30th November 2013
We were all up bright and early today to get to RCH by 9am so that chemo could be done as early as possible :-)
As soon as it was finished we drove to Sandown for the annual Challenge Xmas party :-) Both Rafa & Lela got to go for a ride in DeLorean's!!! I couldn't work out how to open the door ;-)
We had a fun day, especially catching up with other Challenge families :-)
After that, we went to a friends for a BBQ and they have a pool. It wasn't a hot day, but the sun was out and the children all played for a long time in the pool :-)
29th November
We were all up bright and early today to get to RCH by 9am so that chemo could be done as early as possible :-)
As soon as it was finished we drove to Sandown for the annual Challenge Xmas party :-) Both Rafa & Lela got to go for a ride in DeLorean's!!! I couldn't work out how to open the door ;-)
We had a fun day, especially catching up with other Challenge families :-)
After that, we went to a friends for a BBQ and they have a pool. It wasn't a hot day, but the sun was out and the children all played for a long time in the pool :-)
29th November
It’s a Minecraft kind
of week (year!) Another friend brought her children in who both love MC and
they sat and played with Rafael whilst he had chemo :-) The 1 ½ went by very
quickly!!!
Received another email
from Rod today. I get it that he really wants to try more PRRT, but our hands
are tied and we have to go with Dr Michael’s plans until we know if we can use Rafael’s
stem cells. Rod is just presuming we can and I’m trying to make him understand
that Michael is not against it, but if we are going to use a “big gun” then we
really need to consider all of the options and that might include adding a
chemotherapy into the mix.
28th November
Gabriela was envious
that Rafael’s friend Kane got to take a day off school, so she begged me if she
could come to the hospital too! ;-)
It was very quiet –
they both sat watching Minecraft videos on their iPads and I read my book. I
don’t think anyone spoke the whole time!
Our friend brought her
daughter in to visit too and she loves Minecraft as well! They were running
late, so we met them downstairs. We had a coffee and the 3 children talked
Minecraft the whole time! :-)
27th November
Because we started a
day late, it now means we have to do to the ward on Saturday morning for 1 ½
hrs to finish Day 5. We have the Challenge Xmas party that day and we really
like to get there early. :-(
I thought that
chemotherapy could be brought forward by 2 hours a day, but it’s actually 2
hours for the cycle. That meant that we’d only be able to start as early as 9
am on Saturday, 1 hour later than I hoped.
Theresa spoke to Dr
Michael and he said bringing it forward an extra hour would be ok. Therefore,
she wants us to come a bit earlier each day until then, which means driving in
peak hour traffic!
We had our scheduled
45 minute meeting with Dr Michael at 2 pm and Rafael finished chemo at 12:30.
It meant us hanging round for a while, but it was ok. Rafael has a new passion
– chicken teriyaki! Except he only eats the chicken and leaves the rest. Oh
well, it’s only $8.50, probably McDonalds costs almost that much!
On Monday when I saw
Michael, he told me that he had the GaTATE report but not the mIBG one. I wrote
to Dr Tim (as Rod is away) and asked him to forward it to Michael before our
meeting today. As it turns out, he still doesn’t have. But, over the last 2
days, Rod has been emailing us and he went into the office today (he’s on
annual leave) to review both of Rafael’s scans and then he called Michael
personally this morning!
Rod is still reporting
it as minor response. I had to remind him that Rafael hasn’t had any aggressive
therapy yet and it was only the last cycle that Irinotecan was put up to the
MTD (maximum tolerated dose).
Rod really wants to
try to get Michael to agree to try using a combination of Lutetium and mIBG
therapy at a high dose with stem cell support.
Michael is not against
it, however, he really wants to try other options first. He brings his point
across quite validly. He thinks the Peter Mac option is not curative and he is
really trying to cure Rafael or at least give him a much better chance of
getting on to the anti body trial or some other trial.
The BMA’s showed that
1 side is clear and the other still has NB cells.
The surprise result
was Rafael’s GFR – it’s up to 82!!! It hasn’t been that high in years. Drinking
all that water on Sunday helped. :-)
At that level, it
means he qualifies for high dose chemo, as well as other trials.
We talked about many
options today and nothing is set.
We are going to a test
in a couple of weeks to see if Rafael is producing stem cells. If so, we may be
able to harvest more. Also, they need to check the ones he has frozen (2 bags)
to check their viability and there’s 1 other test for them to do – it’s to
check whether the stem cell swill be able to graft to Rafael’s “unhospitable”
marrow.
So, no new plan is set
yet. We seem to repeat a lot of conversations with Michael!
However, the next
cycle of Irino/Temo will be a “proper” cycle, as per the clinical trial. This
means he will have oral Temozolomide (100mg) on Days 1- 5 and IV Irinotecan
(50mg) on Days 1 – 5 & Days 8 -12. The next cycle will start on 16th
December; therefore it means we will have to do to the ward on Christmas Day
for 1 ½ hrs for the chemo infusion. It’s not so bad, as we celebrate on
Christmas Eve anyway, we’ll just have to let Santa know what time we need to
leave.
26th November
Chemo started with no
problems. As Rafael’s port was already accessed from yesterday, it’s just a
matter of getting in to Day Oncology, having the 1 hour infusion and ½ hr
flush. Rafael’s best friend Kane took a day off school to come in and keep
Rafael company. Then a couple of my friends from work came in too, to drop off
some food and say Hi. The 1 ½ hrs passed very quickly. :-)
Kane came back to our
house afterwards and they continued their Minecraft passion!
25th November
Had to be at RCH by 10
am for the GFR tracer to be injected. Brooke did a great job getting a canula
in Rafael’s arm 1st go!
We also asked her to
take some blood for the pre chemo check up. Due to start this afternoon after
the blood tests for the GFR were taken.
We went up to Day
Oncology to wait. After the GFR tracer, they need to take blood at 1 ½ hrs and
3 hrs.
Thankfully I spoke to
Theresa about getting the chemo organised. I need to give him the Temozolmide
capsules at least 1 hr before the Irinotecan can start. And it usually takes a
while for pharmacy to arrange that!
Theresa asked which
doctor we usually see pre chemo? Actually, no one in particular, usually just
the nurse coordinator check the blood counts and then gets one of the fellows
to sign off on it.
Anyway, Michael was
there and she grabbed him! He came in to review Rafael. He thought that he had
written the chemo order already, but no one could find it. Long story, he had –
but for next week!
It means that we can’t
start until tomorrow, as pharmacy didn’t have the Irinotecan. At least they
were able to give me the capsules to take home so that I can give to Rafael in
the morning. :-(
24th November
Today we had a “voucherful”
day. :-) :-) :-)
First off, we went to
lunch at Rockpool Bar & Grill. I had a $100 voucher and 2 of my friends
from work donated their own vouchers to us, so we had $300 in total!
Rafael order a wagyu
skirt steak and ate it all!!!
Gabriela didn’t want
steak, so she ordered wagyu bolognaise (ssshhhh, she doesn’t get the irony of
that!)
Dom and I both had
fillet steaks and side orders of vegetables. The meal was divine, mouth
watering and above expectations!
We also let the
children have anything they wanted for dessert and Rafael was lucky because
they did allow ice cream by the scoop!
We took a bottle of
water with us and kept getting Rafael to drink it throughout the day as he’s
having his kidney test tomorrow and we wanted to make sure he’s well hydrated.
The reservations
manager at Rockpool knew that we were going to the cinema after lunch. Before
we left, the waitress gave us a large bag that had many individual bags of all
they different types of petit fours they sell!
Next we headed to the
Gold Class cinema to watch Catching Fire. We have been looking forward to
seeing it, but no one more than Gabriela! She has read the books over and over.
The staff at Williamstown Grammar had very generously given us $200 vouchers to
use. As we’d just eaten lunch, we didn’t need to order any food. Instead we had
a glass of wine and a coffee!
In total, our
wonderful day out cost us $47!!!!!!!!!
22nd November
Yeah – Rafael made it
to school today! Rafael’s teacher is away for the rest of the term as she has
been very ill and was admitted to hospital. It will be sad to finish our
time at Williamstown Grammar without her there :-( She has looked after Rafael so
well this year, just like he’s her own child :-) The good news is that she will be
teaching at the main campus next year, so Rafael will still get to see her!!
Rafael's hair is sticking up on the top, if I put some gel in it, he could be trendy ;-)
Rafael's hair is sticking up on the top, if I put some gel in it, he could be trendy ;-)
21st November
At RCH today for Bone
Marrow Aspirates. They do it on both sides of his back and they also take some
of the trephine (bony part of marrow).
I spoke to the
anaesthetist before about changing his anaesthetic now that he’s getting a bit
older. She agreed and they left out the morphine today.
It took a while for
them to call me into recovery, but that’s normal as it usually takes him a
while to wake up.
The nurse and I kept
trying to get him to wake up, but he’d open his eyes and then just get comfy
again and nod off.
A couple of time the
nurse had to call a Dr because Rafael’s blood pressure kept dropping too low.
At one stage they were talking about putting in an IV line and giving a bolus
of fluids. The nurse and I managed to get Rafael to sit up a bit and drink
water through a straw and slowly his blood pressure came up. By the time we
left, it was still low, but in the low range of acceptable.
A couple of my friends
came by to drop off some food and whilst Rafael was recovering we were able to
have a nice chat.
20th November
At Peter Mac again
today, for the mIBG scan. This one takes a bit longer yesterday ~ 1 ½ hours. Rafael
has to lie very still throughout the scan and he does. He copes very well with
all this stuff going on!
Managed to have a chat
with Dr Andrew, who is a Fellow. I asked him to show me the gaTATE scan and he
did. The report states “minor response” but from what I saw, I’d say partial
response (PR). Yes, it’s still black and there is lots of cancer, but there
were places where the black was greyer. I just didn’t want to see anything that
was worse, and this wasn’t, it was a bit better.
19th November
Scanxiety in full
force!! :-( :-( :-(
At Peter Mac today for GaTATE scan and mIBG tracer injection.
Dom had to go to
Sydney today and won’t be back until tomorrow night, so it’s just Rafael and I :-(
Prof Hicks is away
this week, so not sure if we’ll get the result.
We are not expecting
bad news, as clinically, Rafael is doing so well, compared to how he was a few
months ago.
Jessy was there and
she accessed Rafael’s port. We decided to leave it in until Thursday as they
can use it at RCH for the anaesthesia.
We briefly saw Dr Tim
after the scan, but he’s a scaredy cat and never wants to give us bad news. He
just said, “Yes, there is still stuff there” !!!
We went up to Nuclear
Medicine to have the tracer injected and found out that it is Val’s last week.
She has also been there throughout our journey and we’ll miss her.
18th November
Rafael was able to go
to school today :-)
I put out call on
Facebook for help, asking local families to prepare some meals for us. I
received many replies and have meals being delivered for the rest of the week
and one of our friends even called our local pizza shop and created a credit
for us! :-) :-)
17th November
I arrived home from LA
just after Gabriela was dropped off at home. She/we are so proud – she
completed 73 laps and raised $450 for the Cancer Council :-) :-)
16th November
Dom took Rafael in to the
ward to get his blood count done and they did a cross match at the same time.
Rafael’s best friend Kane said he wanted to go too. We warned him that he’d be
bored, but he shrugged and said, “if I’m with Rafael I don’t mind”. Nurse Jessy
was waiting for them to get there and the blood results came back quickly. Yep
– Rafa was right. So the 3 boys spent the day there.
Dom had dropped Gabriela
off at a friend’s house as they are doing the Relay for Life tonight.
15th November
I went to LA yesterday.
This morning when Dom took Rafael to school, he said he thinks he needs a transfusion :-( :-( I feel so far away when these things happen :-(
13th November
Checked blood counts
and then had an appointment with Dr Michael.
Before the next round
of chemo we are going to get all of the scans repeated as well as both bone
marrow/trephine aspirates and GFR (kidney function).
He, like us, is very
happy with Rafael’s lack of pain and almost being back to his normal self.
He’s
still not kicking the soccer ball around the house – that is our benchmark.
8th November
Yeah – last day of
chemo :-)
7th November
Day 4 of chemo
We found out this
morning that we were successful in the first round of purchasing tickets to
next years World Cup in Brasil!!! We are so excited. 6 games in Brasilia + the
quarterfinal :-) :-) :-)
Today was Lisa’s last
day of work at Day Oncology. She started about 1 week before Rafael was
diagnosed and has been there throughout our journey. It won’t be the same
without her :-(
6th November
Just Rafael and I
today – day 3 of chemo
5th November
Today was the Melbourne
Cup holiday and Dom & Lela did the hosp run for me. Day Oncology was closed
so they went to the ward. It was very quick, in and out in 1 ½ hours.
4th
November
Next round of Chemo
started today. We went in early to get the blood test done and then had to wait
about 2 ½ hours for a doctor to sign off on it – grrr!!!
