Wednesday, 3 June 2009

Blog: June 2009

26th June 2009

Rafael had his hearing checked again yesterday. Good and bad news :-) His right ear has improved and his left has gotten worse! However, the hearing range in both ears that he can’t hear is the highest frequency (8000 something’s) and that sound is not used in speech. His right ear has improved in the high speech frequency (4000) from 80 decibels to 65 :-) :-) His hearing aid needs to be adjusted accordingly, but it broke and has been sent away for repairs.

Domingos went to Sydney on Wednesday and Rafael drove me “crazy” all day asking if we could go to see the new Transformers movie. When Gabriela arrived from school, we finished up her homework and the 3 of us headed off to the cinema. Thankfully they are a bit too young to understand some of the stuff that happened in the movie, as the rating was PG 13, they just wanted to see the Transformers transform!! Rafael was engrossed, just 2 toilet breaks! I think Gabriela would have been happy to leave half way through :-)

School finished today and already Rafael is yelling at Gabriela and telling her to play his way, where he wants and when!! It’s going to be a long 2 weeks :-)

I just received my next roster and I managed to get the days off to attend a Neuroblastoma conference in Chicago in July. Gabriela’s passport is ready, so she will come too :-) :-)

22nd June 2009

Darling Liviane, this time last year, Mummy and Daddy were so stressed and worried about Rafael, that we only briefly mentioned your birthday … I am sorry xxx

Today is your 8th birthday and we miss you so much. We all love and miss you very much xxx

Gabriela is saying a special prayer for you tonight.

Do you know, that quite often people say to me what lovely names Gabriela and Rafael have? That's all for you, they are the angels on earth watching over you in heaven xxx

19th June 2009

Well, today was supposed to be a “simple” but long day at the hospital …

Rafael and I had to leave home early to stop at the car dealer to have some minor repairs done and then we headed into the hospital.

Rafael was perfect during his blood test, he took his own blood down to pathology. Then we went back upstairs to ENT to see his Ear Dr, but our friend Renee told us they were behind and we should do our other stuff first.

We went around to Day Oncology and Rafael was so excited to see Lisa, it's been a while! His dressing change and line flush with Tia Carla went perfectly.

However … as we were leaving to go to our appointment with Dr Peter and try to catch the ENT Dr , we walked past the in-patient playroom and it was open. All Rafael wanted to do then was play there. I managed to keep walking and get him across to oncology outpatients … and that's when he lost it!!! :-(

The nurse wanted to weigh and measure him – NO chance!! Rafael was screaming and trying to run away and I was trying to hold him! From what we “guess” he is still not 15 kilos yet – seems to be 14.85kg and maybe 100 cms??? :-))

Then …. Rafael didn't want to leave that room! But I had to get him to sit further down the corridor as I was waiting for either Dr Peter or the ENT to call us!! In hindsight, I should have just left him there – oh, that's right, I did!! And he was screaming for me to go back there!!

I dragged him up to where I was sitting and had to endure utter humiliation in front of the other parents – trying to hold Rafael so he didn't run away and being scratched and having my hair all pulled at the same time :-(

By the time Peter called us, Rafael had still not calmed down and he would not let Peter examine him at all. I even saw Rafael trying to scratch Peter's face and managed to grab his hands in time.

So, for news of Rafael's treatments – I have NO idea. I could not even hear anything Peter was saying over Rafael's carry-on!! His blood counts are improving :-)

After all that, Peter and I just gave up trying to have a meeting and he called the social worker to come and help us calm down. Just before that, Rafael managed to punch me really hard in the mouth – yes, I have a fat lip :-(

I needed to go to the pharmacy to get more medicine, Rafael has to start taking Magnesium – AGAIN!!! :-(( All Rafael wanted to do was go back to the weighing room and I left him there and he FINALLY calmed down – 45 minutes after he started!! ARRGHHH!!

After all that, we waited with Renee for the ENT Dr for 1 more hour and I just gave up! I mean, really, 3 hours wait for an appointment?????

By the time Domingos came home at 7pm, I was still “in shock”. Rafael's behaviour today really knocked me, and just because he couldn't get his own way. I was a mess :-((

16th June 2009

Ah, it has arrived …. 1 year today :-(

1 year and 1 day ago, the biggest concern in our lives was deciding whether to send Rafael to school this year or not???

1 year ago, that decision was made for us; it was taken out of our hands.

I think that Rafael would have coped ok at school, but he will also benefit a lot from being 1 year older when he starts :-)

It has been a long road already and very difficult at times. I saw some photos of Rafael yesterday that Gabriela had taken on her camera. I was shocked to see him looking so sick :-( Since I’m with him everyday, I don’t notice the changes as they are gradual. But he looks SO good now :-) :-) If he meets new people, I don’t think they can even tell …

The journey is not over and we don’t know where we are heading next? Rafael has 1 more round of MIBG on 2nd July and then he can have all of his scans and tests performed to get a better idea of how effective the treatment has been.

Love and kisses to you all, thank you for sharing our journey xxx

15th June 2009

We all had a fabulous weekend :-) :-)

We had to wake the children up at 7 am to get ready to head off to Camp. Gabriela was so cute, she jumped out of bed and started playing the piano!! Wish she would do that every day!

We arrived a little early and they both met their buddies, Rafael with Daniel and Gabriela with Kristen. Rafael wanted to get on the bus straight away, he couldn’t wait. They were given very warm winter jackets by Challenge.

The buses pulled out on time at 9 am and I was sure I wasn’t going to cry – until I did :-( My 2 little babies heading off to camp together - wah!!

We had our own weekend away to keep us busy :-) We were able to check in early and took the time for a long walk up and down Chapel St. It’s an area of Melbourne we never go to and we really enjoyed it. We even found our favourite pub, Bridie O’Reiley’s and stopped for a couple of pints.

In the afternoon I had a lovely 1 hour full body massage – pure heaven and then we both enjoyed a 20 minute steam. The hotel was very lovely and we had a thoroughly relaxing time :-)

After breakfast on Sunday, we drove down to Mt Eliza to meet the children for lunch and then bring them home. We were early, so continued on to Mornington for a walk and coffee.

After we parked the car, Rafael saw us and came running “Mummy”, “Daddy” and gave us big cuddles :-) Gabriela was, well, Gabriela :-) They both had their faces painted as jaguars :-) We did manage to get a “hello” out of her. They both wanted to show us their rooms and there was a jumping castle inside that they wanted to keep playing on.

We ended up being the last to leave as our friend Julia drove down to visit us as her children were a bit sick and we couldn’t go there. How sweet :-) :-) xxx

All of us were pretty exhausted after the big weekend and it was early to bed for all of us :-)

I will post the photos and videos soon!
9th June 2009

Mummy loves the swirl at the back

9th June 2009

I had to take Rafael to our GP on Thursday to check on his feet again. It turns out that he has 2 warts, 1 on each foot. So Dr Cong froze them with dry ice, Rafael was very brave :-) They are quite thick and he’ll need to have a few more freezes :-(

I was talking to Dr Cong about the swine flu and flu and stuff in our area. He suggested not sending Rafael to kindy for the rest of this term! ...... Geez, he's just gotten well enough to attend!!

We are trying to find out from R.C.H if he is able to have a flu vaccine and/or Tamiflu if needed.
Both Gabriela and I are having our first flu vaccines next week as a precaution against us passing on anything to Rafa :-(

Rafael’s blood counts from Friday came back better than expected :-) :-) Red cells are a little low, platelets ok, and neutrophils were 1.3!!! :-) :-)

Our long weekend was good; Gabriela and Rafael spent most of the time yelling at each other!! My head hurts :-(

Dom took them for a bike ride on Sunday afternoon in the freezing cold …. Brrrrrr! Why can’t bike riding be something that is only done in summer???

We went to Patrice and Stuart’s on Saturday night to christen their new Brazilian BBQ :-) :-)

I stayed in bed most of Sunday trying to keep warm! Plus it was a good excuse to finish reading My Sister's Keeper. I thought I would cry a lot, but I didn't :-) I think I was too gob-smacked by the unexpected twist at the end - OMG!!!

We all enjoyed lunch at the Waterstone Café yesterday :-)

Gabriela and Rafael are going to Junior Camp with Challenge next weekend. Almost a year since Gabriela went to her first camp … can you all remember how upset she was to see us? After we drove ALL the way down to Mt Eliza?!!! This year they are asking the parents to pick the children up from there and we have already warned Gabriela that we are coming J J Hehe …. She will be fine, but I’m not sure about Rafael? He will be happy if he is close to Lela and they will be doing lots of fun things :-) :-)

Domingos and I are VERY spoilt! Ling and Paulo who work in Dom’s Sydney office have bought us a night away at a luxury hotel in Melbourne!!! Can you believe that? 1 hour massage for me XXX :-) :-) :-) , champagne, breakfast ….. can’t wait. You guys are amazing friend’s xxx
3rd June 2009

I have hesitated in starting this month’s blog … nearly 1 year of fighting this awful disease …

I think back to 7th July 2008 when the Dr told us the whole initial treatment would take about 9 months … yet, we are still not close to that stage ….

Anyway, Rafael is really well. It looks like his blood counts are dropping as he has been very pale the last couple of days and today I noticed some nice bruises on his legs :-( He is having a blood test on Friday, so we’ll know more then.

He had his “formal” school interview yesterday – too cute! I had to leave the room, but I could hear him counting and sorting colours And drawing and cutting :-) I cannot imagine him in a school uniform – he’s too little :-) :-)

My trip away was a bit too long for my liking :-( I did manage to do some fantastic shopping :-) We were diverted to Sydney on the way home due to fog, that meant 19.45 hours inside the plane for me!!!! Arrgghhhh!! We had Australia’s richest man onboard and he organised his personal jet to pick him up in Sydney – nice to have money hey?


  1. Always thinking of you all. Take care.

  2. Dear Rafael,
    I haven't yet met you and I have only just discovered the news of your illness. I work with your Mummy and am heartbroken to hear of this news. I am so sorry. There are no words to help you, but please know that I care so much, and that you and your family will be in my thoughts and prayers every day. Give Mummy a big hug from me. :-)
    Amanda Liew.

  3. Rafael,
    Your hair is great! Your mummy is right: the swirl at the back is veru cute! :)
    Hugs and kisses from your friends from Rio de Janeiro,
    Viviane, João e Lívia
    PS: By yhe way, if you want some hot weather, don´t hesitate to come visit us!!! hahaha

  4. Hi everybody.
    Nice hair Rafa.
    kisses from sunny Rio.
    Love you,
    Sergio Manhães

  5. Beautiful words for Liviane. Keep strong, Rafa. Gabi is the best sister ever. Mom Tasha and Dad Dom love you kids, more than anything. Take care you all. Love always, Ken and Val.