Friday, 31 May 2013

Blog: May 2013

31st May 2013

Westbourne Grammar held their Athletics carnival today. It's a shame Rafa couldn't make it :-(

I went along to watch Lela's events and she had a really good day. Thankfully the weather held off!!

We went straight to the hospital from there, Gabriela hadn't seen Rafael the whole week!!!

He was very happy to see her and even got out of bed and they did some colouring together on the sofa :-)

30th May 2013

I didn't go into the hospital today :-(( Dom is working on the laptop and I needed to pick up Lela and then take her to her lesson at Church at 7pm. Logistically, it just worked out better this way :-(((

Last night Dom made microwave popcorn and Rafael ate nearly the whole packet :-))

Today he ate a little bit of cheeseburger and all the fries :-) He's lost nearly 1 kilo already :-(

He hasn't had a temp for a few days, so we are just waiting for those neutrophils to appear ;-)

He had a surprise visitor this afternoon - his teacher!!!! Mrs Cameron popped in quickly and brought his favourite - white chocolate!!!

She also gave him cards that the other children had written for him. After, he told me he put them in 2 piles, favourites and not favourites!! Bahaha ;-) He did read them all xxx

29th May 2013

Really great day today ;-) My friend Jodie planned to visit us, and to my surprise, she brought her 8 year old daughter along too :-))) She took the day off school to visit and keep Rafael company. Mia and Rafael have never met, they both share a love of Minecraft, are both in Grade 3 and they hit it off fabulously!!! 2 peas in a pod :-)

Mia gave Rafael a Minecraft t-shirt and some very funky glow in the dark squishy stuff. They watched Minecraft videos for a while and attempted to connect online via iPads. It was just so cute seeing them interact. They both sat in the bed and chatted away, as if they'd known each other forever ;-) Mia brought her Ninja Puppy in too - so cute!!!

Eventually, they decided they needed a dark place for the glow in the dark to work. Mmmmm?? Where would be a good place? - The bathroom!!! So, off they go, Rafael with his pole and IV attached, ordering us to put pillows against the door to block out the light and the played and giggle to their heart's content :-)))))

Mia was really sad to leave and Jodie told me that she cried on the way out because Rafael would be lonely with no one to play with :-(((( Bless xxx

Jayne stopped by for a chat. Nothing has grown on the blood cultures yet. If nothing does, once Rafael's neutrophils start to recover and reach 0.2, then he can leave!!! Who knows when that will be???

We also talked about the next round of chemo and I asked if we can do it inpatient, as driving and going to Day Oncology for 5 days will be a huge drain ;-) She said that she had actually booked us last week for the 5 days and she didn't understand why they made us leave :-(

Anyway, it'll be sorted next time. 

When Rafael woke up this morning, I could see his hair on the pillow :-( When I washed his hair, lots was falling out :-(

He said "Mummy, I'll be bald soon". I said "Maybe not, you have SO much hair, maybe it'll just go thin??" He replied that he'd prefer that :-(( 

Let's see xxx

The teacher came at the end of the afternoon and spent 1/2hr reading with Rafa. He told her he doesn't like to read!!! They started with the sports section of the paper and there was an article on Harry Kewell, which he read easily :-)) 

After that, they moved on to a book that Jodie bought for Rafa :-))

Just before I had to leave to meet Lela after school, another of Rafael's school buddies popped in for a visit, Georgina and her Mum :-) Georgie talked a little to Rafa about school and their oral presentations and stuff xxx

28th May 2013

Dom worked from the hospital and I went in later and swapped over. It took ALL day for them to get the blood transfusion going. It seems that no Dr actually wrote up the order to do it :-(((

One of the teachers came in to chat to Rafael about school and has booked a lesson with him tomorrow.

Well, let me tell you - at 6:30pm when it finished, Rafael perked right up, almost back to his normal self ;-)))))))))

The nurse and I kept telling him that he needs to take the dressing off his neck where the tube goes, as it's dried blood only. He kept getting stressed about it and even said to me " But Mummy, I won't be able to breathe"!!! I think he thought he had a hole in his neck. After it was off, he made me take a photo with my iPhone so that he could zoom in a see. I told him it looks like a snake bite ;-) 

He asked me to buy him chocolate ice cream. The size of the containers looked small, so I opted for the largest (4 scoops) & of course, most expensive!!! Seriously - $7:20 for ice cream?????

He managed to eat it down to just below the cup level. His mouth was starting to hurt, looks like he has an ulcer :-( 

27th May 2013

And it's back to hospital we go :-(((((

Rafael's temp kept creeping up all day. By 2pm, one ear was 38.2 and the other 38.4 :-(( Considering he has no neutrophils to fight infections, it meant that he had to go straight to E.R. :-(

It wasn't a frantic dash, I took my time and packed our bags and got everything we'd need for a long stay :-(

ER was smooth, Oncology had called to let them know we were on our way in.

Rafael cried a lot as we left home, he really didn't want to go back to hospital and he was getting very anxious about having a needle in his port :-( 

The nurse put Angel cream over his port as soon as we got to the ER. Rafael could not stop thinking about the needle :-(

I asked them to call a play therapist to come and chat to Rafael and try to calm him down. They had an iPad with FIFA 13 on it and Rafael was in heaven ;-)

Our friend Sarah contacted a publishing company about a kids magazine called K Zone and they have kindly donated a 1 year subscription to Rafa!!! The 1st one arrived today, so I kept it and gave it to him in the ER ;-)

Of course, being the little watcher he is, he stopped playing as soon as the nurse arrived with "The NEEDLE" !!! He was crying a lot and he didn't like her touching the port site. As for the needle - once it was in, he asked the nurse when she was going to put it in!!! So we know that the cream works :-))

They took blood for testing through the line and sent some off for culture testing too.

They started him on a course of antibiotics to help fight whatever bug might be there.

About 6:30pm we were moved up to the ward. On the way there, 1 of Rafael's sneakers fell out of the bag - never to be seen again!!! WT??? Apparently the hospital doesn't have a lost property section :-(

Dom came straight form work and stayed overnight with Rafael.

His platelet count was less than 10, so they gave him a transfusion straight away. Tomorrow he'll have a blood transfusion as his Hb was down to 78.

When I showered Rafa this morning, he was covered in bruises, especially around his neck, from the surgery that was over a week ago :-((((((

26th May 2013

Another school friend, Nathaniel came for a quick visit today :-) Once again, Rafa asked to play X Box ;-)

Our great friends Julia and gary were staying in the city for the weekend, without their children and they came a long way out of their way to pop in and visit Rafael :-))))))) xxx

Later in the day, Kane came over and kept Rafael company while they played Minecraft together ;-)

25th May 2013

"Best day since chemo" - said by Rafael at the end of the afternoon ;-)

His Junior School Principal, Paul and Reverend Tim popped in for a surprise visit just after lunch. Paul bought Rafael a puzzle and he loves it.

During their visit, his friend Riley from school arrived for a visit too. They played the puzzle, then lego, then Rafa asked me if they could play X Box - of course!!! It's the first time he's even wanted to play all week.

While they were playing, Rafael other school principal, Nicole, arrived to drop off some food and she popped upstairs to say "Hi". We wonder what Riley must have thought - "Is Rafael in trouble with all these teachers here??" ;-)

After everyone left, Rafael and Dom played X Box for ages, FIFA 13 and they were yelling and screaming and laughing :-))) 

24th May 2013

We had to leave by 7 am today to get blood tests done before our 9:20 appointment with Dr Peter :-( Yawn ;-)

I upset Rafael because I told him he was having only a finger prick blood test today. I forgot to mention (honestly!) that he would be having a small needle in his leg to help his white cell count recover :-((( He became very anxious about that needle!!

Blood test results weren't in by the time we finished talking to Peter.

He just returned from Germany, but he didn't get new info about NB :-((

He said that Rafael will go straight into a 2nd cycle of topo/cyclo and then his bone marrow will be tested again.

He also mentioned that maybe we can apply/ask/beg the manufacturers of CH14.18 to give it to him on compationate grounds. He said they've tried before, but you never know ;-)

He said that Rafael looked very pale, so we were expecting him to need a transfusion today.

Rafael has lost 1/2 kg in the last week :-(( Damn - he was getting so close to that elusive 20 kg mark!!!

We went into day oncology for Rafael to have a small needle in his leg. They had already applied numbing cream, so I thought it would be a breeze - wrong!!!!!

Firstly - Rafael did not feel the needle at all!! Once it was in, he asked the nurse when she would do it! However, the injection itself made him scream!! It was awful :-( Rafa doesn't usually react like that to stuff, so it must have hurt a LOT :-((( It lasted a few seconds and then he was fine ;-) The nurse gave him a lollipop AND a lucky dip prize :-)))

Just after, Peter came to see us and let us know that counts were "just" ok and we could go home!!! Of course, all the other stuff apples - if he gets a fever he needs to go to Emergency, if he's bruising or bleeding he needs to go back in ;-)

Rafael and I grabbed our bags and "ran" out of there ;-)

Next appointment is on Wednesday to check bloods again, but we'll probably need to go in again before then ;-(

As soon as we got home, Rafa vomited :-(( For some reason, he's not coping with car travel these days :-(

We both spent the day on sofas, versing each other in a silly game called Running with Friends!! We laughed so much, he is beating me by miles XXX

23rd May 2013

Rafael had a quiet day at home :-) 

When he woke up, I got him into the shower and he finally had a "good" wash. I was expecting have handfuls of hair falling out, but so far ... none :-)))

He came downstairs today and was happy to watch t.v.

His BFF Kane came over after school and he sparked up SO much - best medicine :-)))

After playing their obligatory Minecraft, Rafael even got up to play some soft ball throwing with Kane :-) I could see that he was in pain, but he was up and enjoying himself!!! 

He went to bed very early and happy xxx

22nd May 2013

We let Lela sleep in for 1 hour today and I drove her to school :-)) She needed it.

Last night before bed she was crying a lot. She doesn't say a lot to us and I often wonder if she's ok and how she's coping :-(((((

Rafael woke up before she left and basically spent the day in bed watching t.v. and resting.

Guess what I did? Rested in Lela's bed alongside Rafael's!!!! Bahaha

Rafael hasn't eaten much, but he also hasn't vomited. We've been getting him to drink lots of water as well.

Rafa's teachers have sent a few small projects for him to do, but he's not interested at all. I'll get the whip out tomorrow ;-)

He also received a very cute video and some photos from his buddies. He really loves and misses his friends the most, he's such a social child :-((

More food delivered today :-(( Jo cooked an organic bolognese for Rafa and pointed out to him that there weren't any veggies in it!! Bahaha xxx

Tia Gisele came to the rescue and made a batch of Pao de Quejo for Rafa as it's about the only thing he's eating these days :-) xxx

21st May 2013

L O N G, L O N G, L O N G day :-(((

As soon as we got to the car park, Rafael started vomiting :-(((

After waiting in reception for 1 hour, we finally got into Day Onc., only to find out the quiet rooms were already taken. Luckily we got the last bed, in a curtained off area.

We got there early in the hope of going home early - but that was blown out the window ;-(

After the initial 2 hr pre hydration, Rafa had only peed 40ml's!! They kept it going for another hour, then another hour and finally decided to give a bolus of 500ml per hr!!!!

Therefore, pre hydration ended up taking 4 1/2hrs before chemo even started :-(((

Dom was working on his laptop and kept busy throughout the day.

A friend of mine from work came and spent a few hours which was just awesome!!! She brought me a nice coffee and some home made cake as well as a beanie she crocheted for Rafael :-))) XXX

Rafael hardly ate anything today, but did want to eat some white chocolate in the afternoon - bad choice!!

When the nurse was changing the chemo's - Rafael vomited ALL over himself :-(( He had been lying down, and due to his stiffness and pain, couldn't get up in time! It was in his hair, down his back, front - everywhere!!!!

They don't have a shower in Day Onc., but were able to arrange for us to take him across to the ward for a bath and clean up.

After that, it all really hit Rafael and he looked so drained and tired and we suggested he try to sleep and he did :- )))) For about 1 hr xxx

After all the infusions were finished for the day, it was time for them to take the needle out of his port. it all went well, Rafael is still very sore and tender. The nurse had to take all of the dressings off as they were stuck together, but she cleaned it all up and out a new dressing.

We saw for the first time exactly where the port is and the cuts :-(( 

Rafael was trying to be brave and strong and we told him to just squeeze our hands and scream!!!!

My Mum had cooked us a roast lamb and we managed to get Rafael to eat just the meat ;-)

We moved Lela's and Rafa's beds into our room, so now we are all close by and cosy ;-)

20th May 2013

First day of driving in to RCH. Dom stayed at home and worked from there. So it was just Rafa and I. We managed to get one of the quiet rooms in day oncology, with a bed and it was a Godsend!!! Day Onc was SO noisy today!!!!

Just before we arrived at the hospital, I realised I'd left my iPad at home on charge :-(((( Long, boring day for me ;-(

When we got to the car park, he was feeling dizzy and had trouble walking :-((

Rafael just watched t.v. all day and played on his iPod a little. 

The hydration and infusions all went well, some delays in getting started, but we were out of there just in time for peak hour traffic - joy!!

Just before we left, I realised that Dom still had Rafael's health care card after paying for the medication on Sunday. I needed that to get the patient discount for parking in the hospital. So instead of $8, it cost me $26!!! Long story, but suffice to say that Karma will come back and bite THAT security guy one day :-(((

Once again, Rafa was sick on the way home :-( The traffic was bad and it took us a lot longer, stop - start etc!! At least we now have a stash of vomit bags :-)

On Sunday I moved Rafael's bed into our room and today Dom moved Lela's too, so we are one big happy family, all sleeping together - lucky we have a huge bedroom ;-)
19th May 2013

Long day for me. I woke up at 4 am and started to sterilise the house, with the expectation that Rafa might be coming home tonight ;-)

As expected, the consultant told Dom this morning that Rafael would be discharged this afternoon after chemo and hydration were finished :-)) He was happy about it, I'm still apprehensive about the drive in and out ;-)

Gabriela had a sleep over party last night and I picked her up on the way into the hospital.

Rafael received visits from a few of his favourite friends today and that made him VERY happy :-))

Rafael was discharged with a pile of medication to take home late afternoon.

Poor little guy, on the last road home, he started to feel "car sick". Thankfully we had 1 vomit bag in the car and gave it to him in time. Poor Lela was in the back with him ;-)

As soon as we got home he wanted to start building the Lego ;-)

We were only home about 1 hour, when Nicole, the Principal of Willy Grammar arrived with lots of food for us :-))) I had not even thought about what we night eat!!! 

18th May 2013

I stayed at the hospital last night with Rafael. He wants Dom & I to take it in turns ;-)

I slept in the hospital bed, it was ok. The room is very quiet. The nurse came in the middle of the night to take some blood from Rafael's line and give him medicine and I didn't even hear her ;-)

Rafa slept really well. He slept on his back and hardly moved at all. He woke up yesterday at 5 am, so I was very happy to let him sleep in this morning. At 8:30 he woke up :-)))

He was very stiff an sore, so I asked the nurse to give him more pain medicine, to keep on top of it.

By 9:30 he was more relaxed and comfortable and I was able to give him a quick shower :-)

Chemo started an hour earlier today, all went well, once again, no complaints from Rafa xxx

Dom brought Lela and Nanna in to visit.

Rafa stayed on the sofa all day, we couldn't convince him to go for a walk today :-(

The nurse today told me that there "might" be a chance of being discharged on Sunday after chemo finishes :-)) He's only inpatient due to the surgery and this chemo combination can be given in day oncology. However, it's closed on Sundays, therefore needs to be on the ward for that infusion.

We won't know until tomorrow. We are thinking maybe on Monday they'll transfer him to day onc. and we can go home from there??? If we do this, it means driving in each day for the 5 1/2 hr infusion + however long it takes for them to start it ;-((((

17th May 2013

Chemo started today as planned.

Rafa is having a combination of 2 - Cyclophosphamide & Topotecan x 5 days.

They connected him up to I.V. fluids last night and ran it very low - 10ml per hour.

2 hours before chemo started, they bumped it up to 100 ml per hour. This is to protect his body and also keep him going to the toilet to flush the toxins out.

Cyclo is given over 1/2hr, then flushed for 15 minutes. Same with the Topo.

After that, there is another 2 hours of fluids. All up it takes about 5 1/2 hours.

Once the fluid was finished, we asked the nurse if she could disconnect him from the pump, as he didn't need anything else for today :-)) This gave him some freedom to try to move and walk around. Rafael felt nothing at all today with the chemo. He's having anti nausea medication around the clock to keep on top of it.

A huge white box with a beautiful green ribbon was delivered to Rafael. He is one of the only children I know who always reads everything that's written inside a card before opening a gift. He opened the card as was reading allowed. When he got to the sender, I burst into tears :-(( It was from Anna, Adam, Lucas, Matthew and Jake Marchio. How beautiful of them to send such a thoughtful gift to Rafa XXX. Lucas, we miss you xxx

My friend picked up Gabriela from school and dropped her off at the hospital -)

Rafael was SO happy to see her xxx

He is still in pain and taking medicine for it, but doesn't want to!

He asked for McDonald's for dinner and we made him walk down with us. It was a slow and steady pace ;-)

He is walking hunched over and can't turn his head as his neck hurts. We were very happy to see him out of bed though ;-)

Speaking of bed, Rafa has decided that it's the hospital bed that is causing him pain as it's uncomfortable. He has decided to sleep on the "parent's bed"  (a sofa/lounge) !!!!

16th May 2013

Admission day :-((

This week at school, all children in Grade 3, 5, 7 & 9 in Australia have been taking Literacy & Numeracy tests. Rafael made it to every test!! yeah :-))

Before Lela left this morning to catch her bus to school, she was hugging Rafael and saying goodbye, then burst into tears!! It just broke my heart :-(((

Rafael had to fast from 7:30am but was allowed water until 11:30 am.

Dom and I picked him up from school after their play time at 11:10, before heading in to RCH. Rafael started crying, as he'd miss his friends too much :-((

He is so brave and just puts on a brave face most of the time.

His class lined up outside their classroom and as we were leaving, they all said in unison "Good luck Rafael, we will miss you!!" Of course, this made both Rafael and myself cry ;-)

The plan was to be at day surgery by 12pm. The doctor yesterday told us that we were 2nd on the afternoon list.

Today, we found out that the patient before Rafael was a complicated one that would take 2 + hours!!

That meant that Rafael didn't go into surgery until 4:30 pm!! And he'd eaten nothing all day and drank no water since before 11 am :-((

So, we sat in the waiting area - all day!!! :-((

We were very happy to hear who the surgeon was today - Prof Yves Heloury. He is from France and he is the doctor who removed Rafael's "inoperable" tumour back in Jan 2010 :-))

When he came to talk to us, I asked him if he remembered Rafael?? In his thick French accent, he said "of course I do, I often check his blog to see what he's up to" How amazing is that???

It took a long time for us to be called to recovery due to the type of anaesthesia Rafa needs. I think it was about 6:30 pm before we saw him :-((

He was still asleep and so peaceful and cute!!

He was transferred up to the Cancer ward (Kookaburra). He was still asleep. He tried to open his eyes a few times.

This is our 1st time staying inpatient in the new hospital.

We were hoping for our own room and we got one!! The nurse that moved Rafa is one of the very 1st nurses who ever looked after him in Oncology, was nice to see a familiar face :-)

We thought that couldn't possibly start chemo so late in the day, and we were right ;-)

When Rafael woke up, he felt like he couldn't breathe. That was due to the tube that's now in his neck vein. It must be such a weird feeling, yet as a child, it's hard for him to articulate. Plus he woke up in pain :-(( The nurse brought him some oxycodeine in a syringe and he didn't want to take it. I remembered to use Lela's bribe and offered him $5 to take it. Oops - this could work out to be very expensive, might have to lower that to $1.

They have connected Rafael up to IV fluids via his brand new port and will run it overnight and speed it up in the morning before his chemo starts.

Considering he didn't eat or drink all day - he'll need it!!!

I had to leave to look after Gabriela. Mingo is staying tonight. The new rooms are so big and plush, don't know how they'll cope ;-)

Just before I left, Rafa needed to go to the toilet. He managed to stand up on the bed and we lowered it and he was ok stepping off and walking on his own - a little wobbly ;-))

So, tomorrow the "fun" stuff begins :-((


8 1/2 hours without any food :-(((

After surgery - trying to wake up xxx

Already using the iPad that Challenge lends to each child :-)

15th May 2013

Jayne booked us in to see a different doctor today as Dr Peter is in Germany.

Everything took a long time ........

Unfortunately, they could not get a good vein from Rafa!! Jayne even tried and she blew 2!!!! :-((

So they had to apply more Angel cream, wait an hour and try again :-((

Rafael had 2 bags of platelets infused. At the same time, we went for the U/S.

14th May 2013

Today was stressful for me as I had to go to Sydney for my 6 monthly exams and we still hadn't heard back from Jayne as to when the surgery was booked. Dom ended up calling/emailing her and throughout the afternoon, a plan was made!!

Port insertion on Thursday and then Rafael will be admitted to the ward to start 5 days of chemotherapy. We were a bit confused as Dr Peter had told us it would be 3 days.

Rafael needs to go to RCH tomorrow to check his blood counts, plus the surgeon has requested an Ultrasound if Rafael's neck to look at his veins and arteries, since he's already had a line in before.

12th May 2013

Mother's Day :-)))) Gabriela and Rafael bought me some cute gifts from their school stall and Daddy also helped them buy some nice shoes and a warm jumper :-)))

Rafael had his soccer game this morning and he played really hard!!! I took lots of photos and also my friend was there taking pics :-))

He managed to take the ball from a much taller boy!! Almost scored a goal and was knocked down by another boy - all in a days work for our Warrior ;-)

We went to the Waterstone Cafe for a late lunch, with my Mum and really enjoyed the day :-))))) xxxx

9th May 2013

Red blood cell transfusion today - it took sooooo long!! 7 1/2 :-(( Thankfully Dom came along too, so we were both able to be with Rafael :-)))

Jayne, the nurse coordinator came in and explained to Rafael what a port is and showed him some pictures. She also said that surgery had a spot for tomorrow and Rafael could have it placed then. He got very upset and said "No, I want to have a play with Kane (BFF) after school!! Plus I have my soccer game on Sunday!!" Of course, Jayne caved to Rafael's charm ;-)))

8th May 2013

We met with Dr Peter today. He had ordered additional blood tests for Rafael today and they had to take a lot of blood, he wasn't happy ;-)

His haemoglobin was back down to 78, so a transfusion is needed tomorrow. Platelets still hanging in there at 44.

Peter has said that we need to hit this hard and wants to start Rafael on 2 chemotherapies - Topotecan and Cyclophosphamide. We agree!!

Rafael will need to have a port inserted into his chest for IV access. Last time he had a Double Lumen Hickman's line and it restricted his life a lot. At least with a port, he can swim, shower etc ...

We talked about different trials overseas and ways of trying to get onto them. Peter is off to Germany next week for meetings and the hope is for RCH to join the German group, thus enabling our children access to their trials. Not sure if any of tht will happen in time for Rafael :-(((

3rd May 2013

Dr Peter called us at home tonight with the bone marrow results. I was surpirsed to hear from him as we weren't expecting the results until next week! As expected, Rafael's bone marrow is full of NB cells :-( They have frozen some are trying to get them tested for the ALK mutation that a few, rare NB children have.

The good news is that the cells have not mutated and are still non MYCN!!! :-)))

However, they found something strange, that none of the doctors have ever seen with NB. He has translocation of chromosomes 7 & 16 (t7:16) - what does this mean????

1st May 2013

Westbourne Grammar held their delayed cross country carnival for Grades 3 - 6 today.

Considering Rafael had bone marrow dug out of his back yesterday, I didn't think he'd want to race ;-)

He said his back was a little sore but he'd try!

Rafael's race was 2km and he gave it everything his little legs could :-)))

I think he walked some of the part, but we were close to the finish line cheering him on and he took off running to the end :-))

Gabriela achieved her goal this year - she crossed the line in 10th place and is going to divisional cross country in a few weeks!!! So proud of her, she wanted it so badly. Her race was 3km and she ran very well xxx

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