Rafael Moraes: November 2008

30^th November 2008

We had another long (and much delayed) meeting with Dr Peter Downie on Friday.

The consensus from the Combined Therapies meeting on Wednesday was that surgery will not be beneficial for Rafael, radiation is not a preferred option either and therefore, Rafael will have MIBG therapy using liquid radiation to target the neuroblastoma cells. This will be next year, after his stem cell transplant.

He will have more tests and scans this week – GFR (kidney function), bone scan and MIBG scan. All of these are done in nuclear medicine and are painless. The worst will be Rafael having a cannula inserted on Monday morning for the GFR :-(((

As we promised Gabriela and Rafael, we put up the Christmas tree on Saturday :-))) It took us forever to untangle the lights! We bought new tinsel this year - red (Rafa’s favourite colour) and silver. The tree looks lovely. Of course, all Rafael wanted to do was have the Christmas train set up – NOW!

Today ASIC social club held their Christmas party at the zoo. Both Gabriela and Rafael wrote a list for Santa and were very excited to see him J They were excited to run around the zoo and have a look at as many animals as possible. However, the Melbourne Zoo is so big, they only saw about ½ of it! Rafael was very pleased to receive a Diego adventure toy from Santa. Gabriela was also very happy with some Beados.

Rafael has stopped taking salt now and has been fantastic by taking his magnesium and Bactrim by himself. We are close to taking his nasal tube out. For the next 3 days, he has to take drops of iodine to protect him when he has the MIGB scan. We tried to give it to him orally, but it just tastes so awful, that he couldn’t swallow it. Poor little guy, he got so upset when he saw the colour of his tongue. He thought it was blood :-((

26^th November 2008

Another good week :-))

We did not go to Ballarat on Saturday as planned as the weather was atrocious!! About 5C up there and raining – no thanks, better to stay in our nice warm house J Thankfully, Sunday was nice and sunny. We enjoyed the drive up there. We only saw Gabriela briefly, as she was in “don’t know you guys” mode L We did get to ride in a special police highway pursuit car and Rafa was allowed to sit in the front on Daddy’s lap and put the sirens on :-)) We saw a little of Sovereign Hill, but did not stay to go inside the mine.

By Monday, Rafael was really missing Gabriela. We drove into the city to pick her up. Of course, she was very tired and grumpy :-(

Tuesday was perfect for Rafael – he was back at kindy with Nicky :-)) Rachel – the teacher, told me that all of the children were very protective of Rafa and looked after him, especially Nick and Alice :-) She was also very impressed with Rafa’s intelligence! She said that he knew all of the songs and remembered the days of the week and what order they go in, even if she mixed them up, She said he is the “brightest” in the class :-)))) 1 very proud Mummy xxx

Had to be up extra early today to get across town for his hearing aid fittings. The traffic was its usual nightmare self – argghhh!! I hate driving :-(

Rafael accepted the hearing aids surprisingly well. There were no complaints, no trying to take them out, nothing – my upper little guy :-) Can’t really tell yet if he is hearing better with them. He still made me turn up the Hannah Montana c.d. on the way home in the car!

I had changed his order to the bright blue ones that he wanted, but the message was relayed wrongly and for now, he has bright blue ear inserts instead! His choice though, as the clear ones are here too, but he wanted the blue :-))))

The nurse came to change his dressing and take some blood. He was pretty good, just hates it when they use the cleaning swabs around the exit site L Seems to be the alcohol stings. Poor little guy :-((

21^st November 2008

Rafael has had a great week :-)

On Monday he played at Nanna’s all day and they went to the playground.

On Tuesday we even managed to go to Gabriela’s school to pick her up as well as Jack & Alex who live close by. Their Mum and Nanna have been helping us out so much this year – thanks Debbie and Lyn xxx

The nurse came to our house on Wednesday to change the dressing on his central line and take some blood. He was ok – ish! You’d think he would be used to it by now??? It really just the cold water they use to clean that he dislikes L The hospital called later in the day to let us know that his haemoglobin was low and to come in the next day for a transfusion.

We had our meeting with the surgeon, Mr Russell Taylor anyway, so it wasn’t like an “extra” trip to the hospital – just a very long day!

Russell confirmed what Dr Peter Downie alluded to last week – Rafael’s tumour cannot be completely removed and therefore – Is it beneficial for Rafael to put him through a very risky surgery, knowing that some tumour would be left behind anyway??? With Neuroblastoma, they really need to be able to remove 100% of the tumour, as even 1 cell left can grow again.

He was very thorough and had even consulted a second radiologist to review Rafael’s scans. It seems that the initial thought was that his tumour had started on his left adrenal gland. But now they can see that it has shrunk away from that area and is still massed around his sympathetic nervous system, close to his spine and still wrapped around the aorta and vena carva. He did mention that there is only1 Dr in the world who attempts this surgery (in England) and even he believes that the outcome is no different.

Next week Rafael’s case will be presented at a “Combined Therapies Clinic”. Given that 2 very senior doctors have told us that surgery isn’t an option, they will probably discuss radiation and other alternatives.

For the first time in his life that Rafael has reached 14 kilos!!!!!!!!!!!!!!!!!!!! Yeah :-)) The overnight feeds are helping, as he still doesn’t eat much. He has his chubby cheeks back (bochechudo)

Friday was a great day too. After his blood top up on Thursday, he was like the “energiser bunny”!!! He went to kindy and spent the whole day there playing with his friends, most importantly, with Nicky. As I was leaving, they were lining up to go outside and play; Rafa and Nick were standing together holding hands – too cute :-)

Gabriela has gone to Ballarat for the weekend to attend the Cops & Kids camp. It is full on 4 days of fun and activities. Not sure how she’ll go? They are even going helicopter riding!!!

17^th November 2008

We finally had our meeting with Rafael’s new consultant Dr on Friday. It was very delayed (had to wait more than 1 ½ hours!) The meeting went well as we had already emailed Dr Downie all of the questions and concerns we wished to discuss, so he was prepared too.

Rafael’s report from his CT scan on Wednesday was back. Peter started by going through his initial scan from 3^rd July. He asked if we’d seen it before – nope! He spent a lot of time going through each section, where the main tumour starts, how it pushed his inferior vena cava away from his aorta and spread throughout the abdominal space, measuring 8cm X 4cm.

The new scan showed that the tumour has shrunk a lot, there was no measurement this time. There are lots of areas with calcification (hardening). It is still between his vena cava and aorta. We are meeting the surgeon next week to discuss options. Dr Peter believes that it may not be possible to remove with surgery alone, as it is very deep and complex.

Therefore, he is referring Rafael to a “super clinic” at the hospital. This means his whole history, scans, treatment etc will be discussed by a team of Dr’s from the hospital (oncologists, pathologists, radiologists, surgeons). From there, they will decide a new treatment plan for Rafael. Dr Peter has already confirmed that Rafael will not have any more doses of Cisplatin due to the damage it caused to his kidneys.

The plan now is for him to have his next round of chemotherapy on 1^st Dec, using Carboplatin instead and then await surgery or radiation.

That means we have 2 weeks at home, being relatively well (may need another blood transfusion) and only having to go to the hospital once each week :-)))

We had a fun weekend. Domingos and I managed to go out for dinner on Friday night with the other parents from Gabriela’s class and her teacher. We had a lovely dinner at Helen and Richard’s (thanks guys) on Saturday night and on Sunday we went to Rafael’s favourite “baby Jesus church” for Clara’s communion. Whenever we drive past that church, he sees the cross on top and says “Look, baby Jesus!” He really enjoyed it and said his favourite part was the singing.

Gabriela is going to the "Cops and Kids" camp with Challenge next weekend in Ballarat. We are thinking of going there for the weekend too.

12^th November 2008

We had to be at the hospital by 9 am for Rafael to drink some special fluid before his CT scan and he was not allowed to eat or drink after 7:30 am. The traffic on the freeway has been a nightmare lately and we had to leave home by 7:30 to get there on time. Gosh, as if there wasn’t enough stress in my life without having to drive in peak hour craziness!

Rafael didn’t eat anything and the drink for the CT; I was able to put down his nasal tube. However, I forgot that his CT included and IV trace – therefore he needed a cannula in his arm :-(

By the way – glad I am such a courteous and prompt person! Did my best to get there on time and no one even saw us before 9:40 am – grrrrrr!!

We had to go to Day Oncology as well for Rafael’s blood tests, dressing change and central line flush. The nurse there also put the cannula in. There were 2 nurses, myself and Kari from Comfort First. It took all of us to hold him down. We could see that his platelets were low as his gums were bleeding and he had lots of bruises. We were trying to hold him down, but he is so strong. Finally got it in, but wow, what an effort. And what a tantrum that followed! Poor Rafael, he seems to get to a point and then he just “loses it”. I left and took his bloods down to the 2^nd floor. By the time I came back, they still hadn’t calmed him down. Kari worked her magic and finally we could calmly go for the CT.

After that he was fine and very happy all day. He kept very still for the CT and did what he was told. When we got back to the Day Oncology ward, he played games and drew lots of pictures. He also needed both a platelet transfusion and blood transfusion. That took the whole day. His arm started to bleed and swell up in the site were the cannula had been, so they ran his platelet transfusion at a higher rate to help it “kick in” faster.

We left at 6 pm with Rafael asking for spaghetti bolognaise. When we were less than 10 minutes from home, he asked how much longer and when I pulled up in the driveway – he was sound asleep and did not wake up for the rest of the night L He ate nothing all day and drank about 300 mls of chocolate milk L

A long and tiring day for both us xxx

10th November 2008

A lovely weekend spent at home. So lovely to catch up with friends and for the children to play :)

On Saturday I noticed that Rafael's last eyelash had fallen out. His eyebrows are very thin now too - his "monobrow" is no more!

Louise, I took your advise as Rafael really wanted the blue ones ;-)))

7^th November 2008

Already!! Wow, 1 week into November and I am finally writing something :-)

Gabriela and Rafael managed to survive 4 full days together without causing too much injury to each other!! Mind you, the house was a disaster site!

Mingo and I have had a stressful week trying to get in touch with Dr’s and experts. As I said, John Heath left last week and we do not meet our new consultant, Dr Peter Downie, until next Friday.

We received an appointment for his CT scan on 25^th November and he would not meet his surgeon until 4^th December. Then maybe he’d have surgery the week after and therefore, his 5^th round of chemotherapy towards end of December. That would be nearly 3 months since his last dose! The protocol for most of the world in treating Neuroblastoma is for chemotherapy every 3 weeks.

For the moment, no Dr’s are making any plans for Rafael. We are the ones who have to call and get the nurse coordinator to make appointments and follow up blood tests etc. also, the resident Dr’s have finished their rotation and it seems Rafael’s “new one” is not checking on him yet either!!

Now, after Mingo very bluntly told the nurse coordinator that since “we” are now Rafael’s sole care providers, this was all far too unsatisfactory, his CT scan has been brought forward to next Wednesday. We will me the surgeon the week after.

There was a very interesting article in The Age this week about a breakthrough in Neuroblastoma research - http://news.theage.com.au/world/scientists-turbocharge-immune-cells-to-fight-cancer-20081103-5gdu.html We are trying to contact some of the doctors involved to see if Rafael’s clinical trial here in Melbourne can be modified, or if we would be eligible to go there. It seems to work even better is given immediately after stem cell transplant. We will discuss this with Peter next Friday.

Rafael has had a good week, no fevers, no blood transfusions :-)) We made a quick visit to the hospital yesterday for a “quick” blood test and it still took 2 ½ hours just to get the result that all was ok – grrr! The day was not lost though as we caught up with Julia and Georgia for coffee, managed to find a car park in Elizabeth St and only had to wait 50 minutes to drop Mum’s mobile phone off for repairs J Found another car park right outside Daddy’s building and went up to say “Hi” to as many people as we could :-))) Fantastic view of the city and bay from there.

This morning Rafael had his hearing tested again and moderate to severe hearing loss in the high frequencies was confirmed. He had moulds taken of his ears and his hearing aids will be ready in a few weeks. He could choose any colour and I thought he would go for red, but he chose bright blue. Thankfully, we convinced him it was just “too bright”!!. Instead, he will have skin tone colour :-((

On a lighter note (weird how the government works) – if Dom or I held a health care card, we would not have to pay a yearly maintenance fee of $27. However, Rafael has his own health care card already, but that doesn’t matter! Too funny :-))