Wednesday 27 August 2008

Blog: August 2008


29th August 2008


Rafael has bounced back fro his latest round of chemo very well :-) Besides the fact he has no hair, you wouldn’t even guess he is sick!

Gabriela was home form school for 2 days this week with a virus and now she has been kind enough to share it with me L I woke up this morning and could hardly move :-(

I am off to LA in the morning and the logistics of having someone “cover” looking after Gabriela in case Domingos has to go to the hospital have been arranged, thanks Helen and Richard xxx

Rafael is having another echocardiogram on Monday as well as a kidney function test to make sure the levels of the different chemo drugs are not affecting him too much.

They gave him a “quick” blood transfusion on Wednesday before he left hospital as a “top up” !!! It’s weird how we are getting used to these things so quickly!!!
 

26th August 2008


Rafael went to the hospital begrudgingly with Domingos yesterday morning. The results were back – bone marrow clear of neuroblastoma but the trephine (bone) still has it. Therefore, it’s a “no go” for bone marrow rescue and he went straight into his 3rd round of chemo.

I had to go to work at night, so it was just Dom and Rafa. Dom said Rafael was in excellent spirits all day, walking around, playing, eating 2 x cheeseburgers, very happy.

I went on my trip as planned and Annette stayed here to look after Gabriela (who is sick again). When we got to the plane ~ 21:45, we were told that it wouldn’t be departing before 02:30!!! In the end, at 03:00, they sent us home. I was wide awake by then as I had drank so much coffee to stay up all night … grr!

I didn’t send Gabriela to school as she has a virus and a terrible cough. We went in to visit the boys and took them a pizza too. Rafael was really happy. He had spent the morning in the play room and had brought a huge box of construction toys back to his room. His blood counts aren’t great, so he will have blood transfusions tonight to get him ready to come home tomorrow :-)

They have scheduled another bone marrow aspiration for 2 weeks time. Next Monday he will have his kidneys and heart checked for side effects of the chemo.

23rd August 2008

As expected, it was a WONDERFUL 1st day at the snow for Domingos, Gabriela and Rafael. We went to Lake Mountain which is not too far from Melbourne. As we entered the park we started to see bits of ice along the road and already they were excited! It was quite amazing how quickly the snow increased as we drove up.
We hired toboggans and at first Rafael only wanted to go down with Daddy and Gabriela with me. Of course, by the end of the day, they were going alone – too cute.

They were desperate to build a snowman, which was their whole dream of going to the snow. However, we didn’t realise that we should have taken a shovel! Please see our picture of the “pitiful” snowman we managed to build :-) :-)

No one complained too much about the cold, just the lack of food (I thought I had made enough sandwiches!)
Also, it snowed a lot while we there! Yeah :-)

We all had a great day and it was lovely to be able to spend it with our friends too :-) Thank you Xande, Maura e Nick, Gilson, Cleide e familia xxx

22nd August 2008

Thursday was a pretty bad day :-(

Normally Rafael wakes up happy, but of course, on Thursday, because we had to be at the hospital by 8 am, he woke up really grumpy and wouldn’t even allow me to change his pyjamas!! By the time we got going in the car he had calmed down and was more concerned as to why we were leaving when he hadn’t had his breakfast yet!
His bone marrow aspiration went well, the Dr came out at 9:50am to say all was fine and he would be waking up in recovery soon. Not long after that they called me in. Rafael was slowly waking up, but trying to hit the sides of the cot and not letting the nurse touch him. He started kicking and throwing things off the bed.

Next thing, the nurse says we can go home. OK, easier said than done. I tried to get Rafa into the pram with all the bags etc and he was fighting and kicking and no one was helping me. He even threw his head down on the recovery floor, still kicking and screaming. I managed to clip him in, but he is so strong and was pulling and fighting to get out. We almost managed to get to the lift when I saw blood all over his bandages. I turned to a nurse and said “we can’t leave, he’s bleeding!” She tried to take him from me but he was fighting so strongly, no one could hold him. He turned to me and bit me SO hard on my shoulder, I just had to “leave” I told him that he had gone too far and he could not treat me like that and that I was going home. I took the pram and the bags and went to sit near the lifts. I could still here him screaming.

I took a peak and they had taken him back to recovery where 4 people were trying to calm him down so they could look at his bleeding. Then I saw the anaesthetist coming back and taking him back to the surgical room. Apparently they gave him 2 different medicines to knock him out.

Finally they were able to concentrate on the bleeding. They had changed the dressing, but already it was full of blood. They decided to send him up to Day Oncology for observations and for the Dr to see him. By this time, Domingos had arrived from work as I had called him when Rafael was in recovery. I just don’t know how to deal/cope with Rafael when he throws those tantrums??

They took Rafael in to the treatment room to check the bleeding and change the dressing. He was sitting on Dom’s lap, back towards me and when they took the dressing off, blood was gushing out from his right side. By this time Rafael had calmed down a lot and was fine (still a bit drugged). To cut a long story short, it took 4 hours to stop the bleeding!! Can you believe that? What should have been a quick, straight forward procedure turned into a nightmare :-( :-( At one stage the Dr was even applying pressure herself for at least ½ hour solid.
His platelet count was ok, but they ended up giving him a transfusion because his blood just wasn’t clotting. They checked his coagulation, but it didn’t show much. Seems to be no obvious reason as to why he bled so much.

Finally got home at 6 pm!! Dom had picked Gabriela up from school and by the time he got her home, she had a fever of 39.1 :-(

Friday was much better J Dom worked from home and that kept Rafael happy and enabled me to take Gabriela to the Dr. She spent most of the afternoon in bed and slept a bit. Apparently lots of the children at her school are sick with a virus and she probably has it, or she could have an ear infection. I even managed to take Rafael to his friend’s house to play for a couple of hours :-)

We have been planning to go to the snow this weekend and hope Gabriela is well enough. We have to go now as I will be working the next 5 weekends and then the snow will probably be gone??

20th August 2008

Hello all, we have had a good couple of days at home. Rafael is doing well. He didn’t have a platelet transfusion on Tuesday as expected, but I’m sure he needs it as his legs are covered in bruises! He has to be at the hospital at 8 am tomorrow for his bone marrow and trephine aspirations. That is a good time considering he has to fast from midnight.

Rafael had fun today as he was able to go to Nanna’s and watch Nick Jr. all afternoon :-) In fact, he threw a tantrum when it was time to leave and ran away to hide. It took Mum and I close to 10 minutes to find him hiding underneath a bed!!!

He is eating well and we have found a way to disguise his magnesium medicine in yoghurt so that he doesn’t know ;-)

18th August 2008

Rafael came home form hospital yesterday afternoon. It is the “brightest” we have seen him yet in hospital. He was so happy and having fun, he even taught himself how to go for a ride on the stand that holds all of the pumps and drips :-)

He was in fine form on Saturday night and Sunday morning!!! Such tantrums he is throwing! 

On Saturday morning he vomited and the tube came out of his nose. We have convinced the Dr’s to leave it out for now and see if we can convince him to take his medicines orally – easier said than done!!! We are trying to think of inventive ways of disguising it!

On Sunday morning a cap came off his Hickman’s line. I heard it “pop” and within seconds there was blood everywhere. I didn’t know whether to push the emergency button, the nurse button, or run into the corridor!! I chose the later and luckily our nurse was right there. It was such a mess, but no huge drama.

We have had a day at home today and even managed to attend Gabriela’s book parade (dress up) at her school – he loved that :-)

We are going back to hospital tomorrow as his platelets are low and he will need another transfusion.

This is the last week of my “holidays” – Monday (home), Tuesday (hospital), Wednesday (home), Thursday (hospital), Friday (hospital) – where did those 4 weeks go?? I am so tired and feel like I am sinking into a huge black hole at times. It just doesn’t stop. It is what we expected, but still, nothing can prepare you for this “merry-go-round” ride :-(

Thank you Helen for your help on Saturday and Emilia, it was so lovely to see you and the children :-)

15th August 2008

After spending all night and most of Thursday in a tiny cubicle in emergency, they finally found an isolation room for Rafa in the afternoon. They also gave him a blood transfusion and took some swabs from his nose as well as from the entrance to his Hickman’s line (it looked a bit red)

When Domingos left (after being up nearly all night) Rafael threw one of his great tantrums again!!

We had lots of visitors too; it was a nice surprise :-) Thanks Julia and Georgia, Helen and Ben, Renee e Luiz xxx
During the night his temperature came down and by morning, he was back to his normal self.

The Dr saw Domingos last night and said Rafael will be in until at least Monday morning :-( Dom managed to convince them to reassess him on Sunday at least. It is so frustrating there as nothing happens over the weekend and no one seems to want to make decisions. She did say that Rafael has to be afebrile for at least 48 hours before he can go home (that could be Saturday night).

Anyway, we are taking it in turns to “sleep” there again, not getting to see much of the Olympics as Rafael wants the TV on the kids channel ….

14th August 2008

Rafa is in hospital again. Last night his temperature went up to 39, so that means infection :-( It was expected though. They gave him IV antibiotics and a platelet transfusion last night. They are still in emergency as there are no beds available in oncology. I’m heading in soon. Will update later xxx

13th August 2008

Time flies when you are having fun :-) :-)

Gabriela didn’t go to school on Monday. She and Rafa played well all day. She is very good medicine for him!
Rafael is not eating at all now L He might have a few bites for dinner, but nothing during the day. I think his feeds at night will be upped.

Had to take him in today to have his blood checked. This morning he couldn’t get out of bed, was tired, cold and by 11 am, asleep again on the sofa. He was meant to have his 1st physio appointment, but it was cancelled. He slept all the way in the car, but turned back into “charming” Rafa when it was time for the finger prick blood test. Gosh, it was so hard to hold him down!

His bloods are borderline and will be checked again on Friday, and it seems certain that he will have blood transfusions then. His neutrophils are 0 and his haemoglobin was 87. They usually do transfusions when it drops below 80.

xxx

10th August 2008

Missed a few days…. Was nice to have another weekend at home. Before Rafa got sick, I had bought Gabriela tickets to see Cinderella on Ice and it was on Friday night. Our friend Patricia volunteered to watch Rafael for an hour until Domingos arrived from work. I told him that he was going to Tia’s house and he would be the first of our family to go there. Well, for the whole afternoon he kept asking if we could go now? So much for parental concerns of him missing us!!

Gabriela, Mum and I thoroughly enjoyed the ballet :-)

Gabriela had to be up at 7am on Saturday to go to camp. As the bus pulled away, I burst into tears :-( I had mixed emotions - my little girl is growing up, the reason she is going is because Rafael is sick and the amazing generosity of the volunteer’s xxx

Rafael decided he wanted pizza all day!! Thankfully Lina was able to whip one up at the café for his lunch. Then Domingos dug out an old recipe from his sister and he and Rafa made their own pizza for dinner. The problem with Rafa being on a high-fat diet is that we are eating too much of it :-(

Sunday was a disappointment. Won’t go into too much, but Domingos, Rafa and I drove 1 ½ to Mt Eliza to meet Gabriela for a bbq lunch and some “fun”. But when we got there she was very angry to see us, wouldn’t talk to any of us and Rafa didn’t want to do anything, so we turned around and drove home again L At least Rafa was happy to be able to watch his DVD in the car :-)

They are both excited to watch the Olympic Games and already know how to chant “Oi, Oi, Oi, Aussie, Aussie, Aussie, Oi, Oi, Oi”

xxx

7th August 2008

A fun day today. We went to ABC Kids to pick up Nicholas (Rafa’s best friend) and whilst there, got to catch up with the rest of Rafa’s friends and his ex-teacher Bee. Most of the children were curious about the tube in Rafa’s nose, but not about his hair. One of the boys even came and gave Rafael his Thomas beanie that had been left there all that time :-)

Nick and Rafael played and played together all afternoon having lots of fun :-)

xxx
6th August 2008

Rafael is home again, a quick 3 day visit J This round of chemo didn’t affect Rafael as badly as last time. In fact, he only vomited a couple of times.

He did manage to throw a fantastic tantrum (when Dom left for work)!! He ended up pulling all of the sheets off the bed and throwing them on the floor, and the remote, and the bed controller etc …. Too cute ;-)
He needed to have a blood transfusion before coming home, but that only took 4 hours this time.

Actually, the timing of going home worked out perfectly as Mum was discharged at the same time and I was able to pick her up too.

Rafa’s weight is very good, 13.3 when we left ---- yeah!! I did get in trouble though for buying the wrong cheeseburger?? I couldn’t understand what it was Rafa didn’t like about it, as they seem to have the same plastic taste each time. He didn’t want the mustard or pickle or onion or the brown stuff. What brown stuff? Turns out he meant the burger. Next time I go to Maccas I have to ask for a cheeseburger without burger! Can you imagine that??

Rafael is already booked in for his bone marrow aspiration and trephine on 21st August and his next round of chemo on the 25th. If the bone marrow is already clear of cancer, it will be frozen and stored away. If not, I guess he will have to have the tests done again :-(

Gabriela is going to camp this weekend. It is an overnight stay in Mt Eliza where she gets to play, play, play and have too much fun. The generosity of people and organisations is amazing. Challenge (http://www.challenge.org.au/generic.asp?pageid=2) receives no funding and all the $ is raised through donations. When Rafael is feeling better, he will be able to go to camp too. Can’t wait to see the pics. We will drive down on Sunday and meet her for a bbq lunch. The forecast is wet and freezing :-(

xxx

4th August 2008

Rafael is back in hospital and doing well. We drove Gabriela to school on the way to the hospital and he cried when it was time to leave as he wanted to keep playing with Gabriela :-(

He was pretty good at the hospital. Domingos stayed today and worked from there. I took the time out to finally visit my Mum. Looks like she will be going home on Tuesday, with lot's of help from a social worker and the council. Lots of physio and rehab for her :-(

Rafael was happy, watching tv, eating cheeseburger (maybe we should buy shares in McDonald's??). Domingos told me to bring in fresh movies as he has already watched all of the ones he took.

Apparently this round will make Rafael sick again, but just for ~24 hours. Hopefully it won't be like last time. They weighed him but Dom forgot what it was! Due to come home on Wednesday, but we'll see how that goes.

xxx

3rd August 2008

Rafael finally got to see "Kung Fu Panda" today :-) We went to the 11am session and as expected, it was empty. What was unexpected was his reaction! When it started, he placed his hands over his ears and closed his eyes. He was not enjoying it at all :-( We were in the last row, so I took him behind the wall and we watched it a little bit from around the corner. Then I managed to get him to sit on my lap while I sat on the floor at the very back of the cinema. About 1/2 way through, I convinced him to move back to the last row and we were able to finish watching the movie al together :-)

Rafael is getting much better and taking medicines through his line now. As long as we tell him and let him "help" push the syringe :-)))

xxx

2nd August 2008

Another fun day at home :-) After a slow start in the morning, Rafael and Gabriela helped me to cut most of Domingos' hair off. We started with a No. 2 and went down to 0. Then it was Rafa's turn - too cute, wait 'till you see the pics.

We went for lunch at our favourite cafe - Rafa wanted pizza (of course)

In the afternoon, Rafael finally got to catch up with his best friend Nicholas. They have been desperate to get together for a play.

My Mum's surgery went well. Don't have many details but it seems they were able to pin it and that was the preferred option in terms of recovery and future mobility,

xxx

1st August 2008

Rafael had his appointment with his consulting Dr today. All is good and set to go for his next round of chemo on Monday (4th). A quick visit to the hospital - it only took 3 hours!!!

Good news, he has put on more than 1 kilo!! Now weighs 12.8kg. Dietician is aiming for 13 - nearly there. The pizza we had for dinner will help!!

Afterwards, we caught a tram into the city and went to Daddy's office to draw and play with everything on his desk. Daddy's colleagues came to say "hi". Auntie Peta wasn't there :-(

We had to go back to the hospital car park to get the car and Rafa cried most of the way because "I didn't get to eat lunch with Daddy"! I think the passengers thought he must have been in pain. The nice thing was that most people were helpful and sympathetic and helped us on and off the tram with the stroller :-)

Mum has already gone into hospital awaiting her surgery tomorrow.

Thank you so much to Simone and Rosana for all of their help with getting Mum to the hospital xxx

Video: Gabriela towing Rafael 23/08/08


Gabriela towing Rafael





Video: Lake Mountain 23/08/08

Hold on Rafa, Daddy's steering!







Video: 23/08/08 - Snow Man

Our very poor attempt at a snow man :-))


Sunday 24 August 2008