Sunday 22 February 2009
Tuesday 17 February 2009
Thursday 5 February 2009
Blog: February 2009
We have had a pretty “normal” week here :-) :-) :-) Rafael has been to kindy 3 times! He is doing very well; I think he is one of the oldest children there.
Rafael has his appetite back :-) :-) He still doesn’t eat much, but compared to the last 6 months, he is eating lots!!
Rafael’s hair is growing back too – it’s so cute, just like a newborn baby.
We are even starting to plan a birthday party for him. We had given up on the idea as we thought he would be in transplant. He has chosen a T-Rex theme (surprise, surprise) :-) :-) It will be on Saturday 28th March 2:30 – 4:30 , everyone is welcome. Send me a message if you want details xxx
The weather has been kind to us, but still no rain L Our trees are all dying – boo hoo! Today is predicted to be as dangerous as Black Saturday – let’s all pray that it is not!!!
We went to Peter Mac on Wednesday to meet the radiation oncologists. We were told to be there by 8:45am . We didn’t leave until after midday – with no answers L It was really a waste of time. The doctors didn’t have hard copies of Rafael’s scans and therefore couldn’t make any sound judgements. They made lots of phone calls to the Children’s hospital, but to no avail.
They didn’t even need to see Rafael, so he happily played with the music therapist all morning :-)
They didn’t give us any news, and they seem very casual. If they think they can do the MIBG, they will call us back for an appointment (no need to bring Rafa???) and if they can’t do it, they will give us a call to discuss their reasons (no need to go there!)
We wrote an email to Dr Peter Downie about it all, and he is going to chase it up and try to find out what is going on there!!!
All plans have changed – again!!!
I have to go back to Tuesday to tell this story …
I spoke to Dr Peter Downie and he told me he had emailed a doctor in Seattle to get his opinion of what chemotherapy drugs could be used to replace the 2 that Rafael can’t have now due to his impaired kidney function (Carboplatin and etopisode). We are still waiting for a response. Peter told me he would call me back on Wednesday with some details. He said that if they just used Melphalan, it would be strong enough to knock out all of Rafael’s bone marrow on its own.
I owed work 45 hours from sick leave in June/July/September. I was available from Wednesday this week to be on call. I waited all day for Peter to call, but he didn’t :-( By that evening, work had assigned me a trip leaving on Friday night, returning on Sunday night. I just could not get my head around Rafael being in hospital with Dom and possibly being very sick, as well as Gabriela not seeing either of her parents for the whole weekend. Therefore, I had to drop all of those hours :-( ouch!! But I just couldn’t have gone away :-( :-(
I took Rafael to the Werribee Zoo on Thursday and we had a great time J He loved the “baby jaguar” (a big cheetah), the meerkats and the lions :-) :-) On the way home, Rafael said he wanted to go to Nanna’s. I should have been at home packing all of the things he would need for the hospital – but I just couldn’t do it. Before I knew it, it was time to pick up Gabriela from tennis. We arrived home about 5:30pm and Nanna dropped Rafael home at the same time. I was getting ready to rush around, give them a bath etc and then finally start to pack.
Dr Peter Downie called at 6 pm to say that he didn’t have an answer from the USA
Peter had a good chat with me and coincidently, Dom walked in the door soon after and was also able to chat with Peter. We made an appointment to see him on Friday.
On Friday, Peter went through everything with us again. The PET scan from last week was all negative – meaning that it showed no metabolic activity :-) :-)
We received some very surprising news too – Rafael’s urine now shows NO sign of neuroblastoma!!! His levels were all back to normal – that was amazing!
Rafael is being referred to Peter Mac hospital now where another doctor will take over his treatment from MIBG therapy. However, that is not guaranteed either, as there has to be active disease for it to work. We will meet with them next week.
So for now, Rafael’s stem cells will stay frozen, there is no plan for now to do the transplant, he will have MIBG therapy (internal radiation), then he will go straight to vaccine and Accutane (oral medicine) for 6 months.
After that news, we were very happy to not be going into hospital as we had a lot of reservations about their shortened plan. Yet, we still don’t feel like we can celebrate. It feels like it’s getting close though :-)
18th February 2009
For those not familiar with koalas, they usually get their water from eucalyptus leaves that they chew. When Sam was found, she drank 3 bottles of water, given to her by the fireman!
17th February 2009
As you can see, Dom didn’t update L Nah, just kidding; there is no real news at the moment.
I went to LAX last Thursday and Dom took Rafael for his PET scan. Rafael did very well as he had to lie very still for more than 1 hour :-) :-) We don’t have the results yet.
Our friends Lucille and Patricia had promised to take Rafael to the zoo on Friday. He went to day oncology first for his dressing change and was singing the “I’m going to the zoo, zoo, zoo…” song!!! How cute! As it turned out, they gave him the choice of the zoo or the aquarium. Considering Rafael’s love of sharks, you can guess which one he chose???
It seems he had lots of fun and was spoilt way too much and came home with a new stuffed toy – a baby shark :-)
I was back by Sunday morning, feeling like a truck was reversing over me :-( Those flights are so hard on your body!!! But I had a brief, well deserved break :-)
We are all still in a lot of shock here in Victoria over the tragic bushfires :-( It breaks my heart to read about children who have been left orphans, all of the people who have lost everything and the beautiful towns that are just gone. It is all so sad :-(
I had to take Pipoca to the vet today to have his dressing removed. However, the cheeky boy managed to chew one down last night and gave a really good bite at trying to pull the stitches out (they are actually staples!). Now he has a plastic bucket on his head :-( Not happy!
We found out today that Rafael will go to hospital this Friday, have 1 dose of chemo, then his stem cell transplant on Monday. We are very concerned as they have cut off more than 2/3 of his expected chemotherapy! What does this mean? Why? We are still trying to get in touch with his Dr :-(
11th February 2009
Gee, what a horrible week :-( The news from the bushfires just kept getting worse and worse :-( We here in Victoria Australia
We are all well and doing fine :-)
Rafael was happy to go to kindy on Monday, a little sad to wake up so early to go on Tuesday and is looking forward to going tomorrow.
I tried to study the last few days for my emergency procedures exam today :-( That did my head in! Thankfully, I only got 1 out of 50 wrong and am now certified to fly again :-) Therefore; I am off to LA tomorrow morning :-)
Rafael is having a P.E.T. scan tomorrow which he hasn’t had before; I hope it all goes well!
I will be back on Sunday. I doubt that Domingos will update, but would be happy if he did ;-)
xxx
8th February 2009
Well, the weather bureau was WRONG …. It got to 47.3 here yesterday!!!! The wind was shocking, we felt like we could not breathe if we went outside.
Gabriela had 2 hours of gymnastics, but we did not even attempt to go as it was so hot by 10 am and very windy :-( :-( We opted to stay indoors with air conditioner on and try to beat the heat!
Very sadly, the news today is showing how shocking a day yesterday was
- Hottest day EVER in
- No rain for 34 days
- Northerly winds up to 100 kph
- At the moment, more than 65 people have died in the fires :-(
The cool change came through very quickly before 5 pm and the temp. dropped about 11 degrees :-)
Patrice invited us to her house for pizza and as she was making the, the power went out (again!)
The news is truly shocking! The devastation is enormous and the dry conditions continue.
7th February 2009
Yeah – the weather bureau has changed the forecast for today! Instead of 43C, it’s now going to be a scorching 44C :-( :-( :-( On the news yesterday that said that NSW (a state of Australia Melbourne Melbourne
We had our meeting with Dr Peter yesterday. The MIBG scan showed a small area of uptake in the abdomen, a bit different than the last scan, but still the same area of Rafael’s main tumour. Peter was not sure if MIBG therapy would still be an option. While we were there he called the head Dr at Peter Mac (hospital) and they discussed in length some different options. He gave Peter the idea to use a P.E.T. scan to get another “picture” of what the cancer is doing and also said that MIBG would still be possible.
Rafael is really well at the moment, a bundle of energy. He only weighed 13.4 kilos yesterday (96.6cm tall) but he has been eating ok’ish and I thought he might have put on some weight L His current addiction is crumpets with vegemite :-) At least I can slather them with margarine. Tinned spaghetti for dinner is not fattening enough (I think) Wish he’d get back to the cheeseburger addiction!
The plan now is for Rafael to have the P.E.T scan next week and then be admitted on Wednesday 18th February to start his high dose round of chemotherapy and then have his stem cells transplanted on Monday 23rd. After that, the length of time he will be in hospital (in isolation) depends on his blood counts and how long it takes for his bone marrow to grow again. But we are looking at 4 – 6 weeks :-( :-(
How do I tell him he has to stay that long??? I can’t :-( When he was sick in September, he asked every day when he could go home and then he just gave up asking at all! I do need to give him some warning this time, have him prepared for it. We will take a lot of stuff from home and maybe get some posters and kid’s drawings to put up on the walls.
We will work out a small regime of visiting through our friend Simone. Even though Rafael won’t be able to receive many visitors, I know we could sure use a familiar face and a cuppa every now and again. The hospital is so isolating for us all :-( It is going to be a tough slog, but hopefully we can make the time pass faster and we will all be home together again by the end of March J I hope we are out for Rafa’s birthday!
I am going back to work this week. Well, first I have to pass my emergency procedures exam on Wednesday! Then I fly to LA on Thursday with a great crew and arrive home on Sunday morning J So far, all looks good for me to go J
Happy weekend – and to our friends all over southern Australia
5th February 2009
Happy 9th wedding anniversary Mummy and Daddy
4th February 2009
What a roller coaster week so far, and it’s only Wednesday – I want to get off!!!
Monday was a great start. Gabriela went back to school in Grade 1 with her new teacher, Mr Thompson. She is with her friend Bella and her "boyfriend" Connor (whom now she tells me is not her boyfriend anymore!)
As per typical Gabriela fashion, she was more than happy for us to leave her “to it”!!
On Monday afternoon, Rafael started at his new kindergarten :-( Even though he has already been to 4 year old kindy, this one is new and he does not know anyone, and the class size is much bigger. This week was just an introduction and the class was small. However, he still didn’t want me to leave and was hanging onto my leg – not letting go!
After some time, the teacher and I managed to convince him I would be back as soon as I had picked Lela up from school. He ended up having a great day and did some paintings as well as playing with trucks and cars :-) :-)
We all had to get up early on Tuesday so that we could drop Gabriela at school before heading into the hospital for Rafael’s bone marrow aspirate. Domingos must have had some sort of “premonition”, because at 6:30 am he said “I’m coming to the hospital with you and Rafael”.
All went well, we explained to the anaesthesiologist that Rafael needed to wake up VERY slowly. They even gave him a pre-med of midazolam to help. We got there at 09:30 am and he didn’t go into surgery until 11:30 am . By that time, he was very high and happy from the med. It was soooooo cute to see him like that :-)
From there it would normally take him a minimum of 45 minutes before he starts to wake. Therefore, Dom & I went downstairs to eat – big mistake! We were only gone for less than 30 minutes and already Rafael was waking up! He was thrashing around the bed and being his normal “post anaesthetic” self :-( :-( :-( He woke up very quickly but was in that state where no one can reason with him. Beth, the music therapist was there, trying to help in some way. Rafael just wanted us all to go away and not touch him or even the bed. The nurses tried to put extra pillows around the bed so that he didn’t hurt himself, but they all ended on the floor.
Eventually they called the Dr back and he wanted to try to put Rafael back to sleep, but they needed to access his central line to do it, and there was no way that Rafael was going to let anyone near him! He gave me a good bite on my hand :-( Rafael managed to get off the bed and started trying to run down the hall. He spent the next hour there, on the floor, yelling at us all to go away, leave him alone. He didn’t want to go home in the car, he wanted to walk and that was it!
Whilst he was in the process of giving me some punches to the legs, he got hold of my arm and gave me a really good bite!! That was enough for me, I left Dom to try to deal with him and went and sat by the lifts L As the time passed, Rafael slowly got a bit better – but I mean SLOWLY! The nurse got a DVD player and sat near him on the floor with it. That piqued his curiosity and eventually she got him to sit with her, and then sit on a bed to watch Nemo :-) Hallelujah!!!!!
I got very angry with the Dr because he did not take us seriously in the morning when we explained that Rafael NEEDS to wake up slowly!! They did not have Rafael’s history there, so did not follow the previous anaesthetist drug chart. I told him “that was no excuse”, isn’t that what histories are for?”
They eventually had Rafael’s histories sent up and went through every chart and realised “oh, we should have had this information before”!!! They wrote a report for us to give to any anaesthetic in the future, as well as a card – basically saying NOT to start any procedure without having ALL of the histories there. We finally left the hospital about 2 pm. Thank God that Domingos was there xxx
We received some fantastic news on Tuesday when we got home :-) Domingos’ brother has been successful in finding a job and will start soon!!!! Yeah :-)
Pipoca (our dog) had his follow up appointment at the Vet to get his weekly injection at 5pm. Rafael and I went to the shopping centre and met Nanna there for a couple of hours. I went home to drop off the refrigerated items before heading out again to visit Simone. When I got home, Pipoca wasn’t around, getting all excited like he usually does. I found him next to the house, just sitting there next to the decking, looking at me and wagging his tail. He couldn’t get up onto the deck (2 steps), he couldn’t use his back legs :-( :-( I called the Vet and their first thought was “snake bite?” I took him in and at first the Vet wasn’t sure, thought maybe it was muscular, definitely not snake bite – yeah!
After some more examination, he suspected that Pipoca had now ruptured his left cruciate ligament as well :-( :-( I left him there for a general anaesthetic, X-ray and exam. I went back at 5pm and the Vet confirmed his diagnosis :-( :-( There is only 1 vet specialist in Melbourne who performs the recommended surgery Pipoca will need. The other day they told us it would be about $3000 - $5000 for the right leg, so I was dreading what they would say about 2 legs!!! The Vet checked with the other Vet and it seems he can do both legs at the same time for about $5000 :-( :-(
So, that has been our week so far! We are going to speak to Lort Smith animal hospital and see what they say about the surgery and the cost. It’s hard to know what to do? Pipoca is only 8 years old and had been with us since before the children were born. We all love him so much, but ….. $5000?? I’m due back at work next week, so I guess there will be less shopping in LA for me – hehe. We have to carry him around as he can't walk at all, it breaks our hearts to see him like that :-(
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