31st January
Rafael is finally home an reunited with his best buddy - Mr Leo Anne
30th January
Today I swapped over with Dom and he’s had a really stressful day!!
Rafael was due for his routine blood check and platelet transfusion. This had been set and in place since he was admitted.
Late this afternoon, someone at Peter Mac decided that they “don’t do transfusions on children”!!!!
WTH!!! This is Rafael’s 7th year of treatment at P.M. and we’ve never, ever heard this!!
So now, Rafael will be discharged from tomorrow so that he can go across to RCH for a platelet transfusion!! Even though he is still radioactive and not below the “safe” level!
It’s a nightmare and caused all amounts of stress today :-(
At the end of the day, I spoke to Dom and Prof was in the room. He confirmed that M A N Y doctors are now cc’d into the reports and tests Rafael’s blood is going through. They still need to complete some cytogenic testing, but the worst case is looking possible – AML
What does this mean for Rafael?
He has a huge battle ahead! Most NB children who develop MDS are in remission from their original cancer. Rafael has to battle 2 cancers at the same time!!!
We are in shock and we don’t know what to do next!!!!!!!!
Of course we want to keep fighting! One of the “benefits” of MDS could be a donor bone marrow transplant that could actually realise NB cells are bad and kill them too!!
It’s been a long and difficult road, this is our 8th year, but clinically, Rafael is so well!! Pain free and a very happy 10 year old boy
29th January
Up and at it early today, a quick scan to check the uptake to his tumours of the Lu yesterday.
While Rafael was in the scan, one of the assistants came and said that Prof Hicks wanted to talk to me. When I walked into his office across the hall, he asked the other doctors to leave and give us the room.
Alarm bells started ringing!!! I knew it couldn’t be bad news about the treatment or scan, as it had just been given and there wasn’t enough time for a “bad response”
As it turned out, the news was worse! Poor Prof, he’s had to deliver us so much bad news over the years and we just adore him!!
The “routine” blood test yesterday showed blasts (abnormal cells) in Rafael’s blood. The haematologist called Prof and he explained all of the prior treatment Rafael has had. That blood test result was NOT something they would see on a “normal” workday!
After speaking to Prof, they continued with further testing and sequencing of Rafael’s blood.
Long story short, they suspect Rafael has Myelodysplastic syndrome (MDS)!!
It is another cancer on it’s own, this time of the blood and can develop into AML (Acute myeloid leukemia)
We are SO angry with RCH as Rafael has been having blood tests 2 X per week for 2+ months, as well as a bone marrow/trephine aspirate <2 weeks ago – when were they ever going to pick this up? !!!!!!!
It took the Dr’s at P.M. 1 ONLY test to ask “What the???”
Prof Hicks called us down to his office later in the day, to show us the comparison scans from November and January. There is SO much less uptake of disease!!! We can actually see that the treatment is working!!! (As we knew it would!!)
Rafael always has a room with a view on the 9th floor ;-)
28th January
Rafael was admitted to Peter Mac and they actually had the room ready and we were able to go straight to the ward - that never happens! ;-)
He will have 1 dose of Lutetium (Lu177) (6Gbq) today and a higher dose of I131 MIBG (8Gbq) tomorrow. Prof Hicks ordered a routine blood test, as there was no test after Rafael’s transfusions at RCH yesterday.
We are hoping his level comes down by Monday so that he can be discharged and make it to school for the first day on Tuesday ;-)
His blood counts will be checked regularly and transfusions given as needed. The whole time he is at Peter Mac he will have to stay behind a lead shield on one side of the room
This is the 7th consecutive year he's had this type of treatment at Peter Mac and he is quite used to it now ;-)
The other patients aren't, as they just don't see children on the ward, ever! This is a very specialised treatment and the only children who receive ii are those with neuroblastoma. They have to make sure certain nurses are working on the ward, as not all of them can/want to look after children.
Rafael coped very well with the LuTate, no side affects at all.
Lets all hope and keep our fingers crossed that these doses blast the cancer out of his bones and especially his bone marrow!!!
27th January
A long day for Rafael and I as he had a blood transfusion and platelet transfusion so that he was “topped up” before tomorrow’s treatment ;-)
24th January
Rafael required another platelet transfusion today (<10)
His haemoglobin was right on the transfusion level (90)!! It was decided beforehand that if is was borderline, he'd wait until Tuesday.
22nd January
Rafael made it to the Quarter Final!!!!!
He was very happy because one of his friends could go along too and use Gabriela's ticket ;-)
21st January
Today Gabriela happily went off to camp for 5 days with Camp Quality.
This organisation not only supports children with cancer, but their siblings too! 5 days of fun!
I told Lela to not have too much fun ;-) ;-)
After spending so much of the last weeks at RCH with Rafael - she deserves it!!!
20th January
Rafael remained borderline for fever, but never peeked and was allowed to go home!!!
This pic shows his puffy face after nearly 24 hours of 120ml/h of saline being flushed through his body!
His output wasn't as much as expected - due to his kidney damage
We received a long email from Prof today and it looks like the plan is changing again!
Rafael didn't make it the game due to his very bad cold :-(
We want to try to keep him well enough to go to the QF on Thursday
19th January
The plan, the plan, the plan ....... yep, it's changed again
We weren't happy with the "new plan" last week and sent a message to Dr M over the weekend.
He is on ward rounds this week and was actually available to chat with us this afternoon! Priceless - as much time as we needed :-)
Rafael will now go back to Peter Mac for more radionuclide therapy next week, as originally planned, but he won't have it in combo with any chemo. He still has no white cells and is dependant on both blood and platelet transfusions
We expect him to continue this way until his marrow clears of disease
He is facing the HUGE risk of infection - there are 3 types - bacterial, viral and fungal. Any one of those could see him hospitalised indefinitely :-(
He will start another medicine, anti fungal as a precaution and he already takes an antibiotic every weekend. He will also have another PEG injection tomorrow to see if his white cell count can start to rise!
On the down side, his cold is really taking hold and he is really flat. It took more than 3 hours for the hydration to start today and there was a bit of "confusion" about the rate - grrr!!
He kept feeling warmer and warmer all afternoon - temp hovering around 37.8C
If it goes above 38C, they won't discharge him tomorrow
He is really looking forward to his last 2 games of the Asian Football Cup!!! Please let him have his fun!!!! Argh
We made it to the game tonight
Rafael was sad Saudi Arabia lost, but on the up side, he'll get to see Uzbekistan play again - their fans are very loud and fun ;-)
Rafael will spend the next 2 days in hospital. He has a terrible cough and blocked nose, praying he doesn't get a fever, or they won't let him leave, due to having no white blood cells
Tomorrow Rafael will start 24 hours of hyper hydration. That is fluid being infused at a high rate, so that his kidneys start flushing and working.
This is needed to give him a "better chance" of receiving a higher result on his kidney function test on Tuesday. For many chemo regimes and clinical trials, it has to be above a certain level. Without the pre hydration, he'd never get to those levels ;-)
We also have a special meeting with Dr Michael as we want to change his mind about the plan for using I.C.E next week. Fingers crossed x
16th January
We have been managing to go to the Asian Cup games every 3 days, but we had to give tonight a miss as we are all just so tired :-(
MIBG scan at RCH today.
I knew he needed platelets as the finger prick would not stop bleeding!!!
We met with Dr Michael afterwards and he had the bone marrow aspirate results - not good, as expected
He started out a bit "doom and gloom"
Given how Rafael's counts have been, we weren't too surprised
The trephine showed a lot of NB cells, about 60 - 70%!!! No wonder his stem cells couldn't graft! Too much cancer to fight :-(
However, these tests are 1 point in time at 2 spots in the hips. Our marrow moves constantly. If they re-did the test, the result could be completely different! Considering how clinically well Rafael is, we weren't too upset by this setback.
We have 1 more test next week - kidney function. After that, we will decide on the next step. At the moment, it looks like Rafael will have a combination of chemotherapy known as I.C.E to try to blast the cancer in his boney bone marrow.
We can't realistically go to the next planned stage when he still has so much disease in his marrow
It's a step back, a hurdle, but it's ok.
We still have options and Dr Michael is still fighting for Rafael :-)
A "quick" platelet transfusion was needed before we could leave and get to our next game of the Asian Football Cup :-)
13th January
Scans at Peter Mac, We met with Prof Hicks afterwards. He is always SO happy to see Rafael and have a chat! This is our 7th consecutive year of treatment at Peter Mac and they have watched Rafael grow up
They are "allowed" to call him Raf ;-)
The scan showed that there is no new disease!!! Yeah :-) And all of the other areas of disease are less intense. Still there, but not as active. This means the treatment has worked a bit :-)
Blood transfusion today.
12th January
An "ok" day for Rafa and I
Rafael had bone marrow and trephine aspirates this morning. He had to fast from last night. He was expecting to be very hungry when he woke up, so he "pre ordered" a Banana Up & Go ;-)
He was lucky that our friend Alison popped in for a visit and she bought one along the way
It took a really long time for him to wake up :-(
He had a small patch on his hip that was still oozing
I managed to get him fully awake by 12pm as he had a dentist appt. at 12:15.
The dentist was very happy with his teeth. She took an Xray of his molars and there are no cavities at all - he brushes well :-)
We then had to wait 3 hours for his echocardiogram appointment at 3:30 pm.
At 3pm, I finally dug out the appointment card, only to read "Tuesday 13th”!!! I was so annoyed with myself and hot and bothered that we'd wasted so much time waiting :-(
Oh well, what is done is done, can't change that :-(
I went across to Day Onc to check Rafael's blood counts today and found out that he definitely needs a blood transfusion tomorrow - his count was only 78
On the up side, he has 0.16 neutrophils today!!!! Let's see if they hold??
Tomorrow morning we are at Peter Mac for the all important GaTate scan - our scanxiety is in overdrive!!!!! I'm freaking out, due to his low counts, but also positive due to the fact he has no pain at all and he is really well!!! Argh - too much stress.
11th January
Another game tonight :-) The Iranian fans are very loud ;-)
9th January
Rafael's counts weren't great today and he needed a platelet transfusion, but at least he's lasted a whole week without a transfusion!!!
Sadly his white cell count is only 0.3 and 0 neutrophils!!
On the up side, Rafael was well enough to attend the opening match of the Asian Football Cup tonight!!! Socceroos V Kuwait. Rafael loved the game, even in the rain. He especially loves his prize for being named “The Continental Fan of the Match”
4th January
He will have Bone Marrow Aspirates AGAIN next week and they should give us a better idea of what is going on!!!
He is doing really well, pain free and very happy :-)
2nd January
We thought that Rafael would definitely need a platelet transfusion, as his legs were covered in bruises :-(
As it turned out, we were right, a count of < 10 :-(
More shocking and saddening was the fact that he only had 0.29 Neutrophils!! :-( They are going down! We are not losing hope, but it looks like the graft hasn't worked.
