Wednesday 31 December 2014

Blog: December 2014

31st December

The end of another year fighting this beast :-( But what a year it’s been :-) 

Rafael has had so much treatment, his disease has tried to take over again, yet he perseveres, just takes and only every so often, complains about it all!! We love you so much Rafa, we are your parents, but we are also your advocates and we will keep “fighting” with doctors until they hear what we say ;-) 

30th December

Rafael just scrapped through today and didn’t need any transfusions :-) :-) Still no white cells!

27th December

Day Oncology has been closed for a few days, so that meant today was crazy busy! Rafael needed both blood and platelet transfusions.




25th December

A very quiet Christmas today, just us and my Mum. The cyclone of opening gifs lasted about 1/2 an hour and then we spent the rest of the day relaxing and enjoying a simple lunch together :-)

Rafael was disappointed that Santa didn’t deliver a Nintendo DS :-( Bad Santa!!! At some stage during the day, Gabriela reminded him that he had enough cash to buy his own! So now he’s asking us to take him to the shops tomorrow to buy one ;-)










24th December

Our annual Christmas Eve party with our good friends :-) We put a call out for a local to come and help Santa and give gifts to the children. A very funny guy called Steve volunteered and we had such a great night! I’ve met him once before, so he wasn’t a complete stranger ;-) 



23rd December

Gabriela turned 12 today!!! She has also grown up with this disease and she is so well rounded, a very happy and content girl :-) 


22nd December

A quick appointment with Dr Michael and another platelet transfusion. On the up side, Rafael’s teacher popped in for a visit :-) 





19th December

Another platelet transfusion


17th December

Wow - how we kept that surprise hidden until the last minute is unbelievable!!

This year, we could not take Rafael to the annual School Carol Service as he was too sick and we didn't have a chance to take Gabriela, who should have been singing with her Choir. We sent our apologies to the Conductor and thought that was the end for the year.

Somehow that email was sent to the Reverend, who spoke to the Conductor and they decided that if Rafael couldn't come to Carols, then Carols would come to him!!!

Tonight, we waited inside our house. Rafael was playing "Uno" with his friends and teachers, whilst scores of students were gathering in our garage!

Unfortunately the weather turned and it rained a lot today, but they were all able to sneak in and get into place under our alfresco without Rafael even realising!

Seriously - there was so much noise and so many people, but he was enjoying playing a game with his favourite people ;-) 

One of Gabriela's friends who also plays trumpet started playing and everyone was drawn to that part of our house.

The next hour was just the most amazing, special and heart felt gift that anyone can imagine. These children, averaging Grade 4 - 12, sang their hearts out, performed solos and gave us their time!

Some of them have already finished school, ready to move on - yet they found the time, on a cold and blustery Melbourne night, to once again don their uniforms and sing those special Christmas Carols that mean so much to us :-) 

Gabriela has been singing with the Choir for 4 years, each year Dom pesters her to ask the conductor to perform " Little Drummer Boy " and of course, Gabriela never mentions this to her teacher ;-) Once I knew this was happening, I told them about Dom's request ;-) 

Tonight, we had our very own special Drummer Boy and it was so touching and amazing and I just loved it!!!
For those Westbourne families that do follow his blog - please know that everyone that was here tonight, represented you all!! A very caring community and one that we are so happy to be part of!!!

The readings from Meg, Paul, Georgia and James were extra special and an added surprise!















16th December

Rafael only needed a platelet transfusion, so our day wasn't as long as expected ;-) However, we still had to wait a long time to see Dr M

We knew that he'd need platelets. When the pathology lady did his finger prick, his blood started dripping onto the floor!! Yep, a sure sign

The good news is that we have neutrophils!!! Not many, 0.3, but some. We are hoping and expecting to see a good jump in his White Cell Count next week

Tomorrow Rafael & Gabriela are receiving an amazing surprise at home. I can't say much now - but we are SO lucky to have such a wonderful school community supporting him (and us!!) 

The plan is now for Rafael to have a “permanent” booking in Day Oncology twice per week for platelet transfusions and blood as needed.



Rafael's Grade 4 report card comments (and he missed so much school this year) "It has been an absolute pleasure working with Rafael this year. He is a kind student who has demonstrated our four school values of ‘Community, Creativity, Scholarship and Courage’ in everything that he does both in and out of the classroom. Rafael has continued to focus on completing activities within the time allocated and asking questions when unsure about a task. Rafael's smile has a special quality that makes others feel good to be around him. He continues to inspire us in all that he does. I wish Rafael all the very best for the very immediate future and can not wait to see him develop further in Year Five."

13th December

We had a wonderful day today at Tierney and Tom’s wedding :-) 









12th December

After both blood and platelet transfusions Rafael was discharged today :-)

We call it red cordial and he is certainly bouncing off the walls tonight

Back playing soccer in the yard and cuddling his best buddy - Leo





11th December

Rafael had his stem cells re infused today, 84.5 ml = ~3 million stem cells.



It’s just like a normal blood transfusion. A nurse had to stay the whole time to keep an eye on things and a Dr was also close by all the time.

Literally, as soon as the infusion finished, Rafael’s port completely blocked!! Marni (the nurse) said it felt like cement. She could not push any fluid through at all, to flush the line.

Poor Rafael has been poked and prodded all afternoon, so many nurses trying their best (and Daddy too) to push some saline through! - nope, no luck. There is a very expensive drug called TPA (?) that they had considered using in Rafael’s port a few month ago. It is always playing up. But usually it’s the other way round! Drawing back from it and getting blood is very difficult. Well today it would draw back, but they could not push anything through!

He even had to suffer through a lot of pain as they tried to access his port again, without any prior numbing cream. Poor Raf, he was so upset and crying a lot. It really hurt

Dom & I have to stay strong for him and encourage him to be brave, but jeez! It's just so cruel

He's had an X-Ray tonight to try to see what's going on.

Eventually they ordered the drug and called Theresa from Day Oncology to come across and see if  she’d have any luck. Of a 5ml syringe, with brute force, she managed to get just 0.5ml to push through.

Rafa already had numbing cream on his arms and hands - waiting for a peripheral line. However, after 4 hours of nothing happening, they took the cream off. Useless after that amount of time

Eventually they got a Dr from the ER to come up to insert a canulla and as per usual - it blew his vein!! As the numbing cream had worn off many hours before - he felt every excruciating bit of it!!

Dom refused to let then try again without applying a new patch of numbing cream!! 

The Head Nurse decided to give his port one last try and as soon as she pushed the saline through - it unblocked!!! Hallelujah!!!





10th December

Due to some "politics", Rafael was admitted to the ward today instead of tomorrow. Not sure what's going on there, but the nurse who called today wasn't very happy ;-) 

Anyway, it means they will be able to get started early tomorrow morning with the pre hydration

About 10 am they are planning to start the stem cell infusion. After a few discussions, Dr Michael changed his mind and we are now using the cells that were harvested in September (~3 million).

The actual procedure is simple. They just run the cells through his port, like a normal transfusion.

Rafael has to stay in hospital until his urine returns to a normal colour

He also has NO white cells, so please pray that he doesn't get any fevers in the next 2 days, otherwise he'll be stuck there for weeks

Today his BFF spent the afternoon doing normal "kid stuff" (aka Minecraft)

"During the cell infusion, you may notice a garlic-like odour and taste. The cause of this odour is the preservative DMSO, which is used during the freezing process to prevent ice crystals from damaging the cells. The odour, which may be detected in your breath, urine, stool, saliva, and perspiration, will be noticeable to those around you for one to two days after the infusion and will then disappear.

Additionally, your urine turns a reddish-burgundy colour following the infusion. This is due to the painless passing of red blood cells that may have been contained in the stem cell infusion. Your urine will return to its normal colour in one to two days."




9th December

Another meeting with Dr Michael to plan for Rafael’s stem cell return this week. Prof Hicks believes it’s too soon to return the cells as there is still a lot of radiation “floating” around :-( 

I think RCH are being over cautious as they’ve never used this type of treatment before and don’t really know what it will do to Rafael’s bone marrow.

8th December

It’s the first day of school holidays and we were at RCH for a very long day :-( 

Both platelet and blood transfusions needed. 

Unfortunately, Rafael had an allergic reaction to the platelets, sneezing, itching and puffy eyes :-( 

They gave him some medicine to stop the reaction and he managed to sleep. The infusion was slowed down, so an even longer day  :-( At least we had Gabriela to keep us company :-) 







5th December

Today was Gabriela’s last day of junior school ;-) I can’t believe she will be in high school next year! Where have the last 7 years gone???



4th December

Platelet transfusion today and another clinic appointment with Dr Michael.

He also received a very special gift from Koala Kids :-) 



3rd December

PEG injection to boost white cell count

2nd December

Rafael had a SECT/CT scan at Peter Mac today. This is to check the dosimetry to see how much of the radiation went to the tumours.

Then it was back to RCH for a clinic visit with Dr Michael. 



1st December

Last day of chemo today :-)

Yesterday they checked his blood counts and we knew that he'd need a platelet transfusion today as well. We were worried that he'd spike a temp and have to be admitted!! On top of that, he has a cold and runny nose :-( 

Yeah - NO fevers today :-) 


His Hb is getting lower, so he's booked in for a blood transfusion on Thursday. :-(