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 :-)
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.
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!!!!
