Sunday 31 August 2014

Blog: August 2014

29th August

Rafael finally made it back to school today!! They had an excursion to the Lego Education Centre and he didn’t want to go, but I made him ;-)

28th August

Rafael was tired and his leg was hurting where the vas cath had been removed, so he didn't go to school today :-( 

Tonight Gabriela had her Confirmation She looked beautiful and Rafael even looked super cool in his hat :-)








27th August

Today was a better :-)))) 

Rafael was very uncomfortable with the vas cath in his groin - he hated it!!!! He had to stay in bed, laying down all the time. Dom stayed at the hospital with him last night. 

Unfortunately, they were in the Possum Ward, which is for short stays after surgery. It doesn’t have a bed for the parents to sleep, just a chair that folds out and the room was tiny :-(

The decision that apheresis would start today wasn't made until 10am.

David the nurse who does the harvests already had the machine primed and ready to go. As Rafael only weighs 20kg, he does not have enough blood for them to be able to start the machine just using his. Therefore a unit of cross-matched blood was already run through.

The whole procedure was painless, except when the nurse had to touch the lines of the vas cath :-(





They pump his blood out at 20ml per minute, it's sent through a serious of tubes and centrifuges, the stem cells are separated and the blood is pumped back in.

It ended up going for 3 1/2 hours as they thought (hoped) that they could harvest all of his stem cells in one go, meaning we wouldn't have to do it all again tomorrow :-)



David was very happy with the bag of cells collected, he estimated ~ 4 million. The doctors were hoping for 3 million but expecting less, given the state of Rafael's bone marrow.

Rafa guessed 2.3 million ;-) 


We had to wait over 2 hours (fasting again!) while the cells were sent to the lab and counted. They do this by taking 1ml of the collected cells, counting the cells in that and then multiplying by the total collected.


By 4:30 we finally had an answer!!!

3.1 million precious stem cell harvested today and the vas cath could come out :-)))))))

Rafael got himself very worked up today when he found out that he would have to take an oral dose of Midazolam!! He refuses to take anything by mouth - argh!!! After speaking to the Dr, we convinced him to try Laughing Gas instead. That cheered him up :-)

However, when the nurses pulled the vas cath out - he wasn't laughing at all, just crying :-((( I wish he'd taken the Midaz, at least that stops you from remembering :-(

He had to wait for 4 hours so the nurses could keep an eye on the exit wound before he could go home. At least he could eat :-)

Right on 9 pm Rafael was discharged :-) 

I took Leo & Maggie in the car to pick him up and he was very surprised and very happy :-) 

26th August

Not a good day for Rafael (or me)

We arrived at RCH at 7:30am as requested and he had a special blood test (CD34).

Meanwhile, he had been fasting since last night.

He has to fast as he needs to have surgery to insert a vas catheter into his femoral vein prior to the apheresis (stem cell harvest).

By 10am, the result hadn't changed much since yesterday. Rafael's bone marrow is very damaged after years of treatment, and the "part" where stem cells live is now classed as fibroid and very unfriendly :-(

We have been hoping and praying and wishing for these stem cells to move - but they are "stuck".

Thankfully, one of the head doctors decided to go with the option of a very expensive drug that "pushes" stem cells out into the blood stream :-))))  Dr Michael had led us to believe the hospital would not pay for this ;-)

We waited in surgery from 10 - 11:30 .......

At 11:30, one of the Drs's told us that we had been bumped to the afternoon list, as they were too busy!! AKA - they need a lunch break!!

I was SOOO angry Rafael had not eaten and drank anything since last night!!!!

Long story short - I took him down to Kookaburra ward, and as his port was already accessed, I asked them to give him IV fluids to prevent dehydration Great for him, but not me! I was starving and nearly fainting by this time! I can't eat if Rafa can't ;-)

Rafael finally went into surgery at 2pm and the Dr called me at 3pm to say that the insertion went very well and there were no problems.


The nurse called me in at 3:30 to wait while Rafael tried to wake up.

He's had big problems in the past waking up from anesthesia, and the formula of meds they give him means that he takes a long time to wake up.


He woke up in a lot of pain and he was crying :-( He could have Panadol, but was refusing it :-((((

By 4pm he was asking for a cheeseburger and thick shake :-)))))))) This cheered him up a LOT!!!

"Yeah, I can eat now!!"
So, the new plan is for him to have the special drug tonight at 11pm, another injection of GCSF at 7am and start apheresis at 9am tomorrow!

Given the boost of this drug (Mozobil), we are hoping for millions of stem cells tomorrow!!!!!

FaceTime with Leo at home ;-)

25th August

An early start today, as we had to be at RCH by 7am. Rafael couldn't eat or drink anything until the blood test results were in and a decision had been made.

The third platelet transfusion was done while we waited.

Not today :-((((

The Dr said that the level in his blood is ‘not quite there’. So, no more fasting today :-)





Happy to be home getting cuddles from Leo
22nd August

Another platelet transfusion today.

The doctors are hoping to get his count above 100 prior to surgery to have a vas catheter inserted in his femoral vein, for the stem cell harvest.

Rafael never gets platelet counts anywhere near 100, so it will be interesting to see what 3 transfusions in 5 days do ;-)

He will have a special blood test on Monday morning to see if his stem cells are mobilising.

If yes, then he will start apherisis over 1 or 2 days, until they collect enough cells.






20th August

Not having a good day


19th August

Our Warrior lending his smile to a worthwhile cause

http://www.wyndham.starweekly.com.au/story/1808857/great-cycle-challenge-westbourne-teacher-rides-for-rafael/

After this photo was taken, we headed into RCH for 3 days of hydration and chemotherapy

16th August

After months of waiting Rafael’s dream came true today!!!

Mumma Kaz gave Leo a clean bill of health and he and Maggie arrived around lunchtime. Kaz also bought April Ann, Lily and granny along too

Unfortunately Gabriela wasn’t home as she had a snow excursion for school and it was the best day for Kaz to make the drive.




On our way to pick up Lela - with her baby!!




15th August

Excitement is building in our house!! I don't think Rafael will be able to sleep tonight

15th August

We finally had a chance to catch up on the last 8 months of Rafael’s “Beaded Journey”

It tells the story of Rafael’s journey through cancer treatment. Colourful beads symbolise medical and non-medical points along the path.

We had been waiting to get the string extended and that happened today.

8 months is a lot to catch up on!! Luckily I jot everything down in a notebook.

So, from Christmas Day 2013 until today, this is Rafael’s journey :-

89 x Needles/Finger Pricks

23 x Blood/Platelet Transfusions

80 x doses of chemotherapy

5 x “Other” medical

3 x Bone Marrow aspirates

6 x admissions to hospital

17 x clinic appointments with doctors

30 x Special Events/Days

12 x Tests/Scans

13 x Visitors


14th August

Rafael was not peeing enough for them to start his chemo, even after many hours of hyper hydration!! They ended up giving him a bolus to get things moving ;-)


Our friend Nicole (and Rafael's tutor) bought these divine cupcakes in!!!
1 dose of Cyclaphosphamide was given today and Rafael will need another 24 hrs of hydration after this.


Gorgeous Kathy visited too and Rafael ate her donuts for dinner!!! - as you do ;-)

13th August

Rafael was admitted today for pre chemo hyper hydration. This chemo can "stick" to the bladder and cause damage, so IV fluids are run at high doses to keep flushing it out, as well as another medicine (Mezna) to protect the bladder


Rafael was complaining of pain in his back yesterday and needed a heat pack :-( Today it seems ok :-) I spoke to Dr Michael and he said it would be due to the high doses of GCSF - it causes very strong flu like symptoms :-(

He has also been quite tired the last few weeks. His hemoglobin (red cells) didn't recover well after the last cycle :-( He has been borderline for a transfusion this last week. Dr Michael planned to give him one on Friday before he is discharged, but decided to bring it forward to tonight :-) Yeah for "red cordial"


Rafael is counting down the days until Leo comes home with us xxx

10th August

Throughout this journey, many people have come into our lives, and many have left.

Sometimes, someone "special" comes along - is it Karma? Is it meant to be? Will we be friends forever? Probably all of those

The Ambrus family from Geelong saw Rafael on Ch7 back in March and they sent 2 birthday cards. I never forgot their name, as their 14 year old son Jaiden wrote that he was also a cancer survivor!

We were very touched by their cards :-)

Some time later, Anna contacted me and asked if they could purchase some Rafael's Warriors wristbands, as they'd been following his journey.

When I told Anna that I knew who she was and that Rafael had indeed received their cards, she was very surprised that we remembered them Who could not remember another young boy that had his own struggle with cancer and survived!!!

Last week, Anna saw that we were at RCH and sent me a message to see if we could catch up.

It was an instant connection, cancer family to cancer family - they get it!!!!

After a L O N G wait to see Dr Michael, the "stars aligned" and we finally met the Ambrus family xxx


5th August

Rafa didn't enjoy his breakfast ;-)



We went to our favourite Café (The Waterstone Cafe) for a late breakfast before heading into RCH.

Of course, Dr Michael hasn’t spoken to the other doctors yet!! Now he’s waiting to see if we can get some stem cells and then decide on the path based on that.



2nd August

I haven’t wanted to write this since 17th July when Rafael had the GaTate scan at Peter Mac.

At first, Dom and I kept it to ourselves, and then we were waiting to hear the results of the whole gambit of scans and tests Rafael had the week before last.

We met with Dr Michael last Wednesday and the meeting went for over an hour.

Rafael’s PET scan showed that his disease was progressing (again!) and that the recent cycles of Irinotecan and Temozolomide were no longer effective.

He has many areas of “black” on the scan - all in his bones.

On our last Saturday in Brasil, Rafael was complaining a lot about pain in his left leg. So I wasn’t totally surprised when I saw the images. What did surprise me was that it’s his right leg full of cancer! I wonder if it was referred pain?

We urged for Rafael to have these recent cycles of chemo so that he was well enough to travel to and from Brasil, without being dependant on transfusions. To that purpose, it worked.

However, Neuroblastoma is truly a beast It just takes one cell to take off and spread and the rest just follow. As I’ve said many a time - it sucks and I H A T E it We all hate it!

So, as bleak as the news was from Peter Mac, Dr Michael was surprisingly upbeat!

Rafael is really well; he’s not in pain like he was last year!

His bone marrow and trephine show no signs of NB, which is fantastic (2nd test in a row). This time last year his marrow was packed with cancer! That means that the cycles of Irino/Temo he did last year were effective in helping to clear his marrow.

After fasting for a whole day before his kidney function test (grrr!!) the result came back well below what is allowable for any clinical trials (as expected after starving!!) This test will be re done.

After 7 months (actually - 4 years!) Rafael’s tumour was finally tested for the ALK mutation and he doesn’t have it. That’s a good thing. But there is a great medication for that if needed.

All of the scans showed that his primary tumour site (L adrenal gland) is still in remission - he’s never had a relapse there.

However, all of his metastatic sites are more active and intense, but there are no new spots!!

Therefore, the plan going forward is still on.

Those details are being talked about by Dr Michael, Prof Hicks and a doctor from Westmead in Sydney. They may ask for a peer review from Mark Gaze and Kate Matthay (2 top NB doctors UK/USA)

We are still planning for MIBG therapy, but the dose is what is being discussed. 1 X High Dose with stem cell support or 3 X Lower (High) Dose and not necessarily needing stem cell support.

Rafael still has 2 bags of stem cells frozen since 2008 when he failed frontline treatment.

Our aim next week is to give him a single dose of the chemo Cyclophosphamide and daily injections of 2 x the dose GCSF to get his stem cells moving and then attempt to harvest around Day 14. Sounds easy right?? Please all pray that those stem cells start moving!! He needs them xxx


We are meeting Dr Michael again next Wednesday and really hope that he’s spoken to the other doctors before then!!!!



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