30th
November
4th Day of chemo, back at RCH. As it is
Sunday, we had to go the ward and it took forever to get a nurse to look after
Rafael :-9
Just
home from chemo, Rafa with his best buddy Leo and his early Christmas present
Leo features a few times and Rafael's photo with Miss Granny Giggles is
featured too
28th November
A day of indecision! Peter Mac really want to
discharge Rafael today, but his radiation level is too high. To compound this,
he hasn’t been to the toilet yet and is possibly holding too much radiation
inside. In the end they decided to give him a laxative. Well, he wasn’t happy
about that!!!! He cried and refused to take the 10 mls!!! It took about ½ hour
and not until we told him was Lactulose and he said, “Oh, I’ve had that before,
why didn’t you say!”
Finally after he went to the toilet, his level was
down to 22. This meant he could go home, but Gabriela couldn’t stay.
Before we left Peter Mac, finally, after many weeks and M A N Y emails - we
managed to get Dr Michael and Prof Rod in the same room last night to discuss
the next steps in Rafael's treatment
Here
they are comparing hair
Dr M is
quite impressed by Rafael's response so far, but still wants to use stem cell
support in case he gets an infection. At the moment, that is booked for 11th
Dec xxx
Gabriela & Rafael’s school held their speech
night tonight and it was a real juggle for us to get there, but we did!
We managed to see Gabriela graduate from Junior
School and accept her House trophy.
Our friend Mark picked up Rafael from Peter Mac and
drove him to our house where my Mum was waiting. When we got home from speech night,
we had to send Gabriela to Nanna’s to sleep over so as not to expose her to
Rafael’s radiation.
27th
November
I had a day off today and Dom stayed with Rafael and
worked from the room. This week, from nowhere – Rafael has started drawing!!
He’s filling up a book with Pokémon drawings and they are very good :-0
We still
don't know if Rafael will be allowed to leave tomorrow
They
thought they'd have a clear idea yesterday, but when they measured his
radiation, it was 88, much higher than expected!
Today it
is down to 51
It needs
to be 12 or less to leave
Rafael
is doing fine, no side affects at all yet. We are trying to get him to drink a
lot more water, so that he can flush out the radiation
26th November
We left Peter Mac at 7:30am and drove to RCH for
Rafael to have his chemotherapy.
We were back and ready for I131 MIBG by 10 am :-)
Before that he needed a SPECT/CT to evaluate the Lutetium uptake.
There was a hiccup as the blood test taken at RCH was
wrong and needed to be re done. Mark was stressing as that could take up to 2
hours and the MIBG was already to go!
The nurse said “Don’t worry, I’ll take it to the lab”
Within 10 minutes she was back with a result!! No one could believe that she’d
been able to get them to run the test so fast!!
Here is a
"simple" science lesson as explained By Dr Michael (from Peter Mac)
The 2
different types of radiation that Rafael had injected work the same
They
emit both Beta & Gamma rays. The Beta rays work quickly, attacking the
cancer cells and "explode" (like an atomic bomb) with a 1 mm radius.
So pretty much, they only kill the cancer cells and sometimes - healthy cells
nearby.
The
Gamma rays that are emitted are what take longer to decay and Rafael's own body
has absorbed these. That's why he has to stay so long in hospital, until his
own emissions are deemed safe.
25th
November
First thing this morning we were at RCH for the chemo
infusion.
Then we went across to Peter Mac to be admitted for the first day of radionuclide therapy.
Today they are using 177Lu, which Rafael has had before, except it’s a higher dose this time.
This is the 6th consecutive year that
Rafael has received treatment at Peter Mac – a miracle really !
After the Lutate they ran an amino acid infusion for 4
hours to protect his kidneys.
Rafael had no problems at all. In fact he even
started “glowing”!!!
24th November
Everything is set in place, was touch and go whether
this plan could be sorted, but it is and starts today!
Rafael will have 5 days of chemotherapy – Topotecan,
which will be split as he needs to do at RCH as Peter Mac don’t have a paed.
Nurse.
Today he had both blood and platelet transfusions to
hold him over as well as Day 1 of chemo.
21st November
Today was Rafael’s last day of school. They only have
2 weeks left and as he’ll be in treatment all next week, we thought it best to
finish off today. His class threw a surprise party for him.
20th November
Surprise
school pick up visit
19th
November
WE HAVE
A PLAN !!!!!! It's still being finalized.
The good
news is that neither Dr Michael, nor Peter Mac are giving up on Rafael, despite
what the rest of the team at RCH are saying!!!
Rafael
will have a triple whammy next week
5 days
of Topotecan - given IV at RCH
On
Tuesday, he will have 177Lu (Lutetium Peptide Receptor Therapy) and be admitted
to Peter Mac until his radiation level is deemed safe.
On
Wednesday he will have I131 MIBG therapy
The
logistics of how the chemo can be administered across 2 hospitals is still
being discussed
Rafael
will have an "automatic" blood transfusion on Monday, to top him up
before the treatment. (Yesterday his count was at transfusion level but we held
off).
These
treatments will really knock his blood counts and he is expected to need many
transfusions in the next few weeks, as well as GCSF needles every day to help
his white cell count. We are hoping that his own stem cells won't be needed at
this stage and with the therapy clearing his bone marrow disease; his body
starts to produce enough cells
We are
so happy with this plan! The next step is to repeat the doses again in a few
weeks
Rafael
will be go through a lot, but we know that we have to do what is needed to get
our Warrior back to a state that can cope with "normal" treatment
Rafael
made it to school this week, even though his counts were low. We are glad we
sent him, as it looks like this Friday will be his last day in Year 4 One of
the Mum's is trying to organise a surprise class party/farewell for him xxx
18th
November
Clinic with Dr Michael and he said he didn’t have a
report yet from Peter Mac – don’t know why, as they send the same day!
Anyway, I managed to get Dr Tim on the phone and he
spoke to Dr Michael
14th November
Rafael's
Make A Wish was meant to be next Wednesday night and it has been cancelled. He
was meant to meet Pele, the great Brasilian soccer player, while he was in
Melbourne for 1 day only.
Pele was
admitted to hospital with kidney stones. They are trying to reschedule the tour
for next year We hope that Pele makes a full and speedy recovery!
Poor
Rafa - he was SO excited to be meeting his idol
He had a GaTate scan at Peter Mac today. This is the
scan he usually has and we trust it more than MIBG to give a clear indication
of Rafael’s disease.
He has been in so much pain since Saturday, that we
are not expecting anything but bad news.
Prof Hicks is away, so we met with Dr Tim afterwards
instead. He discussed with us the
options available at Peter Mac, since Sydney is no longer an option. Poor Tim,
he still has no voice and is about to undergo major surgery himself to try to
fix it :-(
13th November
As we
expected, Rafael’s scans and tests so far this week have showed that his
disease has progressed even further
We had a
lengthy conversation with Dr Michael last night, and there are very few avenues
for us to pursue now.
The most
disturbing is that his bone marrow and trephine (boney part) are once again
full of disease!! It took us many months last year and early this year to
finally clear his marrow disease!!
We knew
from his scans in July that his disease was progressing
What has
been done since then?? NOTHING!! He’s had a few cycles of chemo that were known
to be ineffective, whilst waiting on the “Holy Grail” of treatments in Sydney.
Getting that treatment approved (not) has taken from May -> November.
In that
time, Neuroblastoma, which is a sh*t of a disease, has been able to spread and
multiply
The mIBG
scan yesterday showed that he is back to where he was last year. In fact, there
is one spot on his neck that has the docs very worried as it looks like it’s
moved from the bone to soft tissue and his spinal cord could be at risk!!!
We
started him back on Oxycodone and Steroids today to help with is pain. Until
today, we've had to carry him everywhere, yet tonight, after only a few doses,
he was already kicking the soccer ball around again
No one
besides Dr Michael and us has fought for Rafael this last year. The rest of the
oncologists at RCH wrote him off last year. There was a meeting to discuss Rafa
yesterday and the term “collective negativism” was used to summarise it!!
Tomorrow
Rafael will have a very specific PET scan at Peter Mac. Prof Hicks is overseas
and we knew that. Today we spoke to Dr Tim, who we will see tomorrow and he
said that Peter Mac has not given up on Rafael!! They do have a plan in place,
but it seems RCH still has to approve it!!!
As you
can imagine, Dom & I are beside ourselves! We cannot sleep, think, and be
normal what is normal anymore??? We have been Rafael’s advocates and
"Project Managers" for 6+ years. My head is constantly spinning,
writing emails, waiting for doctors to reply and researching other options.
12th
November
MIBG scan today, it takes about 1 ½ hours and Rafael
has to lie very still.
11th
November
Today
was Day 2 of 4 of scan and test week - scanxiety is in overdrive!!!
We met
with Dr Michael this afternoon as Rafael is in so much pain and unable to walk
very far His thinking is that it's not cancer, as all of Rafael's usual sites
aren't causing pain
His scan
tomorrow will give us a better idea.
Today he had the MIBG injection for the scan
tomorrow.
He still
has less than 1.0 neutrophils and that is a worry No school still - it's been 3
weeks tomorrow since he's been at school
10th
November
A week of tests ahead.
Today Rafael & I had to be at RCH very early for
him to have bone marrow aspirates.
He woke up well in recover, albeit a bit slow.
6th
November
We
talked a lot about the risk of taking Rafael to Sydney.
If he
gets a fever, we'd have to take him to hospital and then he'd be stuck there until
his neutrophils are greater than 1.0 Given how his counts have been, that could
take a long time
Putting
him on a plane with 100 other people isn't a good idea
So we've
decided to keep him home and hopefully his counts start to rise soon. He really
can't get sick now, not when treatment is about to start
So it
looks like it'll be just me going to Sydney
5th
November
Blood test and clinic appointment with Dr Michael to
discuss the ever-evolving P L A N!!!
Argh!
Another long day of discussions with doctors and meetings
My
stress level is so high
"The
Plan" is going ahead, but it's taking time - too long!!!
Lots
more emailing and pestering ahead for me over the next few days. Rafael will
also have a new set of scans at Peter Mac as soon as they can fit him in.
Scanxiety is the perfect word - do I really want to see how much it's
progressed???
My own
plan was to send Rafael back to school tomorrow. He's already been home for 2
weeks because of the virus he caught AT school - ggrrrrr!! However, we were
once again shocked today to see how low his blood counts were He just can't
knock this virus Having nearly no neutrophils means that his body cannot fight
infections. It's just much safer to keep him at home!!! Why do parents send
their kids to school sick?
The good
news is that his hemoglobin is holding - above 100!!
Rafael
will be back at RCH on Monday morning for another Bone Marrow/Trephine aspirate
He has a general anesthetic for those. Basically they get a small device, like
an apple corer and dig into the bone of both his hips and take out a core They
then test both the marrow (bloody part) and the trephine (boney part) for NB
cells. Cruel and painful I've lost count of how many of these he's had over the
years
Even
though Rafael's immune system is low, we are still planning on going to Sydney
this weekend to attend the very first Neuroblastoma Australia family
conference. I can't wait to hear what our docs have to say :-)
Rafael
was very excited when I told him the hotel had a pool This will be his 3rd time
in Sydney and Lela's 1st
