Sunday, 1 September 2013

Blog: September 2013

29th September

On our way to SOTH, we stopped at Tooradin to catch up with Ingrid. Her Angel Jordan and Rafael used to spend many hours together playing Nintendo in Day Oncology.

He has been gone for 2 years now and it was such a pleasure to meet up with Ingrid and have a good old chin wag :-) xxx

What can I say about our wonderful day??? From the minute we walked in, pugs, pugs and more pugs, surrounded us!! There wee quite a few who were just visiting – staying over the holidays and being looked after.

In fact, Basil doesn’t live there anymore; he is in foster care and is being adopted next week. His carer held off on sending him to his new home for a few days, as they knew Rafael was coming and wanted to meet him :-)

There was a photographer there from the Herald Sun and he spent considerable time trying to get the pugs to jump on Rafael ;-) The sun and the dogs didn’t help ;-) There will be an article in the paper next week. He emailed me some of the pics! Just divine. In the end, it was 2 of the older ladies that stole Rafa’s heart – April Ann and Grandma Giggles :-)

Bob is SO cute!!! I just love his squishy face ;-)

Gabriela even made a non-pug friend! They have another rescue dog called Lola who is very timid and afraid – she actually let Lela pat her! Gabriela was throwing balls for the dogs and also feeding a horse next door.

We had the BEST day :-)

 28th September

Rafael helped Dom make a cake today for us to take on our special trip tomorrow :-)

We are going to visit Saffron on the Hill. It is a non-profit group that rescue pug dogs. We have been following them on Facebook and Instagram for some time and we just love how cute they are! Gabriela and Rafael especially love Bob and Basil.

I wrote to the owner and asked if there was any chance of us visiting, to say Hi and give the pugs a scratch? She replied straight away and said yes!! We had to juggle it around Rafa’s chemo and blood counts, but all the stars have aligned for tomorrow ;-)

27th September

Rafael and I picked up Gabriela from Camp in the afternoon – I was surprised, she actually came up and gave me a cuddle :-) She had an absolute ball and loved her week :-) Thank you Challenge!!!

26th September

We did the cross match yesterday afternoon, so today only took about 5 hours instead of 6 ish ;-)

25th September

Back to RCH for blood count check and meeting with Dr Michael.  As expected, his counts had dropped and he needs a blood transfusion tomorrow :-(

23rd September

Ah, another year older ;-)

Rafael and I had a great lunch together, sharing his favourite pizza at our favourite café – The Waterstone Café here in Sanctuary Lakes :-)

In the evening the 3 of us went to a local pub. Quiet without Lela :-(

22nd September

Gabriela headed off to Urban Camp today with Challenge for 5 days!!! We hope she has a blast! They will be visiting many Melbourne attractions, including the Show, which we’ve never been to ;-)

21st September 2013

Presentation day at soccer today. We didn't know if Rafael would be able to make it - but he did :-)

He couldn't walk very far, but his friends came up to him to say Hi :-)

After the trophy's were presented to the U9 teams, Mick called the committee members up as well as us and presented Rafael with some beautiful and touching gifts!! A signed Melbourne Victory top, his own personalised Point Cook Jets top - "Rafael" on the back :-) As well as one for Dom too!

Lastly, they had one framed with a beautiful message from the team :-( It made us cry, even Lela - it was very touching :-) <3

20th September 2013

Last day of chemo and Rafael has tolerated it very well - no side effects :-)

Once Rafael is connected, the whole infusion and flush takes less than 1 1/2 hours. Just a pain driving in every day ;-)

19th September 2013

A quiet day for Rafael and I. Lela went to a friends house and Rafa's best friend Kane came to the hospital with us :-)

Afterwards he spent the afternoon playing Minecraft with Rafa at home :-)

18th September 2013

Another long chat with Michael today. Our nurse coordinator was also back at work, so she stayed for the meeting too :-)

Michael will be away next week at a conference and he is also attending a NB conference later in October in France.

They have asked him to present a difficult case - ummm, do we know anyone like that??? :-) Some of the top doctors in the world will be there and hear Rafael's history firsthand :-)

The plan has changed again ;-) The next round of chemo will be in 28 days, not 21 (our request) and the dose of Irinotecan will be doubled. Bone marrow aspirates will be checked after that cycle.

Irinotecan can cause nasty diarrhoea and Rafael is taking medicine to prevent that. So far, so good :-)

I mentioned to Rod that we had run into Peter and he wrote this today "Peter and I both care very much for Rafael so it is no hardship spending time making sure that all options are carefully considered and quite natural we, like you, feel sad at times that he is struggling at present."

17th September 2013

Dom's birthday today :-)

Rafael doesn't like to leave the house when he doesn't have to, but we convinced him to go to the local pub for dinner :-) 

16th September 2013

First day of school holidays :-)

Made it home from LA in good time, my friend on the flight made me some very strong coffee's to get me through the day.

We already have the Temozolomide chemo at home and we started that in the morning. It has to be given 1 hour before or 2 hours after food.

Plus Rafel is taking the oxycodone morning and night, steroids after food and a new antibiotic with food twice a day!!!

The Irinotecan has to be given at RCH as it's an IV infusion. That means I have to drive i there each day :-( It cannot be given less than 1 hour after the Temozolomide!

We knew that today would take a bit longer as they have to access his port first and waiting to get into Day Onc can also be long ;-)

Dom was worried about Rafael's counts as he was really tired and pale, so we had to get the go ahead to even start any of the chemo first!

We ran into Rafael's favourite "finger pricker" friend in Pathology :-)

Blood counts came back all good to go :-)

We ran into Dr Peter and he popped in to visit Rafael. It was so good to see him again and we had a brief chat. He seemed really sad, not about Rafael, but about his new role an the doesn't "fit in" at RCH :-( :-( 

14th September 2013

Rafael is in a lot of pain again, mostly in his leg and has been crying today "just because he wants to" :-( 

He woke up complaining of pain when he tried to breathe.

Dom just called me to say it was worse and he is taking Rafa to the ER. He called the hospital first and they said he should call an ambulance! I said he should call an ambulance! But Rafa said he was feeling better - so, no ambulance!

Just one stressed Daddy at home and one very stressed Mummy miles away on the other side of the world 

The Er Dr's couldn't find anything wrong. They think that it's probably something gastric, putting pressure on Rafael's lungs due to all the different medicines he's taking :-(

13th September 2013

Gabriela & Rafael didn't go to school for their last day before holidays and Dom stayed home with them both and fielded emails/phone calls from docs while I flew across the Pacific  

Dr Michael and Prof had a 1 hr "debate" about which plan of action to take, use, what is best, what is curative, what is palliative etc. Would love to have been a fly on the wall!!!

Dr Michael still wants to try some chemo regimes on Rafa to give him a better outcome and we see his point. Prof also half sees his point 

Dr Michael also spoke to the bone marrow specialist at RCH - Dr Francoise and she said that they can do a test of Rafael's marrow to see if his stem cells will graft 

Short term plan - commence Irinotecan/Temodal on Monday as originally planned. Have bone marrow aspirates tested not long after to check for repsonse.

Long term plan - if Rafael's marrow can cope - Lutetium, followed by 3 chemos TVD and then stem cell return. This all has to be worked backwards from the stem cell bank as they need to have the cells defrosted by day 0!

Rafael started oral slow release oxycodone on Thursday night, but it hasn't kicked in yet and he's in a lot of pain again 

Dom is home with him and spoke to Dr Michael who said it may take up to 4 days to start working 

Michael also told Dom that his whole morning before clinic was spent discussing Rafael with many doctors ;-) <3 

We agreed not to start the radiation, as it wouldn't help with any of the other areas in Rafa's body :-(

Rod sent me an email at the end of the day after he'd spoken to Dom. Whilst he's not "happy" with the plan, he does feel the need to keep Michael "engaged" ;-)

12th September 2013

I had to leave the PAF in the middle of Gabriela's performance as Dr Michael was calling :-)

We had a very long chat again and once again, the plan keeps changing! 

Then a long email exchange with Prof Hicks. At the end of the evening, those 2 agreed to get together tomorrow and work out a plan 

11th September 2013

As per Jessy's request, we were back at Peter Mac bright and early :-( 

Dr Greg was running about 1 1/2hrs late - grrr!!! We were all very tired and bored waiting!

When we finally got in to see him, he was late because he'd been upstairs talking to Rod and also calling Dr Michael :-)

Based on the GaTATE result, he said that we could do rx of the neck and possibly use a wider area. He talked about many different options - giving more rx over shorter time, giving less over longer time, maybe trying to do some on his leg as well!!!

Dr Greg Wheeler told us that Rafa's disease had progressed and we asked him to show us the scan and he replied "Are you sure?" 

It was really bad!!!!!!!!!

We thought the scan back in March was bad, but the images we saw were much worse  Every bone in Rafael's body is packed with cancer, it has even spread to his ankles and hands.

When we heard that Prof was back, we went upstairs to say Hi. When a doctor has tears in their eyes - you know it's not good  

We had a good chat with him and his suggestion for high dose Lutetium with stem cell support makes perfect sense. We are now waiting to hear if Dr Sullivan agrees. He said he'd call this afternoon/tonight.

The plan keeps changing nearly every day! Meant to start neck radiation on Monday to relieve Rafa's pain, but the term "spot welding" was used and that's exactly what it'd be. If they start rx on neck, where do they stop? Leg? Jaw? Arm?

Rafael's pain is not localised to his neck and after seeing the scan, we understand why  No wonder he's been in SO much pain!

His bone marrow is full of cancer and unfortunately, his bone marrow is just so whacked from years of treatment. He still has 2 bags of his own stem cells frozen. Higher doses of chemotherapy aren't really an option due to his marrow involvement and poor kidney function. Also, his bone marrow now has 
Myelofibrosis, and his own stem cells might not have the "soil" for the "seeds" to be planted.

10th September 2013

Didn't have to be at Peter Mac until the afternoon :-)

Firstly we met with a radiation planning nurse and they made a mesh mask (like bees wax) of Rafael's face and neck so that he doesn't move whilst the radiation is being given.

We really hate the idea of using rx as it's very damaging to the bones and those ones in Rafael's neck that are treated will not grow :-( Dr Greg Wheeler said we'll be able to notice, but it may not be noticeable to everyone ;-)

Rafael coped really well with the planning, I would have been so claustrophobic! 

After that we headed over to the PET centre and Rafael had the Gallium injection prior to his scan.

Can you imagine that 3 doctors were discussing this late on Friday and here we are on Tuesday and it's all happening ;-) When Prof says "jump" …….

We knew that Rod was going to be away for a few days, so after the scan, we didn't stick around.

Jessy came to see us with a letter for an appointment with Dr Greg Wheeler tomorrow!!! Argh :-( I thought we were done with that :-(

Tonight was the 1st night of the Westbourne Grammar Performing Arts Festival. The steroids helped a bit and Rafael was able to join his class and perform the whole Grade 3 show - "X Factor" :-) :-) He was a "Chikka Rapper" and we loved it!

Gabriela is performing for 3 night with the Grade 5/6's, theirs was very funny, lot's of one liners :-) Lela was in the front a lot and she looked so beautiful, really enjoying herself :-)

9th September 2013

Rafael made it back to school for 1/2 a day :-) His friends and teachers were all so happy to see him :-)

Clinic appointment again today and check bloods - all good :-)

We are going to Peter Mac tomorrow for scans and planning for radiation. 

Michael agreed to a longer course of steroids whilst Rafael is having the radiation, so we will start off at 3 times per day and ween him down to once per day over 3 weeks :-)

8th September 2013

Rafael managed to play his last soccer game for the season and it was against his old team, Altona City :-) He was in a lot of pain and he didn't really try to go for the ball, but if it came near him, he'd give it a good go ;-)

In the afternoon he even went for a play date at the home of 2 girls from the other team who live nearby :-) 

6th September 2013

Each time before we have a clinic appointment, we need to go down to pathology and have a blood test. They just prick Rafael's finger and gather a few ml's in tiny bottles. Been doing it since day one, Rafael is an "old pro" now ;-)

After the test, we usually have to wait 1 hr to get the results from our Dr or nurse.

Today we were at Maccas and Rafael was enjoying his fries and milkshake when the nurse in charge called me to say that Rafael's haemoglobin was really low and that pathology had called them to have it re checked :-(  

There I was thinking it'd be a quick in and out visit ;-)

We went up to day Oncology and they accessed his port and redid the blood test, plus took an extra sample that they use to cross match the blood.

As it turned out, in just 2 days, haemoglobin count plummeted from 94 to 55 :-( 

Blood transfusion takes at least 3 hours once they've started :-( Long day!

Instead of seeing Dr Michael in his room, he came to Day Onc to see Rafael. He took a look at Rafael's eyes and said that he thought he'd need a transfusion, at the same time, the nurse came in and confirmed that Hb was 55 ;-)

Michael has talked to Dr Greg Wheeler at Peter Mac about doing radiation on Rafael's neck as a way to ease the pain also. 

Michael said the MRI results were back and there is no collapsed bone, no nerve impingement and no tumour in cord. Therefore, what they see is his bone disease. However, it's not new, the MRI has shown this before. It's in the bone deep inside his skull and it hasn't increased.

We suggested more radionuclide therapy as opposed to radiation as it's less damaging to the bone. However, the down side is that the radionuclide will affect ALL his marrow counts :-(

We know that he cannot have steroids long term, but we explained to Michael that Rafael has 2 important days coming up and we really wanted him back on the steroids!

He agreed and wrote us a prescription :-)

In the evening, a long email exchange ensued between Michael, Rod Hicks and ourselves.

In planning for radiation, they need to do a CT at Peter Mac to pinpoint where the beam will go.

Rod suggested doing a GaTATE instead, as they can also use that for planning and Michael agreed! We've been wanting to get one done now for weeks ;-) Love Rod :-)

4th September 2013

Clinic appointment with Michael today. He'd only had a quick look at the MRI and the radiologist had not officially reported on it, so we need to wait to hear. :-(

We talked to Michael about "quality of life" and what's important to Rafael - a 9 year old boy! He hasn't been to school in ages, he can't play soccer, he needs us to help him get from the bed to the sofa downstairs - no quality at all!!

3rd September 2013

Rafael had his MRI first thing this morning, didn't have to wait. Unfortunately, the doctor only ordered the neck area, so we can't find out what's going on in his leg too :-(

2nd September 2013

Yeah, Rafael's oncologist is back in Melbourne  Dom sent him an email this morning explaining the level of pain Rafa is in and all the medicines he's taking etc. RCH called this afternoon and they've booked Rafa in for an MRI first thing tomorrow morning  Let's see if we can get to the root of the cause and work from there!!!! xxx