31st January 2010
Rafael starts school tomorrow and Gabriela goes into Grade 2 - can you believe it??? :-)))
We have a new (as yet un named) member of our household - a black & white kitten :-)) He has already managed to give 3 of us some good scratches :-)
All school bags are ready, clothing is ironed and everything is labelled :-) Just have to make the lunches in the morning! Rafael is SO excited!
We had a meeting with his new teacher and his 2 head's of school last Thursday. They are all aware of what Rafael has been through and what are our major concerns for him being at school. His biggest problem is that he doesn't have any vaccinations anymore :-( So things like chicken pox and measles can affect him quite quickly and nastily :-( Should be ok though as most other children have these vaccinations.
Had a huge day today! Drove for 1 hour across town to Alexia's 2nd birthday party :-) It was in a park, but there wasn't much shade and the temp was 37C. Rafael didn't cope well with the heat at all :-(
Tonight we went to the Waterstone Cafe for dinner and dancing :-) Was a nice way to end the holidays :-))
Thanks again for all of your messages of love and support.
The journey has been harder and longer than expected, and we are still going. But life seems to be coming to a stage that is almost "normal" ;-)))
28th January 2010
I shouldn't leave it so long between updates as it's too much to remember and write in 1 go!! Especially when a lot's been happening :-)
When I arrived home from Hong Kong on Saturday night, everyone was still up! Dom was on the phone to the hospital as Rafael was running a fever again. Thankfully it never goes above 38.5 :-) Therefore, he was able to stay home with us monitoring him closely.
Domingos took the children off to a birthday party and I spent 2 straight hours trying to tidy up our house which looked like a bomb had hit it – and I was only away for 2 days – arghh!!!
Towards the end of the party, Rafael was looking generally unwell again. His temp was still the same ~ 38 so we ended up giving him Nurofen anyway.
Then we headed of to the circus!! It was a Silver's circus, lot's of acrobatics, juggling and magic tricks. The children got a bit bored after a while, but the finale enthralled them – motor bike riders inside a small cage :-))))
Domingos took a holiday on Monday and we finally took Rafael swimming!!! Unfortunately the water was very cold (so called indoor heated pool!) He was shivering a lot :-( When we 1st got there, Rafael jumped straight in the pool, no fear at all. Except he forgot how to swim and was going under quickly! Dom had to jump in straight away to rescue him! We all had a great time and Rafael tried hard to swim as much as he could and he really enjoyed it. Rafael was nearly turning blue! We decided to go play in the spa as that's usually warmer, but alas, not that day :-( We took Rafa out and gave him a hot shower, but he was shivering away again as soon as got back in the spa, so we decided to leave early. But at least we got to all together and enjoy Rafael's 1st swim in 18 months :-))
My cousin is visiting from Adelaide and we had a nice dinner together on Monday night. Robby bought Rafa a pirate book with a ship that needed to be assembled. They could not wait for her to do it the next day and Daddy had to help finish it off :-)
Tuesday was Australia Day and a holiday. I think Mingo had plans of staying in bed all day and doing nothing ;-)) I had to work and left home before 7 am. Stacey called on Monday inviting us to go for a drive to Torquay. At 1st Mingo didn't like the idea (as it'd cut into his sleep time!), but I convinced him it could be fun for him and the children.
So they all headed off nice and early and ended up driving to Lorne instead. Apparently they all had a great day, but Rafael didn't really want to do anything and refused to eat all day :-(
Later on they went for a swim in the ocean, but Rafa just wanted to play on the beach :-)
In the evening, when everyone was tuckered out after their long day, we went to Altona beach to watch the fireworks! We watched from the pier and the fireworks were let off from the beach, so we were very close and they were very loud!
Last night Rafael had his 1st official sleep over :-)))) Woohoo!! He was so excited and kept asking me ALL day what time he could go!
His friend Daniel lives just around the corner and their other friend Gabriel was also staying over. They had lot's of fun playing Wii and eating pizza and pao de queijo :-)
Simone called in the evening to say that Rafa was running a slight fever – 38, but after that it went down and he was fine :-)
I called this morning and the boys had all woken up super early so that they could continue playing Wii :-)))
Rafael was very cheeky – Tia Simone offered him cereal, pizza & pao de queijo for breakfast. He turned to her, all serious and sweet eyed and asked her for Beijinhos (little kisses – made from condensed milk and coconut)!!! How could Tia resist??? So of course, she made them for him !!!
22nd January 2010
Gabriela slept at a friends house on Wednesday night and Rafael didn't like it one bit!!! He's sad now when Lela is away :-( So I have arranged a surprise sleep over for him next week at his friend Daniel's house ;-) - ssshhhhh
After we dropped Gabriela off, we went to have Rafael's hair cut - FINALLY!!!!! He was very excited and sat very still and quiet while Maryanne trimmed his locks :-))) We actually did not cut too much off, just an all over neaten, but he was so excited!! First haircut in 1 1/2 years!!! Woohooo
For dinner, Rafael really wanted pizza, but we didn't have any at home. The night before at the ER he asked for sausages with sauce, so I convinced him to have them instead. He agreed, so I defrosted them. As I was getting ready to cook, he said to me "please tell the man that makes the pizza that I want margarita" !!!! He could not get pizza out of his head :-) So I managed to contact Mingo on his way home and he stopped and bought it for Rafa :-) and he ate 2 slices!!!! Yippeee :-)
We had our appointment with Dr Peter on Thursday morning. First we had to pick up Lela and then head in :-)
It was strange as we are so used to going up to day oncology to have a line flush and dressing change. Now that Rafa's central line is removed, it was weird not to automatically go through that routine!!
We caught up with Karen who's daughter Charlize just had her stem cell rescue. She is doing really well :-))
Dr Peter had good news for us - the pathology results of Rafael's tumour were back. Most of the tumour and some lymph nodes were ganglioneuroblastoma!!!
Ganglioneuroblastomas are a mix of malignant neuroblastoma and benign ganglioneuroma tissues; they are sometimes called transitional tumors:-)
If you look at this link, it explains in more detail the differences in tumours - http://emedicine.medscape.com/article/340723-overview
Basically, there are 3 types -
1. Neuroblastoma - aggressive
2. Ganglioneuroblastoma - 1/2 malignant & 1/2 benign
3.Ganglioneuroma - benign
Now that the tumour is gone, he will have another CT scan late Feb to see what what was left behind.
Now we just have to get rid of the beast in his bone marrow!!!!
We have already spoken to Prof Hicks at Peter Mac and he is planning Rafael's for the radionuclide therapy. He said he will be in touch when he works out the logistics!!
More good news for Rafa yesterday - his platelet count was 220!!!!!!!!!!!! I truly cannot remember it ever being so high since diagnosis - I was very surprised :-))
Rafael starts school on 1st Feb - I'm sure I'm going to cry a lot :-((( But he is in a great "place", he is well, his blood counts are good, his wound is healing and he has his central line out :-) Definitely worth holding him back 1 year ;-)
Last night he even had his 1st proper bath :-) We filled it up to his belly, just above his scar. For some time, he and Lela played and then they wanted to get out. I said to Rafa that he hadn't washed his hair! He sort of just looked at me and then I said "I'll hold you head and you lay down" - well - you should have seen the look of pure joy and delight on his face!!! He was floating and laying down and his head was underwater - and he LOVED it!!!!!!! We had to call Daddy to come and see and Rafa kept saying "this is so much fun!!"
Of course, after that, he didn't want to get out!!! Too, too cute!
How hard life has been for him these last 18 months??? How brave has he been??? How much has he put up with???
Have we turned a corner? I think so! The main tumour is gone :-) But we are not out of the woods. If you imagine your bone marrow flowing throughout your whole body and having cancer cells travelling along with it - that's where we are now :-((
Love to all, and thank you so much for your messages of support. It means a lot to us
19th January 2010
Rafael is slowly recovering, but not eating much at all :-(
Her had a fun weekend :-) Tia Paula and Uncle Jason visited with their daughter AND 6 dogs on Sunday :-)) Gabriela & Rafa were allowed to choose 2 of the dogs to come inside and the rest had to stay outside in the ute - too cute. Wish I'd seen that!! Gabriela told me they chose the 2 girl dogs :-)
Today Rafael was very slow. He just wanted to lay on the sofa, not eat anything. He kept needing to go to the toilet, but wasn't able to do anything :-(
I took his temp about 6pm and it was 38.2 :-( Given all that he's been through, the nurse said we needed to take him to the ER. Dom was on his way home in the train and I caught him in time and he met us at the hospital.
The doctor checked Rafael out and said that clinically he was fine and therefore we could take him home :-)) They didn't do any blood test, and we are a little worried about his kidney function, but we will get them done on Thursday anyway :-)
We went to buy the rest of his school uniform in the morning :-) Finally he has his tie and that's all that matters - he is SO happy :-)) and he got 2 pairs of shoes, 1 black and the other for PE. He hasn't taken the PE shoes off yet :-))
Can't wait to see him with everything on!! It's all too big, but that's normal for Prep isn't it???
Please continue to pray for Erik, he received more bad news :-( His MRI on 31st Dec showed nothing remarkable and yesterday an MRI showed Erik has several masses in his brain!! That's just 18 days since the last scan :-((((
15th January 2010
After 18 months and 4 days - Rafael's central line came out today :-))))) Woohoo!!!!
They gave him some medicine first that made him very smiley and giggly and spaced out. It kicked in very quickly and within 20 minutes they were ready to take it out. However, Dom wanted to be there and he was still on his way. He made it just in time :-))
The nurse had to put pressure on Rafael's jugular vein for 10 minutes to stop the bleeding, and that was it - all over :-)))
Rafael wanted to keep his "strings", but instead, we just showed them to him ;-)
We had to wait for about 1 hour for the effects of the drug to wear off. Rafael is very excited and keeps asking when he can go swimming :-) Probably in 1 week :-))))
We had a mini neuroblastoma reunion today! There were 4 families there, 3 in day oncology and 1 in patient!! I said that this "club" is getting too big! It was great to see Ruby and Jazz, catch up with Karen (Charlize was in her room, she is under going high dose chemo and will have her stem cell rescue next week) and meet Bart and his son Salvatore :-)))
13th January 2010
Rafael is still doing very well :-)))
My Uncle arrived from Adelaie and surprised us all on Tuesday. The children were so happy to see their great Uncle Graham :-))
We had an impromtu bbq party that night with our friends and it was a great night.
Rafael is trying to be too brave - says he doesn't need any medicine, but he walks hunched over, like an old man :-(( Poor little guy!!
Please pray for Erik, he is doing it really tough at the moment and it's just NOT fair!!!
Erik first fought high-risk neuroblasto
Our thoughts are with you Erik xxx
11th January 2010
Rafael is home!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
He woke up this morning and the 1st thing he asked was “can I go home today?”
Unfortunately, Prof Yves had to do a complex surgery and we couldn't leave until he saw Rafa :(
Well, that took until lunch time!
We were all ready to go, everything packed :)
There was some confusion at Monash about removing Rafael's central line. They wanted to give him a general anaesthetic to do it and did not want to give him a G.A. So soon after his operation.
I called RCH and Luke, a nurse coordinator got it all sorted out for us – yeah!! Instead, we will go to RCH – day oncology this Friday and they will do it there :-))) Woohoo
It was unbearably hot here today – 44.6C in fact!! Thankfully our air conditioner kept the house nice and cool and Rafael didn't get too hot :-)
Stacey was minding Gabriela, as well as her 3 daughters and another friend! I invited them all over here to escape the heat and watch a movie :-) Rafael enjoyed the company of the girls :-)
We gave him a nice cool shower and washed his hair, 1st time in nearly a week :-)
Of course, we HAD to have pizza for dinner as that's what Rafa has been asking for – plus it was way too hot to cook!!
Rafael is only taking Panadol and/or Nurofen for pain now. He is so brave :-)
We weighed him and as expected, he lost 1 kilo :-( Now weighs 14.6 kg
Rafael was just so happy to be home and the 1st thing he wanted to do was play with his Transformers :) and he has some new ones now, so he's even happier :-)
10th January 2010
Rafael continues to amaze us with his strength and personality :)
He has not had any morphine since last night :) So brave.
He slept very well and only had to wake up at 12 and 2am from medicine :)
The pain doctors came around and were very happy with Rafael and said that they were finished with him, unless more pain set in for some reason :)
Surgeon came again and almost wanted to send Rafa home!!! Except he thinks that Yves would be very annoyed with him if he did that!
Rafael's fluids were meant to be disconnected yesterday as per the surgeons orders - of course, today when I got there they were still running!!
He immediately ordered them taken out and that was it! Rafa wasn't connected to anything anymore :-)
According to him, if we stay at Monash to have Rafa's central line removed tomorrow, it will be a general anaesthetic and he'll have to stay 1 more night :(
We'll wait to see what Yves says in the morning, because if we wait and do it this week at RCH, it's just done in day oncology, no overnight stay :)
Rafael has been eating little buts all day. I bought him pancakes for breakfast and he ate a little. Same with his sausage rolls for lunch :)
Auntie Stacey, Goce and the girls all came to visit this morning and it was nice to see them all sitting on the bed playing leggo with Rafa :-)
We took Rafa down to the cafe in a wheelchair to eat lunch, but he wasn't very comfortable or enjoying himself, so Domingos ended up taking him back to the room :(
Mingo told me that later on they went back to have an ice cream, but Rafa didn't like his :-(
Tia Daniella and Tio Andrea paid a visit in the afternoon and Tia has promised to make pizza for Rafa next - oh wow! - her pizza's are the best!!!
So now we are waiting to see Yves tomorrow morning to find out if we will be discharged tomorrow or Tuesday!!! Can you believe that??? So soon! Much quicker than any of us expected :-)
The dressing across his tummy will stay until it falls off ~ 1 week. He can shower and bathe with it on even :-)
It all seems a bit surreal at the moment :-)
9th January 2010
Rafael had another good night sleep :-) :-)
The anaesthetist came at 10am to remove the epidural. Rafael was a little stressed by that, but it didn’t hurt, he just though it would :-(
Domingos asked him to remove Rafael’s catheter, but he said that would be up to the surgeons.
Soon after the oncologist came and he said that they will do the urine test for Neuroblastoma again while he’s here. Results take about 1 week.
At midday, Rafael started feeling a lot of pain ;-( That was longer than I expected considering he’d been off the epidural for 2 hours already!
Auntie Peta was visiting at the time and she has lent Rafael her iTouch – he’s very excited about that!! So is Lela – they are already fighting over it!
The surgeon came and he was VERY impressed with Rafa’s progress :-) He even hinted that we will be going home VERY soon!!!!! He also confirmed that the catheter could come out and maybe this afternoon they could take the drip off too :-)
The nurse gave Rafael morphine for the pain and it took more than 1 hour to kick in :-( Poor little guy, you could see on his face that he was shocked to be feeling that much pain :-( :-(
He will also have Panadol and Nurufen regularly. The morphine is on demand, every 2 – 3 hours.
Once the pain had subsided enough, the nurse was able to remove Rafael’s catheter :-) :-) Removing the tape was the worst part! Rafael was very relieved to have it out :-) :-) Who can blame him??
Poor little guy has diarrhea :-( :-( It is very hard for him to get out of bed and walk 1 metre to the toilet in a hurry!!! He is still connected to 1 drip via his central line, so the pole + pump have to go with him!!
We could definitely tell that he was getting back to his old self when the pump started beeping and he immediately pushed the call button for the nurse :-) :-)
Gabriela was in over drive today!! She must be better too :-) She was on the bed with Rafa, then off, playing DS, watching movies, eating, spilling things – arghhhh!!! Of course, Rafael loves it all :-) He always tells the doctors and nurses that come into the room that Lela is his big sister and she’s 7 !!! :-)
I decided to give Rafael a break at about 4:30 as he really wanted to have a sleep :-) So Gabriela and I drove home in stress free traffic – gotta love Saturday afternoons :-) Not too far from home, I started to fall asleep at the wheel!! Freakin’ hell!! I just could not keep my eyes open :-( Thankfully we were only a few minutes away :-)
Domingos said that Rafael didn’t end up having a nap, but he was ok, happy playing :-) Uncle Richard is visiting them and complaining about why Domingos hasn’t done any work while he’s been off on carer’s leave – hahaha - Richard – that’s just a poke at you :P :P
I forgot to ask Mingo if they took the other line out???
8th January 2010
After I left last night, Rafael needed a dose of morphine to help his pain, and then he was able to fall asleep and sleep most of the night J It meant that Mingo did too :-)
Yves did rounds very early this morning, just after . Once again, he was very happy with Rafael’s progress. He asked us to try to get Rafael out of bed today and taking a few steps.
Just as we were arriving, Mingo called asking where we were as Rafael was asking “what time is Mummy coming” :-) He was very happy to see Lela and Nanna :-) AND his all time favourite Captain Starlight – Captain Blondie, had already been in to visit him, and she gave him a sticker!!!!
I asked him if he wanted me to bring him anything – meaning chocolate milk or ice cream and he asked for pizza!!! Way too cute!
The rest of the doctors did their rounds. The oncologists were still happy with his blood results, neutrophils went down to 4, but that’s still great :-)
Pain doctors have decided to take him off the epidural tomorrow. Soon afterwards, Rafael will start feeling pain again :-( and they are going to use morphine to control it :-(
We talked to Rafael about walking and maybe going to the Starlight room. He liked the idea but was scared to walk there, so we said we could use a wheel chair. He was very set on that idea.
Before that, he needed to go to the toilet. He still has a catheter in his bladder. But when we got him off the bed and he stood up, he was too scared to move for fear of pain :-( Poor darling. He got so scared that he convinced himself that he didn’t need to go to the toilet at all and just wanted to lie down :-(
Then Captain Blondie passed by and told him the room was open. Well, you can’t imagine how much he perked up! He had a wash, put clean jocks and gown on, then walked, yes waked, to a wheelchair at his door!!!! Way to go Rafa :-) :-)
Then he said he did need to go to the toilet. I went with him while Mingo waited. Rafael sat on the toilet very well and didn’t complain of any pain, even though he seemed very uncomfortable L He is so brave – just 48 hours after his stomach and bowel were handled and sent into shock – he went to the toilet!!!! He was so happy, he wanted daddy inside the toilet too so that he could tell him :-) :-) Truly, he is so adorable, it just melts your heart :-)
We spent about 2 hours in the Starlight Room. They ended up playing a game on the Wii for ages, but Rafael got very tired.
I went back to the room with him and he just laid down and watched TV. quietly.
Not long after, we left and he was sad to see us go :-(
Mingo told me tonight that he fell asleep and had a good nap :-)
Today he ate about ½ tub of ice cream and 1 chip :-) :-) He also had a few sips of chocolate milk ;-)
7th January 2010
Not a good night for Rafa and Mingo :-( :-( :-(
Rafael woke up about from the anaesthetic. From then onwards, he only slept on and off all night. He kept calling out to Mingo to help him move to a more comfortable position.
The nurse got concerned because his blood pressure never picked up, it stayed around 80/30 most of the day/night.
She decided to call the doctor on call and he then called the anaesthetist on all. They decided to lower the epidural rate in the hope of bringing Rafael's B.P up.
It didn't, but what happened was that the pain medication wasn't enough and then Rafael was in a lot of pain :-( :-(
They decided to give him a morphine bolus and some Panadol. Yeah right, Panadol after major surgery???? Go figure!
When I arrived at , they had just given Rafael another dose of morphine.
At the same time, ALL of the doctors came to do their rounds. I mean seriously, how many people can you squeeze into 1 tiny room??? We had the surgery rounds, oncology rounds and pain control rounds all in at the same time!!!
Yves came 1st – gosh – he is SO hard to understand!!!! ;-)
He was very happy with everything and not too concerned about low blood pressure as it’s a side effect of surgery anyway.
The highest temp Rafa had was 37.7C, so they were happy with that too.
The oncologist had more blood taken for repeat blood tests. We were still mystified as to how Rafael’s white cell count could have dropped so much in a week?? Well, we may have a “theory”. Since Gabriela has been so sick, she might have passed the virus onto Rafa in that time. Even though he doesn’t show signs of having the virus, due to his immunosuppression, his white cells may have dropped. Sounds very feasible to me!!
The pain control specialists weren’t happy that Rafael was on morphine!! They also weren’t too concerned with Rafa’s blood pressure. They gave him a quick hit of more epidural and then increased the flow rate back up to where it was yesterday.
After that, the oncologist came back to say that Rafael’s blood tests today were very good. His red cell count had only dropped from 105 to 101, therefore -> he didn’t have much blood loss during surgery :-) :-) :-)
The biggest surprise was that today, his neutrophils were up to 8.0!! We were like “um, do you mean 0.8?” – nope, a whopping 8.0 all on their own! How can this be? He didn’t have any special medicines to boost his counts?
Well, the body truly is an amazing machine! Somehow, Rafael’s body knew it would need a lot more white cells than it had, to cope with the surgery, and his bone marrow went into over drive to produce more – and wow!, how it did :-) :-) This will help him to fight off infections.
Rafael slept on and off throughout the day. I saw 2 Captain Starlight’s in the hall and they were so excited to know that Rafael was there. I told them to visit when they could. Rafael was asleep, but they stayed and chatted with us anyway. As I was getting ready to take their photo with Rafael to show him, he woke up :-) and then he was his usually charming self, asking them ?’s and talking about Xmas. Well, not usual self, but the most words he’s spoken on 24 hours :-) :-) Thanks Captain Red, you know you are 1 of his favourites ;-)
Thursday’s are the day that Rafael has his central line flushed and the dressing changed. As it wasn’t being used by any of the machines, it had to be done. We once again questioned why Rafael had to have a peripheral line in his arm when he has 2 perfectly good lines in his chest!! Since yesterday, no one could give us a reason???
Anyway, after much discussion – they disconnected the one in his arm and he now has fluids running through 1 central line :-)
Mingo told me that Rafael woke up in the middle of last night and said “but Daddy, I haven’t brushed my teeth!” He’s SOOOOOOOOOOO cute!!!
Today he asked me “Mummy, when can I put my clothes on?” :-( We managed to get him a sponge bath, put some jocks on, pyjama pants on and a clean gown J He brushed his teeth and he was fresh and clean :-) During his wash, I saw him looking at the catheter and dressing over his wound, but he didn’t ask me any questions.
He started to drink little sips of water today :-) :-) :-)
The pain doctor came by to check on Rafael and he was ok. The Dr asked us to roll Rafael so that he could check the epidural in Rafael’s spine. It hurt Rafael a lot!! :-( :-( The Dr left and within about 5 minutes, Rafael’s pulse rate went racing up and he started crying and was in a LOT of pain :-( :-( It just breaks my heart to see him like that :-(
Thankfully the Dr was still in the corridor and Domingos was able to grab him. He gave Rafael a quick bolus of epidural and some Panadol too. It took about 10 minutes to work and then Rafael slept on and off again all afternoon.
When he woke up, Domingos was in the shower, I could see him looking all around the room! He turned to me and said “I just want my Daddy” :-( :-( Those 2 !!! Dom wants to try to come home tomorrow night for a decent sleep and I’ll stay there, but I can’t see Rafa letting that happen J Not yet anyway, maybe in a few days.
Once again, thank you so much for all of your messages and text’s of support, from far and near! Love to all xxx
6th January 2010
18 months tomorrow - that's how long it's been since D Day - Diagnosis :-( The initial plan was for 9 months of treatment and Rafael's surgery would have happened around the 4 month mark - oh well, they were a bit "off" with that one ;-)
One day I'll have to sit down and count up all of the procedures he has had. He has a cord for placing a special bead for each different procedure and we have only started it and never got beyond the first week! The longer I leave it the harder it'll be to thread them all!
I arrived at the hospital at 8:30am, just as a nurse was trying to wake up Rafael to drink Panadol - not a good move! He hide under the blanket and tried to sleep more. He managed about 1/2 hr, but we needed him to wake up anyway. He didn't want to take the medicine because he wasn't allowed to drink water after.
Once he was awake and up, he was very happy to play with my new phone. Then about 9:30, as they were getting him ready to go downstairs, it really him and he got very sad and was crying :-( He cried, we cried .....
We were both allowed to go into the anaesthesia room with him until he fell asleep. It started at exactly 10am as the doctors had told us!
4 hours is a long time to wait and wait and wait for news :-((
About 12:45 the anesthetist came out for a break and told us that all was going well.
Patrice arrived at 1pm to keep us company and that last hour did go very quickly.
At 2:15 pm Yves came out - whew!!! what a relief :-)
He told us that he believes he got 100% of the tumour!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! There will be some micro bits left, but further treatment should zap them.
He also had to remove Rafael's :-( adrenal gland. Initially that was the suspected site of Rafael's cancer starting. But after it had shrunk away, they suspected it was from the base of the nervous system. Yves said that he could clearly tell today that it did in fact start on the adrenal gland - so there you go!
Rafael is very heavily sedated with an epidural drip. They tried to wake him up for 2 hours in recovery, but they only managed to get an occasional head nod :-)
I left the hospital at 7:30 pm and Rafael was still sleeping very soundly - such a brave little guy!!!
We got another surprise today - Rafael neutraphils today were only 0.9, as opposed to 2.9 last week - how did that happen???? It also means that he is now neutropenic and has a much greater risk of getting an infection :-( Please pray to God this doesn't happen!!!
They cut along the original scar Rafael has from his biopsy (at diagnosis). It now extends right across his abdomen ~ 20 cm. There are only dissolving stitches and a dressing to stay on until after we get home.
I'm shattered now, woke up at 4:30 today, thinking .... thinking ..... Off to bed now :-)
Thanks for all of you messages today xxx
5th January 2010
Well, we have been admitted and all is set for tomorrow morning. It's our 1st stay at Monash and it's very different from the Children's!! We were lucky and managed to get a single room, but it's sooooo tiny, hardly any room for Mingo to put his bed up!! :-)) oh, and we have to PAY to watch t.v. - how funny :-)))
The anaethetist came in 1st and explained his thoughts for tomorrow. His plan is to have Rafael on an epidural for the next 3 days straight as opposed to morphine.
As Rafael's surgery has now been delayed to 10am, Rafael will still have to fast in the morning :-(
Prof. Yves then came and talked a lot with us. None of Rafael's histories or scans had been sent from RCH - oh well, not our problem!! Someone is madly rushing around to get that done ;-)
He believes that the surgery will take about 4 hours. We won't know until afterwards if Rafa has to go to ICU - it will depend on a lot of things.
Rafael will have an epidural in his spine, a catheter, a peripheral line for blood pressure, both of his central lines connected for fluids and a nasal gastric tube :-((((((((((((
Ah yeah, what can we do???? We will just sit and wait and wait and pray so hard that the epidural works and that Rafael is not in any pain afterwards.
We have been receiving many messages of support and well wishes from our dear friends, thank you all so much. Sorry if we can't respond to them all ;-))
Yves said that we probably won't be able to transfer back to RCH :-( He feels that by the time Rafael is disconnected from everything, it would only be 1 or 2 days before he would go home anyway. I told him that we WOULD discuss it again in a few days :-(
Love to you all
1st January 2010
Happy New Year to everyone :-)))
We went to watch the 9:15pm fireworks display but it was delayed and washed out due to a massive storm front that passed through Melbourne right at that time :-( The lightning show was pretty spectacular though ;-)
Next week is getting closer and closer by the minute. It is there, it is always in our heads, and already we are getting very anxious, but coping ok. I think I'll start freaking out on Tuesday.
We still haven't spoken to Prof Heloury, so not sure if we are going on Tuesday night or Wednesday morning!!
Gabriela has been sick since last Sunday. She's had mild fevers on and off and a racking cough that just won't go away :-((( She hasn't been eating much and has lost 1 kilo :-(( Poor Princess!!!
Next week will also mark 18 months of non stop battling this disease - grrrrrr!!! Poor Rafa :-(
We haven't explained to Rafael about his surgery yet, we'll do that on Tuesday. He's heard us talking about surgery and the hospital, but it doesn't mean much to him yet - thank God - let him be a normal 5 year old for a few more days - oblivious :-)))
We went to the hospital yesterday for Rafael's blood tests and all results were good. Urea was a little up, but that's probably due to Rafa not drinking enough during the heatwave days before :-( Platelets were 171 and neutrophils 2.9 :-))))
We ran into another NB family there who live in the next suburb and are moving around the corner from us :-) It's always nice to talk to other Mum's and Dad's about the struggles we all go through - they "get it" ;-))