Saturday, 5 September 2009

Blog: September 2009

27th September 2009

Another busy weekend for us :-) :-)

It was the AFL Grand Final on Saturday and our team was already out :-( We went to Stacey and Goce’s house to watch the game there, have a bbq and enjoy the weather - not!! It’s nearly the end of September and it only reached about 10C the whole day + it rained :-( :-(

We took Rafael to Dr Cong once again in the morning. He feels that most of Rafael’s warts have gone and will check again in 2 weeks.

We didn’t have a very late night on Saturday, but the children did NOT want to wake up on Sunday morning :-) I think Rafael woke around 10 am and Gabriela strolled down the stairs at 11:20 am :-) :-) Sleeping beauty xxx

Our day was uneventful, most washing, cleaning, blah, blah!

Patrice called later in the afternoon and said she’d drop in for 5 mins. Well, a few hours later, spaghetti & meatballs for the children and pizza for us, they left :-) :-) We had a great time! Thanks Patrice for having already planned to make pizza and having all the ingredients ready to go! xxx

We received some very sad news on Saturday from another NB family in Portugal. Their beautiful daughter, Sofia, was responding very well to treatment, but she got an infection and within 24 hours it took her little life. Hugo, Susana e Gabriel - nos somos muito triste. Ficar com Deus xxx

Also, we are appealing to everyone we know to please help another Aussie NB battler, Imogen. If you can spare a few dollars at all, please consider helping her obtain her own special WISH - xxx
24th September 2009

Another year older :-( :-( Oh well, can’t avoid it!

We met our friend Cherie at the café and Rafael & Gabriela ate a whole small pizza between them and then ice cream!! Thankfully Rafael wasn’t fasting, or we’d have been in big trouble! We planned to meet Cherie at 12pm, and from about 11am, Rafael kept asking if we could go NOW because he was very hungry :-) and he was!

Cherie came to Peter Mac with us to keep us company. We got there right on time. I had already put Angel cream on Rafael’s hands and inside his elbow. The nurse told us they were running behind schedule, but when she saw that Rafa already had the cream on, they got his injection ready pretty quickly.

We went off to a little cubicle and Cherie took Gabriela to the Fitzroy Gardens to see baby ducks :-)

The nurse blew the vein in Rafael’s arm on her 1st attempt at getting the cannula in :-( She called a doctor, but he couldn’t fix it, so then they had to do it again in Rafael’s hand. Rafael cried a lot, not so much through pain, but because he likes to watch and could see the big needle going in :-(

The tracer used for this scan was Gallium and it is very good at detecting receptors on tumours. After ½ hour, Rafael went into the PET/CT scan room. I had to leave for the CT part, but was allowed back into the room for the rest. Rafael was a good boy, he lay very still. He thought it was funnier that he’d had to take most of his clothes off due to metal in his jeans and shirt and belt :-) :-)

As we were leaving, we ran into Ruby and her Nanna, waiting to have the same scan :-) :-)

Mingo decided to meet us and we all came home together :-) We had offers of baby sitting so that we could go out and have dinner for our birthdays, but it had been such a long day and I wasn’t up for it L In the end, we took a magnum of 10 year old shiraz around to Simone & Mark’s and enjoyed it with friends :-) :-)

Today the children did not want to wake up. At 10 am when the nurse came, I had to get them out of bed :-) :-)

Mady and Jo came for a visit in the afternoon and the children all played very well together.

After trying to arrange many meet up’s Tania was finally able to personally deliver Rafael’s hand made quilt. I will put some pics up soon. Than you to Tania, Linde and all of the stitchers from around the world who sewed a beautiful dinosaur quilt for Rafael :-) :-) Such a selfless and caring group xxx

As I mentioned, Rafael’s doctors are very open to emailing and discussion. Today I emailed Dr Peter Downie and Professor Hicks about Rafael’s scan and plans. By the end of the afternoon, both had replied – such amazing doctors :-)

It probably won’t make sense to most of you, but I’ll paste the emails here instead of trying to translate them!!!

Hi Tash and Dom
There are some very complex issues to consider and discuss here. I was planning to ring Peter to discuss the ramifications of the marrow trephine and Ga-68 octreotate scan and to further consider therapeutic options. After these preliminary discussions, we will need to obviously discuss these further with you. Unfortunately I’m heading overseas next week and so I won’t be able to go to the multi-disciplinary meeting at the RCH, which would be the ideal forum to have these discussions so I will update my colleague Grace Kong on Raf’s case so that she can be the liaison here while I’m away. The decision regarding the need for another MIBG is somewhat dependent on the other therapeutic plans.
Dear Tash and Dom,
I had a discussion with Prof. Heloury yesterday at MMC, and as you know he feels that he would be able to remove most of the residual.  I’m quite pleased that you were able to meet with him as I think he brings a different expertise to us here in Melbourne.  With regard to the vaccines, I’m still waiting to get a heads up from the lab on how we went with the most recent collection – hopefully by Monday and then we can start.  My own feeling about the residual neuroblastoma cells seen on the trephine is (after thinking about this over the past week) that if there is uptake by nuclear medicine, then this should be a useful therapy to eradicate the cells.  Which as you know is an approach that is done with some of the NANT trials.  I don’t know how important the timing of the vaccine study is; theoretically now would be good as his immune system is recovering and there is minimal truly active disease remaining – as we discussed last time we met.  I don’t think there should be any contraindication to starting the vaccines based on nuclear therapy, but if we are to do surgery I would suggest we do this first, followed by nuclear therapy which could also be done with the vaccine therapy.  I will try and get onto Rod Hicks tomorrow to see what his overall thinking about this suggestion is. 
So, did that make sense???? I guess it means that

a)       the stars are aligning indeed
b)       surgery might happen much sooner than expected
c)       If the Gallium scan was +ve, then Rafael might have a newer form of radionuclide therapy.

Our next consult with Dr Peter is next Thursday, 1st Oct. I go back to work on Monday and will have a reserve roster for 4 weeks. This will be VERY difficult for us to juggle, as I won’t know when or where I am going until the last minute when I receive a phone call :-( But it can’t be avoided and 4 weeks is better than 8!!! 

Also, Domingos will be in Sydney for 2 of those weeks playing soccer at the World Master’s Games!! Go Laranja Mecanica !!!!!!!!!!!!!!!!!!!!

22nd September 2009

Our trip to Monash went well. We took the toll way and it was about 1 hour each way!

Professor Heloury has a very strong French accent and was difficult to understand at times. I said to Patrice that next time we meet him, she needs to come along!!

He was very nice and spent a lot of time with us, drawing very simple diagrams of the tumour and it’s location. The good news is that is seems to have come away from Rafael’s vena carva and is now only attached to the left side of his aorta and his left renal artery. Prof believes that he can perform the surgery without too many risks and he could get between 90 – 98%. He would also take any lymph nodes that he sees. He will scrape the aorta as much as he can without putting Rafael at risk.

So, surgery is back in the plan!! It won’t be laparoscopic as most of Rafael’s major organs have to be moved out of the way first (liver, spleen etc) :-( :-( He thinks it would take between 3 – 5 hours.

Now we just have to wait for all of the stars to align!! No, seriously, I mean we need to wait for 3 hospitals to communicate – as if!! :-) :-) The timeline for surgery (Monash MC) will depend on MIBG therapy (Peter Mac) and Tumour Vaccine (RCH) – see what I mean??

Thankfully we are going to Peter Mac tomorrow and I might be lucky enough to grab Prof Hicks. Otherwise, we’ll have to wait until next visit with Dr Peter to find out a plan.

Also, I am getting very proficient at emailing doctors and asking lot’s of questions and Rafael’s doctors are usually pretty good at replying :-) :-)

Earlier in the day Peter Mac hospital called to talk to us about a different PET scan for Rafael. He doesn’t need to fast for this one!! Yeah :-) :-) He will have it tomorrow as booked, but it is a very specific PET scan that will detect some receptors Rafael has and Prof Hicks will be able to decide if Rafael is eligible to have more MIBG therapy, or Ultratrace or even Radionuclide Therapy. The catch is that it costs $800! But hey, it’s not really a “catch” is it?? Rafael needs this type of scan and who are we to say no!!

We enjoyed our pizza at Dani’s a lot :-) :-)

Today we went to visit Simone and Daniel. I ended up taking all the children to McDonalds for lunch and a play :-) They all had a great day, but 3 children playing together NEVER seems to work out! 2 or 4 is good, but a 3rd always seems to feel “left out” :-( :-( LOL

21st September 2009

Busy weekend for us :-) 

On Saturday Gabriela & Rafael went to a birthday party at a local ice skating rink (which is not really ice). They had a ball!! Rafael’s feet were too small for skates, so he had these little 2 bladed slip on skates. They worked to his advantage as he was able to balance really well and was off “marching” around the rink :-)

Mingo played soccer on Sunday morning and Gabriela wanted pancakes. So at 9:30 I asked her to wake up Rafael to see if he wanted to go to the café for breakfast. They both had chocolate pancakes with chocolate sauce and ice cream – yummy :-)

Our friends invited us for dinner as it’s school holidays and no one had to be up early today. The children all had fun playing together :-)

Today we are off to the psychologist at 11am and then have to be at Monash by 3pm. A friend of mine suggested “don't forget to pack your street directory, passport & 5 days rations” – I think we’ll take her advice as we’ve never been there and not quite sure how long it will take!!

Will try to update later with news from the surgery consult.

September is birthday month all around us. We have been invited to Daniella’s tonight for wood fired pizza :-) :-) She knows how much we LOVE her pizza’s :-) Feliz Aniversario Dani xxx

18th September 2009

Rafael’s blood cultures came back –ve for an infection – yeah :-) Therefore he doesn’t need to see a doctor next week.

Mingo celebrated his birthday yesterday xxx The children didn’t wake up until well after he’d left for work – 9 and 10 am!!!

We received a call from our nurse co-ordinator saying that the new surgeon could see us that afternoon, but as it was Mingo’s birthday, did we want to wait??? The appointment will be at Monash Medical Centre which is a long drive from here (maybe 1 hour??). After a few more calls, it was decided that we’ll go on Monday instead. His name is Professor Yves Heloury. Couldn’t find too much info about him, but what I did read is that he likes to perform minimally invasive surgery (laparoscopic) – that would be great for Rafael!!

The doctors decided to get the nurse to take more blood again at home for testing. The result were HB 98, Platelets 62 and Neutrophils down to 0.7. Not too bad considering Rafael has a really bad cough and seems to be fighting it well :-)

We made a yummy chocolate mud cake for Daddy and had pizza for dinner. The children remember last year when we held a surprise party for Daddy and they were convinced that people would be arriving at our house any moment :-) :-) Too cute xxx

Today we received Rafael’s appointment for his P.E.T scan. It’s next Wednesday at 2:30pm and he has to fast from 7am!!!! How could they do that to a 5 year old?? We tried to change the time, but “no can do”, so now we are checking with Prof Hicks if we can do it in a couple of weeks time, to get an earlier appointment.

Still don’t have an appointment for the MIBG scan which is the most important one at the moment :-(

We enjoyed a lovely dinner to celebrate all of our birthdays at one of our favourite restaurants in Melbourne – China Max (Essendon North) It was as divine as I remembered :-) :-) :-)

Mingo’s cousin Ivan also joined us and the children were “in heaven” to see him!! They had a ball :-)

We came home to watch the last 3 quarters of the football. Poor Doggies – so close :-( :-( :-(

16th September 2009

Back from another 2 days at the hospital :-(

Rafael went off to Kindy yesterday very happy in his Western Bulldogs clothes for footy day :-)

His teacher called me about 10 am to say that he had a fever of 38.8C and was very tired :-(
Anything over 38.5C means a trip to the E.R. :-(

When I got there, I checked with our thermometer and it was 39.3C – definitely off to hospital!

We got put straight through in the ER, but blood tests etc took ages!!

Rafael was actually much better by this time, temp had dropped, they gave him some IV antibiotics and asked us to stay for 4 hours for monitoring. About 4pm the Dr came in and I mentioned that Rafael was cold and shivering, temp check showed he was back up to 38.5C – therefore we had to stay :-(

Gabriela was at a sleep over at a friends house and thankfully she and they were very happy to extend for another night :-)

Mingo came in after work to try to get some “sleep” in a 4 share room!!

I picked up Lela this morning and we went to relieve Mingo so he could get to work.

The day passed, Rafael had not had a fever all night and the “opinion” was that we probably would come home today.

After checking with Dr Peter, the doctor confirmed that indeed, we could go home, after 1 more IV infusion J with a follow up appointment next week. They have done some blood cultures from Rafael’s central line and those results won’t be ready until tomorrow afternoon.

After everything was over, the children managed to fit in 45 minutes of playing in the Starlight Room :-) and Rafael’s favourite Starlight Captains were there :-) :-)

14th Septmber 2009

Forgot to add MORE blood .....

Last night Rafael punched Gabriela in the nose - lots of blood :-(((((

14th September 2009

Blood, blood, blood …… it’s “going around” …

It’s the Year of the Blood Donor – PLEASE consider donating!!!

I’ve just finished reading the “Twilight” series my Stephanie Meyer

I’ve just finished watching 2 season’s of True Blood

In the past 10 days, Rafael has had 2 lots of 70mls of his own blood taken to create a vaccine. This equates to about 20% of his whole body’s blood – each time!!! Imagine this – when we donate blood, we give ~ 10%!!!

Rafael has had sooooooooo many blood & platelet transfusions in the last year that I’ve lost count (need to go back through blog to check!)

So – you can see what I mean; it’s ALL about blood these days :-) :-) :-)

10th September 2009

D Day, meeting day, results day ………

Where to start???

All results were back

GFR is improved, but is 60 now, still too low to do high dose chemotherapy; it needs to be at least 120.

CT scan is much the same as last time, there are small spots of calcification showing up and the tumour seems to be the same size. The contrast wasn’t very clear (most of it leaked out last week). His kidneys look good on the CT.

The 70mls of blood taken Friday week ago worked perfectly to create Rafael’s vaccine. However, they only got enough for 1 vaccine and Rafael needs 3. Therefore Rafael is back to having an injection of GCSF for the next 4 days and I have to take him back in on Monday for another 70 mls to be drawn :-(

The Bone Marrow Aspirate showed neuroblastoma in the trephine (bone part) :-( :-( :-( What does this mean??? I don’t know! His BMA results have always been a bit vague, the test is a bit “hit and miss”, it all depends on where the NB is on that day, at that time, as the Dr passes the needle into the bone marrow. Is this new NB? Who knows!!!

Options for now –

Still need to have MIBG scan at end of Sept which will be 12 weeks post MIBG treatment.

Will do PET scan at same time

High Dose chemotherapy is definitely off (would have blasted NB in bone marrow!)

Consult with Peter Mac again with view to repeat a round of MIBG therapy or other maybe Ultratrace???

Consult with new surgeon at RCH. A new doctor has arrived form France who is VERY experienced in NB operations.

Maybe start vaccine trial when it’s ready, as long as it wouldn’t interfere with MIBG therapy.

So, we left feeling quite deflated L We sort of thought that we’d have SOME KIND of plan today, but this roller coaster ride just keeps going and going and going.

Clinically, Rafael is fantastic, he is doing really well. His weight today was 15.45 kg and he is now 101.8 cm :-) :-) He has a full mop of hair and people are telling me to cut it, but I can’t – not yet :-) :-)

Gabriela has an extra week of holidays and tomorrow is her last day. She is a wonderful little girl and has coped with all of this remarkably well xxx

We got to catch up with another NB Mum today that we haven’t seen for a while. It was great to talk to her :-) and see Ruby doing so well :-)
9th September 2009

We enjoyed a relaxing Father’s Day. Rafael was the first one up after me and I heard him running upstairs saying “breakfast in bed”!!! He had remembered that they promised to make breakfast for Daddy :-)

It was hard to wake Lela up to help, but they did a good job J and gave him their presents.

We spent the afternoon at Patrice’s house enjoying a bbq with friends – a great day :-)

Rafael was able to go back to kindy on Monday as we didn’t have any appointments. His teacher trialled the new FM system Rafael has to help him hear the teachers. It seemed to work well.

Today I had plans for Rafael to try 2 new activities to keep him occupied next term, Kinda Music and Play Ball. Except when we got to Kinda Music, he wouldn’t go in, not even for a look and then decided he wouldn’t try the other one either!!!! So there went that theory :-(

In the evening, Gabriela’s school held their Performing Arts Festival. Gabriela was “the wind” and we all had a great time watching her class group sing and dance :-) Dom and Rafael stayed to watch the grade 5/6 play, but I came home for some time out :-) :-)
3rd September 2009

Another busy day at the hospital. We had to be at CT by 9 am to start drinking something (?)

The traffic was a nightmare and it took me more than 1 hour :-( I don’t get stressed anymore though. We’ll get to the hospital when we get there!

Rafael already had Angel cream on the insides of his elbows to have a cannula inserted for the CT and GFR.

We took the drink upstairs and he had to drink a certain amount every 15 minutes.

Meanwhile, the playroom was open and he was very excited, so he stayed in there, and I kept popping in every 15 minutes to get him to drink. He drank it all, no problems :-)

He got a little stressed over the cannula insertion, but really, he handles it all so well. Don’t know how I’d react to seeing that needle go in!

Then it was back downstairs for the CT. They also inject a dye through the cannula and that is used for contrast on the images. The scans were very quick, just 2 or 3.

Next it was off to nuclear medicine to visit our favourite technician, Duncan. He had the GFR all ready to go, injected through the cannula and then he took it out. After that, Rafael had a blood test at 1.5 and 3 hours post the injection.

We went to McDonald’s, but Rafael only wanted potato chips (crisps) !! Can’t win :-(

We finally got to go to the Starlight Room. It has been SO long, that 1 of Rafa’s favourite girls didn’t even recognise him!! She asked him what his name was? They haven’t seen him with hair :-) :-)

Final bloods were done by 2pm, dressing change was done and we were out of there :-) :-) :-)

1st September 2009

Yes, still VERY busy!!!

Rafael had to be at the hospital at 9:30 for his Bone Marrow Aspirate. He was very annoyed that he couldn’t have breakfast :-(

Mingo came along too, for support, as we don’t think either of us could have coped with another emergence distress situation :-(

We were very prepared this time, with our letter for the anaesthetist. He was very understanding and spent time with us going through it all. We decided not to go for the full “knockout” drug, but try a smaller does which had worked before.

Rafael was very calm and went happily under with Daddy by his side. We went to grab some breakfast and just after we got back, they were already paging us to recovery.

Low and behold, there was Rafael already trying to sit up and wake up. No yelling, no hitting, just a little groggy and tired :-) :-) :-) Yippee – the formula worked :-)

He had a few sips of water and then wanted yoghurt. Unfortunately, as soon as it was down, it was up again! and continued for the next few hours. We were able to leave on time, with no problems. Rafael was pretty sleepy all afternoon, but he didn’t sleep, just laid on the bed watching tv :-)

1 comment:

  1. Rafael is really a very strong boy. Everybody here is cheering for his recovery. Next month i will be there to meet him in person.