30th July
Last month I managed to take Rafael to school for 1 period so that he could participate in the school photos.
He even had a hair "trim" (read: tidy up the mess)!!
He's missed out on the last 2 years photos and we really wanted a new one!!
Love it :-))))
28th July
Rafael made it to 5 days without needing a platelet transfusion!! His level today was <10 and if we'd tested yesterday, it probably would have been the same ;-)
Thankfully he didn't have any big bleeds, just a bit from his gums when he brushed his teeth and was able to hold out until today, saving us and extra trip to RCH
We met with Dr Michael afterwards. Rafael's future treatment is now in the hands of the Ethics Committee. A meeting is being scheduled to discuss Rafael having a type of Bone Marrow Transplant called a Haplo Identical. The donor is from one of the parents. They have been using it at RCH for Leukaemia patients, but never for Neuroblastoma. Hence the ethics committee requirement!! Fingers and toes crossed!!!
He had a wonderful, friend filled weekend
He went to a sleep over party at his friends house, it was just around the corner, and although he fell asleep early - declared it the "most fun I've had in ages!”
On Sunday another friend came to visit. Even though Rafael was very tired from the party, they happily sat on the sofa and chatted and played with the pugs
22nd July
Rafael is obviously feeling much better
He went to his favourite cafe for a pizza lunch and managed to squeeze in a bowl of ice cream too :-)
21st July
Rafael is home :-)
Due to his low white cell count, the doctors were being super cautious and kept him in for one more night
He had another chest X-ray yesterday and all signs and symptoms are of a viral infection - he's still coughing a lot
He had another platelet transfusion yesterday. As expected, the Lutetium is knocking his counts
He has to take another medicine to try to avoid a fungal infection. The longer a person has no white cells, the higher their risk of infection increases
20th July
Rafael is still inpatient, but he is much better and still fever free
He even has 0.06 neutrophils today! I know, that's a tiny, tiny amount but we'll take it
The doctors are being super cautious and keeping him in for one more night.
He had another chest X-ray today. All signs and symptoms are of a viral infection - he's still coughing a lot
He needed another platelet transfusion today
As expected, the Lutetium is knocking his counts
He's developed a banana craving ;-)
19th July
Feeling better - fever free and hoping to go home in the next day or 2
18th July
Rafael is inpatient again :-(
Yesterday afternoon he spike a 39.7C temperature and that meant that we had to take him straight to ED. At least he gets a "go straight to the front of the queue" card
When we arrived, his heart rate was very high and his blood pressure very low
He also had blood in his urine
We spent 10 hours in ED waiting for a bed on a ward
In that time, they gave him 3 bolus' of fluid to bring his BP up as well as a platelet transfusion.
We finally went to a ward at 3:30 am and he had a blood transfusion and another one today. I think we finally got to "sleep" around 4 am
Since then, he has been having fluids at 100 ml/hr. Consequently he is very puffy now! He asked me to take a photo so that he could see what he looked like
At one stage this morning his BP dropped even further and they nearly called the M E T team
Thankfully when he rolled onto his back it picked up a bit
We were moved to Kookaburra ward later as the nurse to patient ratio is lower as they felt he needed more nursing care in case the BP didn't improve.
Gabriela & Dom came in the afternoon and he did perk up a lot, he even got out of bed and sat on the sofa for a bit
He tried to eat some lunch, was enjoying it and then coughed a lot and that made him vomit
At least he just continued on and ate the other half ;-)
16th July
Rafael managed to walk into the hospital yesterday without me needing to use the "vintage stroller" that he no longer fits into ;-)
He seems a little better :-)
He told me that it's not every day, but maybe every second day that he's feeling less pain :-(
He received a huge dose of radiation last week and it's really taken it's toll.
Hopefully he can turn a corner soon!!
Rafael's counts weren't great
Unexpectedly he now has ZERO neutrophils again
That puts him in the highest of high risk groups for infection!!
He has been extremely lucky the last 7 moths to only contract 2 mild infections. We have to wrap him up in cotton wool again to avoid exposure to anything!!! Of course, this rules out school completely
We've been able to reduce his pain meds and ween him off the steroids.
We were meant to meet with his doctor yesterday, but after waiting 2.15 hours - I gave up!! I mean - seriously?? That's just insane. I'm too tired, too stressed, and too everything to sit and wait that long!!
Unfortunately that means that we have no follow up appointments booked
When I calm down, I'll write him an email and get back on track!
All we actually needed was another prescription and lucky for us I saw the Fellow in Day Onc and she wrote it out
11th July
Rafael received a wonderful surprise on Thursday afternoon. At one stage, we didn't know if he'd be well enough
In the morning he woke up feeling much better - until 11:30 when he vomited everywhere due to the radiation and then slept for 2 hours
His friend Eddie arrived just after 1:30 and Rafael was so happy to see him and even managed to sit up on the sofa and teach Eddie the "ins and outs" of Dota (??? some new game).
Soon, some students from Yr 5 & 10 at Westbourne Grammar School started arriving. Rafael was very happy to see the "big kids" because they also knew all the "ins & outs" of the game! He perked up a lot. Even his Principal Mr Barklamb came along
At one stage his friend Sam wanted to FaceTime and Rafael wasn't sure whether he should. Mr B said "yes, let me talk to him!" Sam got such a surprise and Rafael giggled a lot
Ms Rasen is an excellent singer and she brought along her boom box and managed to get everyone singing a special song for Rafa - he even sang along
I think it's a great song to describe our Warrior.
Sorry the quality is not great, I'm terrible at recording stuff!!
8th July
Rafael slept all night but woke up a few times for pain medicine.
In the morning he was feeling very tired and lethargic, with a few intense areas of pain.
He had a scan at Peter Mac and then we met with Prof Hicks. The scan showed that all of the Lutetium had been taken by the tumours and he was very pleased with that (& us too!!!)
He took one look at Rafael and said "He's showing typical symptoms of radiation sickness"
What the?? We've never heard of it and Rafael has never had it before
Fatigue, sweats, headaches, vomiting etc ...... It will pass in 24 - 48 hours
We then went across to RCH for transfusions if needed and to meet with Dr Michael. As Rafael had only had transfusions on Monday, we weren't expecting to need them and we were right
Rafael slept most of the day, wherever he could - during the scan, in the chair, waiting at RCH, in the car....
A quick chat with Dr M and we managed to get him to agree to up Rafael's doses of steroids for the next few days until the tumour swelling starts to go down.
As were were leaving, my friend and her daughter were waiting to meet Rafael, Gigi gave Rafael a gift and he agreed to taking a photo. It was the first time he smiled all day!!!!
7th July
Rafael coped very well with the Lutetium infusion, no problems this time
He was given a really high dose - 8 Gbq!! We weren't expecting that ;-)
Our friend Sophie drove to Peter Mac and delivered Rafael's lunch - Subway ;-)
He was in a lot of pain when we got home (as expected), due to the tumour flaring.
He started to sweat a lot, was clammy, got the shakes and his temperature dropped to the low 35C’s!!!
We called his doctors and they wanted us to take him to ED. In typical Rafael fashion - he refused!!!
The Dr's told us to wait 1 more hour to see how he was, but Rafael finally fell asleep, so we left him be ;-)
7th July
7th July 2008 - official diagnosis day
7 years ago today
We haven't stopped fighting since!
In the weeks leading up, Rafael had 2 surgeries and was inpatient the whole time.
In the days leading up, in the brutally honest world of oncology - the doctor said to us - "you can hope it's not Neuroblastoma" !!!!
I still hate him for saying that and I'm glad he's left RCH now! Who needs to hear that?
It's been a non stop battle. We've had one 3 month reprieve (2012) where it looked like there was No Evidence of Disease (NED). Rafael is now battling for the 4th time
But this Beast, really is the worst! It just keeps trying to come back and take our son! In the famous words of Steve Dolling, it's "the Monster that lives inside our house"
These photos show each July over the last 7 years of Rafael's journey. He was 4 at diagnosis and is 11 now.
Compared to then and now - he is really struggling
His movements are slow and painful and he can't walk very far
He is very sad and spends all of his days when he's not at hospital at home alone with us and laying on the sofa. He has very little joy or fun in his life
We don't know what to do or how to make him happy and laugh again
He will spend today at Peter Mac receiving yet another dose of Lutetium, a Peptide Receptor Therapy. He was the 1st child in the world to ever receive this and up until now, it has always reduced his disease burden and gotten rid of his pain.
We are holding everything crossed for our Hero, our Warrior, that it once again helps him and gives him some quality of life back.
With hope
xxx
6th July
Early start today, platelet and blood transfusions = a long day ;-)
These are “top ups” ahead of his treatment tomorrow.
4th July
Today Rafael was able to sit in the car in some sort of comfort, so we drove to saffron on the Hill for a visit :-)
3rd July
I know I've said it before, I'll say it now and I'll say it again (many times) !!!
Thank you #TeamPeterMac
Next week we pass 7 years of fighting this BEAST!!! On his 7th Anniversary - Rafael will receive another dose of Lutetium at Peter Mac.
They scrambled the last 2 days to ensure his dose was included on the flight from Holland to Australia!!
Fingers crossed, hopes abounding that we can knock this Beast away yet again!!!
2nd July
Mr Menzies paid a visit this morning. Rafael’s friend Eddie was here too. They tried to play X Box for a little while, but Rafael was in too much pain and couldn’t get comfortable :-(
Angel Angela came in the evening and gave Rafael a very special massage to soothe his pain and aches :-)
1st July
A very tough week so far :-(
Rafael had an impromptu visit to RCH yesterday to meet with his doctor to try to get pain under control.
Dr Michael has also agreed to Rafael having another dose of Lutetium next week at Peter Mac :-)
The meds are working, but geez - he's a zombie!
Today he was lucid most of the morning. Dom agreed to take Gabriela to the local tennis courts for a play "match". When Rafa heard this, he said "I want to come too, to play" !!! They also ended up playing Football (soccer) but Rafael was getting very tired by that stage
SOOOOO happy to see him off the sofa and willingly leaving the house
We are waiting for Peter Mac to contact us about doing local radiation to his spinal lesion to hopefully stop the pain (& pain killers!).
