Blog: December 2013

31^st December

Another year over, one I wish we didn’t have to go through :-(

So tough for our little Warrior!!

Yet, here we are, and he’s happy, healthy and fit – but still with a lot of cancer :-(

Let’s hope next year we can knock this Beast off the battlefield once and for all!!!

We had a quiet night at home, watching TV. Just before midnight I said we should drive to the Golf Club to watch the fireworks. We got there right on time, right underneath and witnessed a great 10 minute display :-) Very proud of our little “suburb” ;-)

 28^th December

A very special day today – we drove down to Portarlington to catch up with our dear friends The Watson’s :-) :-) 

My dear friend Julia was just diagnosed with stage 4 bowel cancer L They have 4 girls under 10 and she has a huge battle ahead :-( It has knocked us all for a six – no words :-(

We had a great day! We took all of the food and wine J The girls played in and out of the water and Jules and I drank and talked, drank and talked! Thanks to the hubby’s for child minding ;-)

27^th December

We took Rafael into RCH this morning to check his blood counts and as expected, he needed a blood transfusion – was a long day, but at least we managed to get through Christmas without having to go in ;-)

25^th December

Have I mentioned that Gabriela and Rafael like to sleep in - L A T E?????

We weren’t expecting them to wake up much before 11am but Rafa surprised us by getting up at 9 am :-) Of course, we had to go wake up Lela straight away!

The cyclone of present opening was over in about 20 minutes. Santa left lots of gifts, big and small under the tree :-)

Rafael was disappointed because he only wanted a Nintendo 3DS and Santa didn’t bring it!!! Bad Santa :-(

The rest of the day was very quiet for us, just eating left over’s and resting :-)

24^th December

Dom’s work had their Children’s party today, so Lela and Rafa had to wake up early to go into work with him ;-)

They had lots of fun and Santa even visited them there!

Big night here – 23 adults and children celebrating Christmas Eve – Santa even managed to stop in on his way across the world!!!

We ate too much food and had lot’s of fun – great night, great friends xxx

23^rd December

Happy 11^th Birthday to our darling Princess Gabriela!!!!

We were worried that you’d have to spend another birthday at RCH with Rafael having treatment, but we managed to dodge that and spend the day together. We love you SO much, you are a special girl, daughter and sister xxx

22^nd December

We have a nurse from the hospital that comes to our house the weekend after Rafael finishes chemo to give him an injection in his leg. It’s called “Neulasta”, it’s very tiny, but hurts a lot when going in :-( It helps his White Cell Count (WCC) increase after it drops.

While the nurse was here today, we asked her to do a finger prick blood test as Rafael was already saying that he needed a blood transfusion – almost a week earlier than normal!

Getting so close to Christmas, we wanted it checked ASAP and get any hospital visits out of the way!

I called the nurse in charge in the evening for the results and his Haemoglobin was fine ~ 100 :-)

20^th December

Last day for this cycle – all went well, in and out in less than 2 hours!

19th December

40C here in Melbourne today! Thankfully it was nice and cool at RCH :-)

Rafael really wants to go for a swim, but he has a line in his port and isn't allowed :-( The only way we could make it happen was if they disconnected today and accessed him again tomorrow :-( Not worth another needle for one day :-( 

Dom made his famous coconut cake and we took it in to Day Onc for the nurses to share ;-)

Instead we've spent the afternoon at home with the air con on :-) 

Rafael has hardly eaten the last few days and he does have diarrhoea from the Irinotecan, it's knocking him around now :-( He is covered in bruises so we are checking his bloods tomorrow as well as next week xxx

5th day of school holidays today and 5th day at RCH :-( No fun yet ;-)

18th December

No problems today. Lela stayed at home with Dom, so Rafael and I had a very quiet day. he just watches You Tube videos the whole time we are there - the conversation is very light ;-)

I did mange to catch Dr Michael to sign a form for Rafael to go on camp with Camp Quality.

Whilst he was there, we had a long discussion about the next stage of Rafael's treatment and have agreed to the next steps.

I wrote him a long email in the afternoon to remind him of all we'd discussed ;-) He actually likes that as he can be a bit forgetful ;-)

So, Rafael will have 1 more cycle of Irinotecan/Temozolomide on 6th January.

Then he will be admitted for 24 hours of hydration to test his urine output and kidney function to give a clearer idea of what his kidneys can cope with. at the same time he'll also have Bone Marrow/Trephine aspirates to use as a benchmark with the new chemo regime.

So far he's been having low doses of chemo. Already his hair is falling out :-(

On 27th Jan (depending on blood counts) he'll start 2 cycles of a higher dose (but not high dose) chemo called TVD (Topotecan/Vincristine/Doxorubicin as per the European high risk protocol.

He will have this inpatient, for 7 days. They want to keep him in so that they can monitor his nausea and renal function.

If he tolerates it OK and his counts recover within 3 - 4 weeks, he'll have a 2nd cycle. After that, his bone marrow will be tested again and he'll have scans. Depending on those results, he'll either have another 2 cycles or move up to High Dose chemo with stem cell return.

It all depends on his bone marrow and whether his kidneys can cope! Clear as mud hey??

17th December

Much smoother today, except Rafael said he was feeling sick in the car and he left his window down.

While we were waiting to go into Day Onc, I could see that he wanted to go to the bathroom but it was occupied. I told him to use the one in Day Onc. He is stubborn (have i mentioned that??) and wanted to wait! Then he just looked at me - very pale and green and said 'i'm going to be sick!" I dashed through the doors and just got him to the toilet in time for a huge vomit :-( :-( Poor little guys, all his breakfast gone :-(

16th December

Jeez, I'm glad we didn't come in until midday - not!!! We had to wait 1 1/2 hours before the chemo was ready and they called us into Day Onc. By that time, there was only 1 seat left, the place was packed! I was in such a bad mood with them all. They didn't even come to us and say something like "Oh, the chemo is delayed, why don't you go off and eat something"!!! No, they just left us sitting there with no explanation - gggrrrrr!!!!!

Finally it started and I eventually cooled down, but they knew I was p*ssed - big time!!!

13th December

We had an interesting morning in the City ;-)

I took Rafael's medicine to breakfast with us as he needs to have it with food. He saw the Nutri Grain on the buffet and asked for 2 serves, mixed with Cornflakes. He did really well and ate it all. Then I had to ruin it by giving him the horrible Ceferoxime (without his grape juice) and he promptly vomited it all back up :-( :-(

After that, we walked to Myer to look at the Christmas windows. Lucky we got there early as by the time we finished, the queue was very long ;-)

Rafael had a Myer voucher that was sent to him earlier this year and he wanted to buy some Pokemon toys. Meanwhile, we were in touch with our friends who were meeting us at Myer.

They headed up to the toy department while we were finishing Rafael's purchase and their son slipped on the escalator and cut his knee very deep :-(

Do you know how hard it is to find a GP in the city???? I looked after their daughter whilst his Mum took him off for some "super glue" stitches :-(

We ended up at Dom's work and met him for a coffee :-)

After that, we headed to RCH for Rafael to have his blood counts checked, get the go ahead for chemo to start on Monday and wait for pharmacy to prepare the Temozolomide (oral chemo) 

Arrghhh!! everything takes forever there :-( 2 1/2 hours later we were done and finally on our way home :-)

When I got home, pharmacy called to say not to come before 10:30am on Monday because the chemo would not arrive until that time!

12th December

Rafael's last day in Grade 3 and his last day at the Williamstown campus :-( We have loved that school so much and will miss it after 6 years - won't miss the driving though ;-)

I took one of Rafael's winter shirts with us and got all of his classmates to sign it :-)

We received some shocking news this morning, one of our dear friends has Colon cancer :-( She has 4 girls under the age of 10. I was driving the car when Dom told me - just so unexpected and awful :-( My heart breaks for her, but I do truly believe that she'll beat this Beast, just like her birthday twin Rafael!!!

Actually, it's been a bad month of news :-( Rafael's teacher has been in ICU, in a coma with a lung infection and last week another friend was diagnosed with MS :-(

The final day of school always ends with Speech Night at the Town Hall. This year we decided to book a hotel instead of rushing in and then getting home late ;-) Unfortunately - I picked the wrong hotel!!! The pool was closed for maintenance and they didn't tell us when we booked :-( Lela & Rafa were so excited about going for a swim!!!!

We met up with 2 other families in federation Square for dinner and the children all ate lots, as well as us ;-)

Speech Night was good. Lela sang twice with the Choir as well as the whole Junior School performing.

2 students from each class receive awards and this year Rafael was the recipient of the Courage Award :-)  You weren't allowed to clap until all of the awards were presented, but I heard 2 distant whistles form the crowd ;-)

Afterwards, we went to a bar and had a nightcap with another family. Nice way to finish the year :-)

11th December

Rafael had an appointment with his Endocrinologist this morning. It was at 11:20 and I hoped to have him back at school in time for their special pizza lunch. Well, after waiting 55 minutes to be called in and a quick 5 minute discussion, we were out of there!!! The plan is for Rafael to have a Zolodronic Acid infusion every 4 months for up to 2 years to control bone pain.

Just made it to school as the children were about to start eating :-)

Had a good telephone conversation with Michael tonight to clear up some misunderstandings about Rafael's next 2 rounds of chemo. It looked like we'd be moving to 2 weeks of chemo and then 1 week off, which meant the next cycle would mean we'd be there over Christmas :-(

Anyway, got it sorted and it will be the same as before - 1 week on and 2 off :-) :-) 

10th December

Gabriela came home form school VERY excited today!!! It was announced that she has been selected House Captain for Steedman next year :-) Congratulations Princess xxx

8th December

We were lucky enough to buy some tickets to Bon Jovi for $35 each!!! We went to the cafe for a late lunch so that we didn't have to eat much in the city before the concert.

I'm not sure how much the children enjoyed it?? Rafa like fit when there was a song he knew ;-)

Dom and I really enjoyed the show!!

7th December 

Nurse Sandy called us at 8:30 am to say that Rafael's Hb was down to 69 and Platelets down to 19 :-( We weren't too surprised! She was arranging for both to be transfused as we headed in.

Dom stayed at home with Lela, so just Rafael and I to keep each other company ;-) It was a very quiet day. We managed to get a room on the ward and Rafael mostly played Minecraft on his computer.

It was a longgggggggg day ;-)

6th December 2013

Rafael had a special day at school today called "2014 Day".

He went up to the Truganina campus and was put into his class for next year :-) He caught the bus in the morning with Lela :-)

He was very happy to hear that 2 of his best friends - Kane 7 Joe will both be with him next year.

He was looking tired and pale this morning, so I picked him up from school and took him to Werribee hospital for a blood test. We sometimes go there as it's close by and they have their own pathology lab and usually the results are sent to RCH within 1 hour.

Well not today :-( For some reason they sent it off to their main lab in Heidelberg and the results weren't sent through to RCH by the time the nurses left :-(

Blog: November 2013

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 :-)

29^th 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.

28^th 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! :-)

27^th 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 16^th 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.

26^th 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!

25^th 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 1^st 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. :-(

24^th 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!!!!!!!!!

22^nd 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 ;-)

21^st 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.

20^th 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.

19^th 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.

18^th 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! :-) :-) 

17^th 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 :-) :-) 

16^th 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.

15^th 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 :-(

13^th 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.

8^th November

Yeah – last day of chemo :-)

7^th 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 :-( 

6^th November

Just Rafael and I today – day 3 of chemo

5^th 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.

4^th 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!!!