Saturday 28 February 2015

Blog: February 2015

28th February 

Rafael has been fever free for over 24 hours now!!!

We negotiated with Dr Michael yesterday that if he remains fever free, he can go home tomorrow for a few hours in between antibiotic infusions ;-) All fingers crossed for tomorrow :-) 

27th February

Rafael's temp is back up to 39C + :-( 

The team came to meet with us and they have asked Peter Mac to do an FDG PET scan to further check for infections. Of course, it was too late to get a booking by that time

We also met with Dr Michael to discuss the next stage of Rafael's treatment, once he's over this. 

He was due to start chemo last Thursday. As we all know, Cancer doesn't wait for infections to go away!!

We are hoping to do another set of scans at Peter Mac in the next week or 2, so that a plan can be made. The major issue is that Rafael's blood counts have not recovered at all. He is relying on all of the blood donors in Australia at the moment


25th February

We were kept up very late last night, trying to get Rafa to take oral meds :-( 

He managed 1 dose of antibiotics, then vomited, then refused to take the other 2 :-( 

Woken at 6am today by nurse "trying" to get blood from his line, that is a struggle on a normal day, but when he's sound asleep - arghh!!!




24th February

Rafa is still inpatient :-( 

He keeps spiking fevers :-( 

He is so sad, depressed and bored. He's been sleeping a lot throughout the day :-( 

He's very weak, tired and isn't eating much at all. Dom even ordered a pizza to be delivered, but he couldn't even finish a slice

He finally got to see Lela again on Sunday after her soccer game, as she was away at Camp all of last week.

He has 2 bacterial infections still and the antibiotics should be fighting them. Yet he still keeps spiking temps (39C)!

The doctors are now worried that his fevers are being caused by a different infection, maybe fungal??

The doctors had to resort to giving him an antibiotic that he can't have! It's called Gentamycin and he wears a red band in hospital, so that everyone knows not to give it to him! However, he has 2 bacterial infections and the other ones weren't fighting those types. They've modified the dose and are testing his blood every day to check the residual levels.

Rafael is having a CT scan now, to check. The young Dr who attempted to place a peripheral line in his arm blew the veins - twice!!!! Rafael is really unhappy about that!

We are meeting his doctor this afternoon, hopefully he'll have some good news for us!\


21st February

Rafael's fevers have been going all day :-( 

However, the nurse just checked and its 37.9C :-) 

Woohoo, now we can start counting 48 hours!

Unfortunately, they have found a 2nd infection, in his urine! They have taken more blood cultures today and have decreased the dose of 1 antibiotic and cut the the other one out.

Rafael has been sleeping a lot, he is very weak and has a blood shot eye, but says he is feeling good :-) 



20th February

After 17 hours in the ER, he was finally transferred to a ward!
They started him on IV antibiotics straight away last night. His blood tests came back very low, as expected

He also had a platelet transfusion overnight.

His temp was up and down, but always above the "magical" 38C

His Hb had dropped even lower today (66) and they finally gave him a blood transfusion! Because he's been feverish on and off all day, it's hard to know if the transfusion caused a spike or not, but this afternoon his temp raced up to 39.9C!!!

After that, we were able to convince him to take some Panadol and his temp slowly came down. 

He fell asleep this afternoon and didn't even realise he'd napped

Tonight a Dr came to inform us that the blood tests had picked up an infection - Gram Positive "something". This means that they can now grow a culture of it and work out which antibiotic will fight it the best. Given his 0 white cell count - any infection is very serious!

He is currently on 2 types of IV antibiotics and now that they know which type of infection, they are able to change one of them in the hope it is more effective. However, this one is also known to affect the kidneys and Rafael has a "block" against it's "cousin"!! At the end of the day, the doctors have no choice. Given his low counts, the risk to his body Vs the risk to his kidneys is too high and they have to try the antibiotic

The "rule" for being discharged is now fever free for 48 consecutive hours. So each time Rafael's temp spikes, the counter starts again

We think it will be Monday at the earliest before he is released - wishful thinking???

Gabriela came home from school camp today and Rafael was SO happy to talk to her and hear about her week :-)

After that, all he wanted to do was "talk" to Leo!! In case you don't know, Leo is deaf and can't hear a thing! So, using FaceTime as a communication tool is not the best ;-) 



19th February

One very sick and anaemic little Warrior, who also has very low platelets and still no white cells!!

His temp has been hovering all afternoon :-(

He was due for transfusions yesterday, but we pushed them back until tomorrow, hoping that he'd be able to hold off.

He made it to school on Tuesday and Wednesday for a few periods, but today he was too weak to even move off the sofa :-( 

Thankfully he had his BFF to keep him company and sleep the afternoon away ;-) 


Unfortunately his temp has risen way too much, up to 39.3C and that means an automatic trip to the front of the queue at ED

Due to his 0 white cells - we don't know how long he will have to stay :-( 

14th February

It looks like we will still have to visit RCH twice per week :-( 

Rafael's platelet count had dropped a lot and he did need a transfusion. We were really hoping to get to once a week transfusions :-( 

Hopefully that will happened soon!!

11th February

Rafael’s counts were all very low and he need both blood (70) and platelet (<10) transfusions. It was a really long day for Rafa and I

Still no white cells!!!! Even after the PEG injection on Saturday :-( 

On the upside, he's now topped up with "red cordial" and is aiming to stay at school all day tomorrow!!

Let's see if I get a call after lunch??

Given that he held on to some platelets for 1 week and his Hb is only dropping slowly (over 2 weeks), we may be able to decrease his hospital visit to once per week ;-)

We will check his counts again on Saturday and if they are still holding, we'll just need to go on Wednesdays - yeah!!!

10th February

Rafael struggled and managed to stay at school for 2 whole periods :-)

His teacher called after recess saying that he was really tired and wanted to come home :-(

This was only his 2nd day at school so far this year.



7th February

Rafael didn't need any transfusions today!!!!

He just scraped through with a haemoglobin of 92 and after his platelet transfusion last Wednesday - today they were at 47!!!

It's been a very long time since he's gone 1 week without a platelet transfusion :-) 

He had a P.E.G. injection again today to help boost his White Cell Count. (Today = 0.2) :-((((((
His tongue ulcer is better :-) No fevers and Rafael was able to talk a bit today :-) 

6th February

As you can imagine, we've had a very stressful week

But ...... we finally received some good news today! The bone marrow aspirates from yesterday show no sign of AML!!!

Rafael had a platelet transfusion on Wednesday and then I met with Dr Michael afterwards. He had reviewed Rafael's latest blood tests and BMA's from RCH and he was not convinced that Rafael had AML. He requested another biopsy yesterday. Some of the results will take about 10 days.
He asked us to come in and meet him today, to discuss the initial results.

Unfortunately for Rafael, he connected his jaw with Miss Maggie Moo yesterday and has woken up today with a huge ulcer on his tongue, where he bit it as they connected

He has gone downhill very quickly and his temp is hovering close to 38C

Dr Michael prescribed another antibiotic today to help ward off infections. That takes Rafael up to 4 different preventative medications and he hates them all :-( 

The plan going forward is now back on track ;-) 

Rafael has a "permanent" booking for transfusions twice per week at RCH and in ~ 3 weeks time he will have a modified dose of the chemo regime I.C.E.

Scans and bone marrow tests to follow afterwards

I feel I need to add a footnote: Prof's "feeling" is that any blasts in the marrow would have been irradiated last week with the treatment Rafael had. Dr M doesn't agree! So whilst we are happy and over the moon, we still remain optimistically cautious and will be looking out for any more blasts appearing on blood tests 



5th February

Rafael had bone marrow and trephine aspirates again today. They are still checking his marrow for any function and any other diseases, besides NB :-( 




4th February

At RCH ….. again ;-)



3rd February

Rafael made it to school!!!! He's only staying for 3 periods, but it gives him a chance to catch up with his friends and meet new ones!!!



2nd February

Where have the last 7 years gone?? Lela is heading off for her first day of High School, she's a tad excited ;-)


Rafael and I headed to Peter Mac for a follow up SPECT/CT scan - to check on the amount of radiation that was up taken by his tumours after the treatment last week.