Sunday, 30 June 2013

Blog: June 2013

30th June 2013

Gabriela and I are heading out of Chicago today for the long trek home.

I really enjoyed the Conference, some fantastic presentations by some of the top docs ;-) 

Gabriela played in the Kid's room each day and enjoyed her time too.

Was great to catch up with old friends as well as make some new ones :-)

27th June 2013

Dom took Rafael into Day Oncology today for his blood transfusion. They had a surprise visit from some of the Wallabies players - "small boys" !!!

26th June 2013

Gabriela and I left this morning for Chicago. The flight was open, so we knew we'd get on, but were hoping to get a business class seat - and we did!!! Lela was super excited ;-)

Nanna slept over last night to look after Rafa today and take him to school. When he woke up, he didn't want to go and was trying to "pull one over" Nanna ;-) She ended up calling Dom and he talked Rafa into going. It was just for 2 periods again :-)

25th June 2013

Rafael went to school for 2 periods today and I left him there. He seemed to enjoy it, even though he complained a lot about going ;-)

I took Rafa to our local hospital today for them to do the blood test and fax results to RCH. Couldn't be bothered driving in there just for a test ;-) Finally got hold of the nurse in charge of the ward in the evening and Rafael's Hb is down and he needs another transfusion tomorrow.

Later, day oncology called to say they would be too busy tomorrow and for us to come on Thursday instead :-)

24th June 2013

I took Rafael to school today to visit his friends. They all knew he was coming and were so very excited to see him :-)

21st June 2013

As expected, Rafael needed another platelet transfusion today. It was very quiet there :-)

19th June 2013

Another check up today and appointment with our new consultant :-( He's not warm like Dr Peter, but he seems ok.

Long story short - blood results took more than 2 hrs today!! Usually it's about 45 minutes!

Initial plan was to have Rafa go in tomorrow for bone marrow aspirates, wait 2 weeks for results an then make a plan for chemo based on that.

However, at the last minute the interim blood results were through which showed both neutrophils and white cells have doubled since last Friday!!! Woohoo :-)) WCC = 1.0 and neuts 0.18 :-)

We have some action!

Therefore, Dr Sullivan decided to wait another 2 weeks for Bone Marrow aspirates, as the more white cells to count, the better to test.

I will take Rafa back on Friday for blood tests as his platelets were only 28 today, but we don't need to see a Dr for another 2 weeks :-)))

I go to a NB conference in Chicago every year. This years list of speakers reads like a "who's who" of NB experts!!! It's next Fri & Sat and I have decided to take Lela with me to keep me company on the long journey :-)))

Dom will take a few days off work and hold the fort ;-)

14th June 2013

I was called out to go to LA yesterday so Dom was on hospital duty today ;-)

As it turned out, Rafael needed both platelet and blood transfusions :-(

It was a long day for my boys, but they got out in time for peak hour!

9th June 2013

As  expected, Rafael needed a platelet transfusion today. We had to go onto the ward for him to have a finger prick blood test and it took a while for the nurse to get any blood. 

For a while, we thought "maybe" his platelets were ok as his finger didn't bleed much :-) However, we went downstairs to get some lunch and even though he had a bandaid on his finger, it started dripping blood :-(

So, our day ended up taking about 5 hours to complete = tired and grumpy everyone :-(

7th June 2013

The meeting went ok. His name is Dr Michael Sullivan and he's from New Zealand. His specialty is genomics and one of the 1st things he wants done is a full molecular study of Rafael tumour and markers.

He will also check for the ALK mutation. He did say that the incidence of ALK mutation is not about 8 - 14%, that up a lot on the 5% I had read about. I guess more children are being tested now.

We talked a lot - over 1 1/2 hours and we have some direction of where we are going.

He is a representative of SIPOEN (European NB group) and he prefers to follow their trials. Might be good for Rafa as he doesn't qualify for many COG trials. 

Short term plan - repeat Topo/Cyclo once neutrophils are up to 1.0, but can do if they are at 0.5. Possibly the end of next week.

Then, re check everything - Bone Marrow, GFR (kidneys), Cardio and Hearing. As well as scans.

Based on those results, a new plan will be made.

He is very concerned about what they saw on the last Bone Marrow aspirate. It seems that only a certain percentage were NB cells and the others have the docs perplexed at the moment. They are thinking that maybe ?? the radionuclide therapy has changed the DNA. They found a translocation of chromosome's 7:16 and they don't know what to think!!

They are suggesting that it may be pre leukaemia, but are hesitant to state that's what it is. We are all waiting for the next aspirate and trephine to see.

At the end, I said to him  "When can we take Rafael home??" He said "I think we can manage that by the weekend" - HAPPY DANCE!!!

By the time we got all of Rafael's medicines for home, had another IV antibiotic and were disconnected, we didn't get out of there until after 4pm.

My friend picked up Lela from school and we were home and able to surprise her!!! Rafael went up to her and they hugged and said "I missed you"

Rafael's hair is almost gone and he's wearing a beanie that my firmed made for him. We are trying to convince him to let us shave the rest :0(

He's lost over 1 kilo in hospital.

We had pizza tonight and his BFF Kane came over to play Minecraft with him and Rafael was his happy, usual self XXX

6th June 2013

A stressful and long day today!! 

Long story, but in short, the oncologists wanted to give Rafael an anti viral that would have damaged his kidneys even further. They asked the hospital Board for use of a different drug and it was refused  When Dom found out, he point blank told the doctors that they could NOT give that drug to Rafa!!

Many meetings and discussions took place, the docs can't even prove that Rafael does in fact have a fungal infection!!

In the end, the infectious disease docs pointed out that a CT scan from 2 years ago showed the same lesions as seen 2 days ago on CT. The U/S showed nothing. Docs backed off and agreed with Dom :-)))

Rafael's "special Saint" was shocked and offered to speak to docs for us and also offered alternate solutions.

At the end of the day, he wrote "As I've always said, having a passionate advocate is more important than having a good doctor. Dom and your roles as pilots charting Rafael's journey through rocky straits of a stormy sea has prevented the shipwreck that would otherwise have occurred. Well done and hopefully we will reach a calmer place."

To top it all off - we found out today that Dr Peter Downie won't be Rafael's oncologist anymore!!!!! And he didn't even tell us, it was the new oncologist :-( He has arranged a meeting with us tomorrow to go through Rafael's history and discuss what to do next.

On the "nervous" side - he's the same doctor Dom was disagreeing with today!!!!

5th June 2013

We received a surprise visitor today. Charys is another NB warrior and she was having her regular MIBG scan today and they popped in for a quick visit.

We had to head down to ultrasound as the CT yesterday showed lesions on Rafael's kidneys and they wanted to have a different look. I had to leave Rafa there with the nurse, because I was being picked up at 12:30 to be pampered!!!!

I was very spoilt today!! Challenge now has a massage therapist at Challenge House on Wednesdays and Fridays.

Renee has replaced Micka at Challenge and she popped in yesterday to ask if I'd like a 1 hour massage!!! Umm - let me think about that ;-)

They have a driver who picked me up and dropped me back and Renee stayed with Rafa while I was gone ;-)

It was really good, I relaxed a lot!!!

4th June 2013

Rafael got another fever last night, up to 38.4C, not too high, but enough to worry the doctors.

They've requested a CT scan today to rule out a fungal infection.

Unfortunately for Rafa, they needed to use a canulla for the tracer ;-( He wasn't happy at all :-( But he's such a trooper and the doctor that put it in got it 1st go!!

Alas, once we were down in CT, the size of the canulla was too small and it blew 1st go !! Another doctor came down and managed to get the right size in 1st go - phew!!!!

3rd June 2013

Rafa asked me to cook a steak at home and bring it in for him 

Out of bed - only for a ride to X-ray 

Doctors want to check if he has a chest infection due to his temperature spike last night.

2nd June 2013

Day 7 and still no sign of neutrophils  Lots of visitors over the weekend cheered Rafa up a lot!!! :))) 

Rafa got a fever again tonight :-( Bugger!!!

1st June 2013

Doctor thinks it might still be a few more days before neutrophils recover  

Rafael's hair is really falling out a lot now  

Another platelet transfusion today. 

He had "the best day" today with a visit from Lela and his friend Kane  

Day 6 inpatient