26th October
Today was a special day for Rafael and us ;-)
Day Oncology is closed on the weekend and we had to go to the ward. They usually keep us in a treatment room, which is not very comfortable. But thankfully today they had a spare room. By the time the cross match was done and Rafael's port was accessed, we needed a good seat/lounge/bed ;-)
Matt Le Nevez wanted to visit Rafael before he went back to the USA. I mentioned that we'd be at RCH all day and he came in for a visit!!!!!
OMG - how amazing is he?? He bought Rafa a Melbourne Victory t-shirt and mini soccer ball and stayed an 1 1/2 in the room with us!! We talked about acting and Hollywood and Neuroblastoma and treatments and time just flew!!
Usually when Rafael has a blood transfusion, he has 1 set of observations (blood pressure, temp, pulse etc) just after it starts and 1 before it ends. Well - today, his room was a non stop revolving door - I think the nurses were taking it in turn to come and see that "Dr Patrick" really was alive!!! I think they did obs every 1/2 hr ;-) xxx
25th October
Dom drove Rafael to school this morning and when they got there, Rafael said "I think I need a blood transfusion"!! Dom said he did look tired and pale :-(
I picked him up early and we went to Werribee hospital for them to do a blood test.
About 2 hours later I called RCH to let them know and the result was back, Hb = 72 - blood transfusion tomorrow :-(
This is not the first time that Rafael has been spot on with his body's needs. It really surprises me :-)
23rd October
Rafael had a check up and meeting with Dr Michael today.
He was very happy with Rafael's progress and lack of pain :-) I am still using the stroller to wheel Rafael around the hospital as he's not strong enough to walk long distances.
Dr Michael wasn't happy when I told him about stopping the antibiotics, so next cycle he'll be on it again :-(
Michael presented Rafael's case to the neuroblastoma conference in Paris. He did not give us all of the replies, but the consensus was "Yes, this is a very difficult case"!!!
One of the Dr's, Ruth Laderstein from Austria caught up with Michael later, after she'd thought about Rafael's situation and suggested that maybe trying a haply identical stem cell transplant might be an option.
This is something we had already discussed with Michael. Now it's back on the table ;-)
Rafael's haemoglobin is holding up at 87 :-)
18th October
Today was a special day for Rafael and us ;-)
Day Oncology is closed on the weekend and we had to go to the ward. They usually keep us in a treatment room, which is not very comfortable. But thankfully today they had a spare room. By the time the cross match was done and Rafael's port was accessed, we needed a good seat/lounge/bed ;-)
Matt Le Nevez wanted to visit Rafael before he went back to the USA. I mentioned that we'd be at RCH all day and he came in for a visit!!!!!
OMG - how amazing is he?? He bought Rafa a Melbourne Victory t-shirt and mini soccer ball and stayed an 1 1/2 in the room with us!! We talked about acting and Hollywood and Neuroblastoma and treatments and time just flew!!
Usually when Rafael has a blood transfusion, he has 1 set of observations (blood pressure, temp, pulse etc) just after it starts and 1 before it ends. Well - today, his room was a non stop revolving door - I think the nurses were taking it in turn to come and see that "Dr Patrick" really was alive!!! I think they did obs every 1/2 hr ;-) xxx
25th October
Dom drove Rafael to school this morning and when they got there, Rafael said "I think I need a blood transfusion"!! Dom said he did look tired and pale :-(
I picked him up early and we went to Werribee hospital for them to do a blood test.
About 2 hours later I called RCH to let them know and the result was back, Hb = 72 - blood transfusion tomorrow :-(
This is not the first time that Rafael has been spot on with his body's needs. It really surprises me :-)
23rd October
Rafael had a check up and meeting with Dr Michael today.
He was very happy with Rafael's progress and lack of pain :-) I am still using the stroller to wheel Rafael around the hospital as he's not strong enough to walk long distances.
Dr Michael wasn't happy when I told him about stopping the antibiotics, so next cycle he'll be on it again :-(
Michael presented Rafael's case to the neuroblastoma conference in Paris. He did not give us all of the replies, but the consensus was "Yes, this is a very difficult case"!!!
One of the Dr's, Ruth Laderstein from Austria caught up with Michael later, after she'd thought about Rafael's situation and suggested that maybe trying a haply identical stem cell transplant might be an option.
This is something we had already discussed with Michael. Now it's back on the table ;-)
Rafael's haemoglobin is holding up at 87 :-)
18th October
Last day :-)
The traffic was a
nightmare getting in and Rafael kept asking me to turn the air con higher. As
soon as I parked the car, he started vomiting in the back :-( Yes, we have sick bags in the car – but they
were in the boot!!!
After that he only
felt like eating a strawberry chuppa chup – nothing else all day :-(
Day Oncology was crazy
busy and we couldn’t even get a seat with a TV :-( So Rafael just watched a movie on his iPad. It
was very noisy and loud today!
We had our first
visitor for the week :-) A Brazilian
girl we hadn’t met, but who knew about Rafa through another friend came in :-) She made some Brazilian sweetes for Rafa too :-) As it turns out, it really is a small world as
my sister in law was her teacher at University in Brasilia!!
17th
October
Rafael has to take so
many medications and the timing between each is very specific.
The week has gone to
plan, so far ;-)
Wake him up at 8am
Give 2 x Oxycodone
tablets.
Breakfast
Oral antibiotic that
he hates the taste of! (Crushed up with grape juice)
Wait 2 hours, and then
give 4 x oral chemo.
Wait 1 hour before food
or IV chemo can commence.
Dinner
Oral antibiotic that
he hates the taste of (again!!)
1 x oxycodone
Rafael has been eating
a banana for breakfast as Dr Michael said his potassium was a little low.
Today when I gave him
the “oral antibiotic that he hates the taste of” he vomited straight away :-( All over my bed and the carpet :-( Mushed banana - joy!!
I noticed that the 2
oxycodone’s had come up too so I called the oncology pharmacy to find out if I
could give it again. As they are slow release, it’s too hard to know how much
dose he’d already gotten, so we agreed not to repeat the tablets.
I hope that Rafael
doesn’t get any breakthrough pain today :-( Have taken the oral oxycodone with me today just in case.
I mentioned to nurse
Theresa about his vomiting and how much he hates the taste. She didn’t know he
was taking this medicine and she couldn’t understand why?? She said to leave it
with her and she’d speak to pharmacy.
This medicine is a prophylactic
to prevent diarrhoea that can be caused by Irinotecan. Since Rafael hasn’t had
any with either of the rounds, they said we could stop giving it to him for now
and just keep and eye on him.
He also takes another
medicine in between chemo rounds to stop him getting constipated from the
Oxycodone – which he also hates the taste of!
We’ll need to start
him on that one now, since he’s stopped the other – argh!!
16th
October
Day 3 – all good :-) Except that Lela still has her cold :-( I asked Nanna to come over and watch her whilst we were at the hospital - more fun for her!
15th
October
I hit the ground
running today when I landed into Melbourne – thank God for coffee!!
The flight was 15
hours, I was home by 10:30 am, showered, changed and out the door with Rafael
again by 11:30 am!!!
All went smoothly and
we were in and out in about 1 ½ hrs :-)
I even managed to have
a sleep when I got home at 2:30 pm :-)
14th
October
Round 3 is a go! Dom
had to put the “Project Manager” hat on today as I am in LA ;-)
Unfortunately,
Gabriela woke up with a head cold and couldn’t go to school, so he took her
into the hospital with him.
First they had to do
the usual finger prick blood test and then wait an hour to find out if the
counts were high enough to start.
Once the Dr agreed,
then Rafael needed to take the oral chemo – Temozolamide, which has to be at
least 1 hour before the IV chemo – Irintotecan.
During that gap, the
nurse accessed Rafael’s port and after 1 hour – he could finally eat, as he’d
had nothing since breakfast :-(
10th October
Once again, we did the
cross match for the blood yesterday afternoon as it saves us time today :-)
I was so tired :-( Thankfully we managed to get one of the quiet
rooms with a bed and I even had a quick 10 minute power nap ;-)
9th October
Rafael and the pugs
featured in the South Gippsland newspaper today ;-)
Blood test and clinic
again today at RCH.
For the first time ever, Rafael has cracked the 21 kg mark :-) Exactly 21 kg today ;-)
For the first time ever, Rafael has cracked the 21 kg mark :-) Exactly 21 kg today ;-)
I thought that Rafa’s
counts would be ok, but no, they were very low :-(
Another blood
transfusion tomorrow :-(
Dr Michael is heading
off to the SIOPEN conference next week. Rafael is due to start round 3 of chemo
on Monday, but if his counts are still low (especially platelets) then we’ll
have to wait another week :-(
They will check his
counts on Monday morning and the resident Dr will make a decision.
We asked Dr Michael to
delay this round of chemo by 1 week (28 days instead of 21) so that Rafael
could go to school last week, and also so that the following 21-day cycles
don’t interfere with other school events he has this term ;-)
8th October
Flew up to Sydney
today to officially celebrate my 20 years of service :-)
7th October
Rafael and Gabriela
are both back at school today :-) Happy to be seeing their friends again :-)
2nd October
The article was
published in today’s Herald Sun :-)
