Tuesday 30 June 2015

Blog: June 2015

30th June

The last of a Meatball Subway going down ;-) 



Dr Michael had the bone marrow biopsy results and once again, they are not good. They are showing signs of blasts (not good ones) and the doctors think it may be MDS after all. There is an “abnormal population” of CD45 cells. They are going to do more testing and analysis.

29th June

I ended up calling the hospital and speaking to the Fellow as Rafael’s pain is unbearable and the combo doesn’t seem to be helping. He keeps waking up at night asking for more.

She faxed a prescription to our local pharmacy and that saved us a trip into RCH.

Rafael is now on Oxycontin, Gabapentin and Steroids as well as Endone & Panadol for breakthrough pain.

We’ve stopped giving him the Pericatin as he’s already taking too many pills :-( 


27th June

No platelets needed today!! Woot



However we still need to wait to see a Dr to sort out Rafa's pain meds. She prescribed Temodal, but when I text Dr M later, he said that he’s not very keen on using that pain medicine. He offered some other doses of the current ones. Let’s see how it goes!


26th June

Rafael received a very special surprise today.

He spent most of the morning on the sofa with his heat pack and zonked out by the Endone. Just before his surprise arrived, he fell asleep!

His school principal had arranged a surprise visit with a few of his friends. They came in the school bus and stopped at McDonalds on the way

Rafael's good friend Kane came inside first and tried to wake Rafa up. Rafael was very groggy, but happy to see Kane. When I told him that Kane had brought something special, he saw the Macca's bag and said 'Lunch"!
Then he saw a few more of his friends across the room

He had so much fun chatting and catching up! It’s the one thing he misses most - his friends!!!!

Mr Barklamb knows someone who knows someone and they arranged some signed Socceroos gear from Mathew Leckie. He was very happy indeed!!

Sadly his friends had to leave to get back to school. It really took it's toll on Rafa and he spent the rest of the day in pain and on the sofa. I managed to juggle his meds and get him some relief xxx








24th June

An early start today for bone marrow & trephine aspirates. They took some today from the front of his hip as well - it hurts




Followed by a platelet transfusion

We met with Dr Michael and he wants to try Rafael on a cycle of Temozolamide. Rafael hates those 5 little pills - arghh!!!


20th June

Rafael's girlfriend sent him a selfie



Today Rafael had another infusion of Zolodronic Acid, hopefully this will relieve some of his pain!

19th June

After a more intensive review of Rafael's scans last week, Peter Mac requested an additional MRI to look at a cancer spot on Rafael's spine that might be causing the pain??

Dr M and the team at RCH requested an emergency MRI and the response from RCH was 12th August is earlier date to book him in!!! WTF??? Serious??
As I've said before, and will say when my voice can be heard "Thankfully we have team Pater Mac on our side" !!!!

They have managed to fit Rafael in today for an MRI ♥♥

We don't know if Dr's Tim and Rod will be able to review the scan today, but they will soon have an idea if that spot is the main cause of pain. If the tumour is pressing on his spinal cord, they will request radiation immediately :-( 


Rafael hasn't made it to school much this year, a few periods here and there. The majority of his time is spent at home or in the hospital. He is very bored and doesn't enjoy his days :-( 

Every week, when possible, his school sends a teacher to go through school work with him and catch him up

He also has a tutor who comes each week or 2.

Given all that he's missed this year, we are very happy to read his Semester 1 report

Way to go Rafa!!!

"Rafael displays a beautiful, genuine personality and he brightens up the classroom. He is well-mannered, kind and very considerate of others, always interacting with his peers in a friendly, positive manner. Rafael approaches all activities with a positive attitude and he strives to complete tasks to a high standard. He has worked extremely hard from home to keep up to date with the Year Five curriculum and his results reflect this enormous effort. Rafael is a delight to teach and an inspiration to everyone who spends time with him.”

Ps: He received a "Below Average" grade for Instrumental - I guess that's because he's never been to class

16th June

Bleeding gums + lips = guaranteed platelet transfusion



Rafael also had a blood transfusion.

We met with Michael and convinced him to put Rafael back on steroids as they always help to relieve his pain.

Rafael will stay on the Endone and Panadol around the clock.

15th June

A delayed start due to the machine having "Mondayitis" 

The news was not good today

Mums & Dads instinct’s know best!

Rafael's pain has been very different this last week, in totally different places to the “usual".

However, his back pain is very intense. This morning he told me it was 10/10
He woke me up twice during the night for a heat pack and Panadol

We were holding out hope that he really had just strained a few muscles !!!

Nope

Rafael has many NEW spots of cancer!! Spots that he hasn't previously had! The GaTate scan from Friday and to a lesser extent, the I124 MIBG today, lit up a lot!

We had to wait over an hour today for the PET scanner to warm up. In that time, he was in agony sitting in the waiting room. Finally we saw Emily and asked her to warm up Rafael's heat pack and I gave him some Panadol. By the time he came out of the scan, he was feeling much better

he had Oxycodone before we left home, but it's not helping much

We had a long discussion with Prof Hicks afterwards. Poor Rod - he's had to give us confirmation of Rafael's relapses 4 times now!!!

Yes - this is his 4th relapse

He still doesn't have a functioning bone marrow, so that rules out a lot of treatment options. We are meeting with Dr Michael tomorrow to discuss everything. He has also asked for an urgent MRI to view Rafael's ribs/vertebrae.

He is taking pain killers around the clock and we will probably add more tomorrow.

The advantage for Rafa is that he also has "Team Peter Mac" on his side and by his side, every step of the way!

They are urgently trying to fit him in next week for a "palliative" dose of Lutetium as this has always been very effective in helping with his pain. We just need to convince Dr M to allow it

We are in shock as Rafael was in such a good place in March! All these months without any treatment at all (due to his marrow) has allowed this insidious beast to take over yet again

And that is what it's been like every time that Rafael has a “gap" in treatment
I did ask Dr M if this could be caused by the stem cell return??

Those stem cells were harvested back in 2008 when he still had a lot of NB in his marrow. Scientists believe that any NB cells collected, would not survive the freeze/defrost process. However, it's still an unknown. After all, it only takes 1 cell !!!!

Anyway, that's a "what if" question, we will never know.




12th June

Rafael had a GaTate scan this morning and was in so much pain trying to get into a comfortable position while we waited.



We didn’t see Rod afterwards as Rafael has one more scan to go on Monday and we’ll see him then. 

Sometime, the people that come into your life, by chance, just blow you away!!!

Tonight Rafael had a very special paediatric massage, by a therapist who is also specialised in Oncology massage!!

There are no trained paediatric massage therapists in Australia, just infant massage.

When her own sister was dx with cancer 2 years ago, she trained in Oncology massage.

Next month she will attend more training in Sydney to become a paediatric oncology massage therapist!!!

An Angel walks amongst us 

11th June

Rafael made it to school for the photo!!!!



His counts yesterday were even lower, this means there is no chance of him staying at school for any extended time

He has been in a lot of pain since Sunday (leg & back) and can hardly walk
He has 2 days of scans ahead - tomorrow & Monday.

The pain is not his typical cancer pain, more muscular, we are still feeling positive, although we can't breathe!!!!!

SCANXIETY is in overdrive!!!

The scan on Monday is one he hasn't had before and we are very keen to see the images

10th June

Rafa's special friend sent him a gift, hopefully he'll make them and put on some weight



7th June

YAMS has a new Ambassador - Michael Thwaite who is the captain of Perth Glory. He sent Rafael his own jersey, signed :-) 


6th June

Just a quick platelet transfusion today

5th June

A few weeks ago we met with Rafael's Endocrinologist. We originally started seeing her so that Rafael could be prescribed Zolodronic  Acid infusions for his bone pain. He now has these every 4 months.

She is also a great doctor to see and discuss Rafael's lack of adrenal gland and his short stature.

This time - she was very unhappy with Rafael's lack of growth

In the last 12 months, he didn't put on very much weight and therefore didn't grow!!!

June 2014 - Height 116.8 cm (3.8 ft) and Weight 19 kg (41.8 lbs) 

May 2015 - Height 118.4 cm (3.8 ft) and Weight 20.1 kg (44.3 lbs)

Therefore she has prescribed another drug called Periactin which is an antihistamine. One of the side effects they found was weight increase
He started this week. It works to stimulate appetite and we are hoping that it can kick start his metabolism! Otherwise he might end up with another feeding tube

This drug only works for ~6 weeks. Once we see it wearing off, we can decrease the dose and try to stretch out the use for as long as 12 weeks if needed. He just needs to put on some weight!!!

His neutrophil count was really low again on Wednesday and that meant he couldn't go to school either

They have School Photo's next Thursday and since he's missed the last 2 years, I'm really trying to get him there

Rafael even had a very small hair trim today (just in case!)

2nd June


Yep, platelet transfusion as expected