Well, keeping them apart is not as easy as it sounds! I managed for ½ a day as Gabriela had gymnastics in the morning. The rest of the day was spent asking “Lela, are keeping away from Rafa?” and saying “Rafa, keep away from Lela, go play somewhere else”!!!!
Rafael is doing very well, no effects at all. His appetite is good :-) Last Monday he weighed 14.25 kg and has grown to 98.5 cms :-) :-)
Rafael slept well. Dom said it was the most comfortable hospital bed he’s had yet, but he didn’t sleep well at all :-(
The day was spent just waiting for Val to take Rafa’s reading again to find out if we could go home. She did say that they often let the children go a little bit early, as they know home is a better place for them than being stuck in Peter Mac.
However, that would mean that he has to keep at least 1 meter away from Gabriela at all times and that neither Gabriela or myself are allowed to get pregnant within the next 6 months!!! Haha – how funny :-) Basically, until Tuesday we have to try and all keep as much distance form Rafa as possible.
Good news, they let Rafa come home early :-) The reading was 16 and it should be 9. We have to go back on Tuesday to see a different doctor and have a MIBG scan.
Lela went to Patrice’s house while I picked up the boys, then she stayed there until later in the night. Rafael enjoyed a big bath all on his own J Patrice told me I have to send money with Gabriela next time as she ate 3 – yes 3, whole plates of mashed potato, pasta and meat!! That’s it, I’m sending her to Patrice’s every day to eat! Don’t care how much it costs :-) :-) Beijos Patrice xxx
The big MIBG therapy day arrived. We didn’t really know what to expect, but it was quite “casual” in a way. We arrived at the hospital at 10am and didn’t see a Dr until after 11:30 – we should have known!
Rafael’s room was a normal hospital room, great view of the MCG and Fitzroy Gardens
companions don’t sleep over, just visit, so there were very few facilities for Dom or I to use. We were on the 9th floor and the toilet for us to use was on the ground floor :-(
Dr Ram was in charge of giving the treatment along with Val. They are very experienced at it and made it all seem quite simple and stress free (which it was). They started about 2:30 pm and said it would go for 1 hour. Actually, it only took about ½ hour. Dom had to walk to Collins St
After that, Rafael was disconnected and could jump around on his bed, look out the window and watch DVD after DVD after DVD as there was nothing else to do. He had to stay behind the lead barrier at all times except to go to the toilet. Anything that was in the room had to stay there and food was delivered on disposable trays. Dom stayed the rest of the time with Rafael. Dom was working, but I think Rafael was very bored.
Val took his radiation levels with a Geiger counter. I don’t know what the measure is, but at 2 metres, Rafael was 100 (whatevers). Once his level got to a predetermined point, then he would be considered safe to go home and be in the general public ish.
HAPPY 5TH BIRTHDAY RAFAEL!!!!
XXX
Rafael had a GREAT birthday J We woke him up early, before Lela went to school so that we could give him his presents. He got a remote control Ferrari, a cheetah Transformer, some Thomas carriages and a Raphael ninja turtle. The Grand Prix is on this weekend and Dom found a stall in the city selling children’s size caps. Now Rafael is over the moon as he has a red hat – with a Ferrari symbol!! :-) :-)
Gabriela arrived home from school about 4 pm and just after that, a big surprise arrived for Rafael. Deborah had contacted the local CFA and managed to convince them to visit Rafael at home!! They even brought a child size fireman uniform for Rafael to use during the visit – too cute! They even let Rafael and Gabriela turn on the lights and siren – to the shock of our neighbour who came running out wondering what the problem was :-) They went for a ride around the block. Adrian Adrian
Rafael knew a few people were coming over to wish him Happy Birthday, but didn’t stop asking me “when are they getting here????” We had a lazy party of pizza and then ice cream birthday cake. When I asked Rafael what he enjoyed most about his birthday, he said “Nicky coming over” :-) :-) They haven’t seen each other for months, but Rafael misses him a lot :-(
Rafael has had a great week. His blood counts were still too low for him to go to kindy, but he did not seem to miss it too much.
I had to have a CT scan last Tuesday on a lump in my tummy. Don’t panic, it has been there for years and I want to get it removed now. They are not sure if it’s a hernia or a cyst. I tried to be very brave when they gave me a needle to inject the trace. I tried to be as brave a little Rafael is whenever he needs one! The first attempt by the nurse burst the vein in my right arm :-( She could not even get a vein in my left arm. Then she tried my wrist and gave up and went t get a Dr to do it :-( So 3 injections later (and lots of pain!) the Dr put it in the side of my wrist – ouch, ouch, ouch!! I had my appointment with the surgeon today and the scan was a bit inconclusive about what the lump is, but he thinks it is a cyst and is going to remove it as a day surgery which I’ll have in a couple of weeks.
On Friday, Rafael had his blood test done at home by the nurse. We called the hospital later in the day and were very surprised to find out that Rafael’s neutrophils were still very low – even after the GCSF injections :-( They gave us another appointment to come back yesterday to redo the bloods. If his counts stayed low, then he would need another bone marrow aspirate to see what is going on and that could have stoped him going to Peter Mac this Thursday. His blood test from yesterday was good J He finally has 1.06 neutrophils!!!! Dr Wood double checked with Peter Mac and they were happy with all of the counts, so now it all systems go for Thursday.
I went to Hong Kong on Friday night and the children had a fun weekend with Daddy (when he wasn’t sleeping!) They even went for a big bike ride/run/scooter ride and took Pipoca with them :-)
Rafael went back to kindy today. He had a ball! He was so excited when we got there and one of his little friends was very excited to see him too J Rafael was in chatterbox mode – too cute. The class made him a birthday card, Rafael made himself a birthday crown and at the end of class, they all sang Happy Birthday :-) :-)
We had our appointment with Peter on Friday. We went to Day Oncology first to get another blood test as well as dressing change and line flush. Peter wasn’t running too late, but the blood results took a bit longer. Rafael was in fine form, jumping all over the place and being very happy. Whilst Peter was examining him, he said that Rafael felt hot. Great parents we are – NOT!!, we hadn’t even noticed L Mind you, neither had any of the nurses in day onc!
Peter took his temp at it was 39.3! He also commented on Rafael’s cough. Therefore, we had to go off and have a chest x-ray, wait for the blood results and then decide what to do.
Blood test showed his red cell count and platelets were good and his neutrophils had come up a little bit (0.6). X-ray showed nothing. Because Rafael was so well in himself, Peter decided that he could go home J J and not have to stay again. We are beginning to wonder if Rafael is allergic to weekends as this is the 3rd weekend in a row he has gotten a fever!!
So now Rafael is taking oral antibiotics twice a day and is back on GCSF injections once per day to try to help his neutrophils.
We ended up having a rock’n’roll party at our house that night – just the 4 of us. The music kept getting louder and louder :-) Lot ’s of fun. If anyone can’t remember Jenny’s number, check out the video of Rafael :-)
Saturday was an awesome day :-) It rained and rained and rained – 20mm – YEAH!! And guess how we spent the day – getting drenched at the M.C.G!
We bought family tickets to the Sound Relief benefit concert. It started at 12:10pm and at that time it was just bucketing down. We decided not to take the children in the morning, as the day would have been too long for them. We had tickets to the arena and it was amazing to be on the lawn, in the middle of the G! First acts were Jet, Gabriella Cilmi, Kings of Leon and Paul Kelly. We were waiting for Dr Peter to call us, but we could not have heard the phone ring at all, it was so loud! He called in the middle of Paul Kelly and I held out the phone for him to have a listen. Paul Kelly was really good and his final song – brilliant – just him, singing alone, no instruments at all :-)
Dom and I headed off then to pick up the children and Gabriela’s friend Bella. As we were driving home, it started pouring again :-( I could just imagine Stuart and Patrice, back at the G, holding our space and cursing us! We were back by 5:30 pm in time for a surprise performance – Liam Finn, Neil Finn and Tim Finn singing Crowded House songs. They were fantastic and just “blew us away”.
Jack Johnson was next, but I don’t remember much about him :-( The next band was Wolfmother and we could see the sky getting blacker and blacker and right on que, it started to bucket down again. Up until then, Rafael was sort of enjoying himself, but once we put the raincoat on him, he hated it and kept asking when we were leaving! This time the wind came with the rain and even our raincoats weren’t protecting us, so Patrice and I managed to get the children inside and out of the rain – whew! Of course, the girls then wanted to go back out in the rain with the “boys” :-) So they were in and out, up and down!
We had heard that Kylie Minogue would be there and after a minutes silence, the lights slowly went up and there she was – all alone on the stage – looking tinier than ever! She had the whole crowd – 81,000 – singing “I Still Call Australia Home” :-) I guess Qantas must have flown her in that morning as they were the sponsors of the concert and she was probably “obliged” to sing it. Even though I hear it every time I go to work, I do like that song, and to hear it at the G, with everyone singing was awesome!
Then the rock’n’roll took off!! Hunters and Collectors, Split Midnight Oil!!! What a day, what a wonderful, fun, crazy day!!! As bad as the weather was, everyone had a great time and all of the people around us were friendly and having just as much fun. Also, the live crosses to the SCG were awesome too! Coldplay - ah - what can I say? Icehouse, reformed and singing Great Southern Land!
Rafael ended up falling asleep in my arms about 8:30 pm and we joked that 81,000 people cannot wake up Rafael :-) :-) :-)
Gabriela had to go to a birthday party this morning and it took a lot too get her out of bed by 10am :-) We spent another lovely afternoon at the Waterstone Café. They had their last summer Sunday show for the season :-) :-) Rafael got to see Deborah again (she looked after him while we were at the concert)
Dr Peter called again to see how Rafael is doing :-)
Check out Rafael’s hair – beautiful :-) :-) :-) xxx
2nd March 2009
16th March 2009
11th March 2009
Sorry for the slow update xxx
I arrived home on Sunday morning and Rafael was discharged about 1:30 :-) :-) :-) His red cell count and platelets had improved, however his neutrophils are still very low.
They think Rafael is fighting a virus, but are not sure what type, or if it even is.
If his blood counts don’t improve, he will need to have another bone marrow aspirate so they can see what his marrow is doing.
Rafael got out in time to go to his friend Gabriel’s birthday party on Sunday J I was waiting outside for them to arrive, and when he saw me, he came running down the street to me :-) It was so sweet.
Our friend Stacey came over on Monday morning to take some family photos for us. Can’t wait to see them all!!!
We had our meeting at Peter Mac on Tuesday morning. Rafael is booked in for MIBG therapy on the 26th March and should be there for 1 – 2 nights only. Therefore, we had to change his birthday party to 4th April.
The plan is for Rafael to have 1 round of the radiation and see how much of it is taken up in his tumour, and what the tumour does. If that works and his bone marrow is not too damaged, they might attempt another round 6 weeks later.
Rafael’s blood counts need to improve now though before they can go ahead.
Rafael needed a finger prick blood test today. A nurse was meant to come to our house to do it, but the hospital didn’t organise it. Therefore I had to drive all the way in there just to get it done :-( 2 hour round trip :-(
Dr Peter called in the evening to say that Rafael’s neutrophils have dropped again. He has made an appointment for Rafael on Friday. He suggested that the virus could be parvo, as it does affect bone marrow. Who knows???
In himself, Rafael is really well :-) He has a croaky voice on Monday and what seemed like the start of a cold, but that went away the same day. He is showing no signs of any illness.
His hair is growing back quickly and he is sooooooooooo cute!!!! (and he knows it!)
xxx
6th March 2009
Rafael and Dom are still at the hospital. I have not spoken to them yet. This is what Dom has written via email xxx
I don't have any news of Gabriela :-(( It seems she slept at Mum's on Thursday. She had her grade 1 camp today and was going to stay at Bella's house afterwards. Lela - hope you had fun at camp! xxx
What it all means is that, I think, they do not have a clue what's happening to Rafael, I mean, why he got a temperature. Their trying to grow cultures out of his blood to correctly identify what is causing the fever or, at least, trying to rule out what is not.
Considering that no one can definitely tell me what's going on with Rafa, I cannot see us leaving hospital any time soon. They took more blood while I was typing this message. At least Rafa does not have a fever anymore. He's still asleep.
Guess what? The nurse looking after Rafael this arvo has a very unusual surname: Moraes!!! Can you believe it? Her Dad is Brazilian but from the south (Santa Catarina) so no chance to be related to us. How funny is that?
Her name is Jessica "something"-Moraes (compound surname).
And no, she can't speak Portuguese or at least not while in Australia, only when in Brasil. :)) That's what she said.
We're still in hospital. We'll be here until tomorrow for sure and likely till Sunday. So, by the time you come home, we probably won't be there. So far, no news on what could be causing Rafael's fever. Meanwhile, only waiting. He's much better though. He even went to the play room today. He's much more active, completely different from when we got here yesterday. His bloods are stable: neither up nor down. Neutrophils are still low: 0.6.
Nephrologists came by and did a quick examination on Rafael. The bottom line is that there is nothing to be done for the time being other than monitor Rafael's kidneys. He thinks that there is a strong chance that the damage to Rafa's kidneys might be permanent. However, he does not envisage any real problems for the next several years. If, evntually his kidneys fail, then that's when we'd think about some kind of dialisis.
He wants Peter Downie to organise more exams (GFR and scans) and would like to see Rafael in the next 3 months.
5th March 2009
Rafael is in hospital again :-(
I don't have any details because I have just arrived in LA and my mobile battery was flat. I will try to speak to Dom later.
Just before I left for work, Rafael's had a fever of 39.9! Luckily Dom had not got on the train yet and was able to come home and I could go to work.
It seems he still has a virus, but his blood counts are VERY low :-(((((
I'll update later xxx
4th March 2009
The doctors from Peter Mac called yesterday afternoon :) Rafael will be able to have the MIBG therapy (internal radiation). At the moment, his blood counts are still too low. We will meet them next Tuesday to discuss more details.
I keep forgetting to write - Rafa's hair is growing back - quickly!!! He looks even cuter than normal - if that's possible???
xxx
3rd March 2009
Still no news from Peter Mac :-( Will give them until tomorrow then call them!
Rafael had a fever on Friday afternoon, but he was really well. We begged the hospital if we could just give him some Panadol and “see how it goes”. But no, as per procedure, we had to take him to emergency in case he had an infection.
Due to him have normal blood counts, he was treated like a normal emergency patient – it took 3 hours for them to do a simple blood test!! It showed that he had a virus, not an infection and did not need antibiotics and therefore, did not have to stay – yeah!!! Just before he left the hospital, Domingos asked for some Panadol and that was it. 5 ½ hours later!!! Rafael’s temperature didn’t go up again :-)
We had fun going to the Waterstone Café on Saturday to wish Vince a happy birthday and eat pizza. Gabriela made Vince a huge card in the Western Bulldogs colours :-)
On Sunday we had an impromptu late lunch with Patrice and family, the children all had a blast playing together. Gabriela had wanted to ride her scooter the whole way there, but we managed to convince her that it was a bit too far :-)
Another of our friends was made redundant last week – that’s 3 people now that we know :-( Times are getting harder here for sure.
Thanks to everyone who sent cards and pictures and emails to Rafael, he loves receiving mail :-) It is a strange day here today. The weather forecast is for very strong winds (140 km/h) later on and they fear that the bushfires still burning could become huge fireballs. There is a total fire ban in Victoria today. However, it is quite cold (20C) and …… it’s raining!!!! Not enough to really wet the garden or stop the fires, but – it’s still RAIN :-)
Rafael is at kindy. He did not want to get up at 7 am and carried on a bit, but by 7:30 he was already asking me when we were leaving!
Dom, my friend, Tash and Gabi, Keep strong, Keep fighting. We will keep thinking of you and sendo our love. Take care. Ken and Val
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