight because of that. So I let them stay with the family.
and
Yes, we are get ready to leave. Not too sad yet, just sorry that it is finishing. But I'm ready to come home by now. So are the children, although I think Rafael will miss all this craziness here, more than Lela.
It's very hot here in Brasilia now. It's almost 4:00 pm and children are in the swimming pool while I'm watching friendly game on TV, Brasil vs Iran.
Last night we went to Ronan's house.
Tomorrow I will try to do the last shopping and on Saturday take the children for some photos at the Cathedral and surroundings.
Friday night we might have a farewell drink with the family, but I think I won't see any of the friends again until next time. :((
and
I've started packing. It's not going to be easy, even though I think I've not bought that much. I think I need to just use the backpacks that we've brought more wisely. :)))
My parents are starting to be impacted by our leaving. Four weeks have gone by already. That's amazing. The great thing is that the children had a great time and were able to catch and enjoy their relatives here in Brasil. And Gabriela's understanding of Portuguese has increased a lot. Rafa's not so much. But he's tried.
We'll have part of the family and Paulinha coming here tonight to say goodbye. Then, that will be it. A small BBQ tomorrow for lunch and off to São Paulo. Yes, it's going to be very sad leaving my family again, but it will be very happy seeing you again. We all miss you a lot. Children and I can't wait to get home as well as not willing to leave. Talking about split feelings :)))
By the way, children are wild :))) Be ready!!! They're wild but very happy. They're very loud.
1st October 2010
Hello, I don't have much news from the family :-( They are back in Brasilia. Their last day at the beach was mostly spent in their hotel room watching tv and eating pizza - they were worn out from swimming all day for a week ;-)
September was Childhood Cancer Awareness month, but you are all aware, each and every day, what's it's like for a child to live with cancer and for their families who have to travel that road - thank you so much for sharing our journey.
I am going away on an 8 day trip tomorrow, so the updates may be a little light on ;-) The good news is that I get home next Sunday, and will be home to pick up the family on Tuesday night, as well as spend the rest of the week with them before I have to go back to work!!!
The sun has finally started to shine here in Melbourne, spring has arrived!!! I even managed o get out in the garden yesterday and do some weeding. After fighting with the lawn mower 1/2 the day, I finally got it started and did the lawn and nature strip - unfortunately, I couldn't turn it off!!! Had to keep mowing over and over until it conked out ;-) LOL
I will have a supply of Ribbons for Ruby to start selling soon - please let me know if you want to sell/buy any??? All money raised will go to YAMS http://www.yamsfoundation.org.au/
We see Dr Peter on 15th October and the "big" Gallium PET scan at Peter Mac is on 28th October and we are meeting Prof Hicks afterwards xxx
