Just Breathe

I'm not sure what words will describe how I'm feeling right now, but I did feel the need to get all this out, even if it is extremely personal.  Actually, I do know what words will work.  I just can't repeat them in polite company.

I have found it harder and harder to hold on to my emotions these past few weeks.  I'm sure Jules can see the worry in my eyes whenever he gets out of breath, despite my best intentions to hide it from him.  I'm trying desperately to stay calm when he collapses to the floor, resorting to pathetic jokes about how out of shape I am while I put my arms around him from behind and help him to stand up.

When I think about what's coming up, my heart races.  I feel sick.  My hands tremble.  So does my chin.  Hell, my whole body does.  My throat gets tight and starts to ache.  But I grit my teeth and swallow it all back down.

Because Will and I only cry when Julian's gone to bed.  He's not supposed to be our rock, and he's not supposed to see our tears.  We can't put that responsibility on him.

Dammit.  It's not fair.

A few months ago, while Julian & Will were in New Zealand - thanks to the generosity of a number of people - we found out that there were a few locals getting quite nasty about us because we had started a GoFundMe page for Julian to travel to New Zealand.  To fulfill his big dream before starting 'Veletri'.  One of the things that was said was that we "always had our hands out, just because we had a 'sick' child".  There's a long story behind that.  I won't bore you with the details though.

If only.  If only he was just 'sick'.  I would do anything for just 'sick', instead of terminal 'terminal' and 'incurable'.

You know, on a day to day basis I can usually ignore the fact that my son is dying, bit by bit.  One heartbeat at a time.  Most days, it's easy.  Julian looks 'fine'.  He's got great colour.  He growing so tall, and his feet are bigger than his Dad's!  He's funny, he's a ratbag, he's so much fun to be around.

And then, out of nowhere, he goes pale.  He struggles to breath.  His heart pounds so hard that it vibrates the sleeve of my own shirt when I put my hand on his chest to check his heart rate.  His heart races so fast I can't keep count of the beats.  He collapses to the floor and can't get up without help.

He wakes up out of breath.

I'm just happy he wakes up.

Jules has gone purple!

 

Why?  Because it's Pulmonary Hypertension Awareness Month!

11.5 years ago, my husband and I were told this strapping young man (who is turning 15 next week) only had between 2 - 5 years to live when he was diagnosed with IPAH at just 3.5 years old.  He continues to fight with everything he has, so what else can we do as his parents but fight with and for him too?  Julian is an awesome - although somewhat irritating at times - big brother to his 2 little brothers and his little sister. 

He is a ratbag, he is hilarious, and he - like every other teenager his age - is trying to figure out where he stands in this world. 

He is my hero.




Next Thursday, on the 26th November, he will be going in to the Lady Cilento Children's Hospital to have a PICC (Peripherally Inserted Central Catheter) line put in.  He'll be coming home that day so he can spend his birthday - 27th of November - at home.  On the 30th November, he will be admitted to the LCCH for 2 - 2.5 weeks to go on a medication called 'Veletri', which is administered through the PICC line via a 24hour pump.  My husband and I have to learn how to mix his medication, change the medication cassettes, change lines, change dressings, not to mention learn and understand all about this new medication.  Can you believe we have to buy a cupboard to put all his medication, lines, dressings, etc in????  We will be away from our other 3 children for this time, and my MIL will be staying with them so they can finish off their school year without too much disruption.  Thankfully, they go to an awesome primary school with awesome staff and teachers!

So, can I ask you all to 'Like' & 'Share' my Facebook page - Saving Jules​ - to help us to raise awareness of this terrible condition.  Follow Julian's journey with IPAH and have a bit of a laugh at his antics.  You'll be amazed at how he faces each day.

Straw Challenge

I read about this great idea to help people understand how Julian feels each day, so I would like to present a challenge to you all!

I would like you to take a straw and breathe through it for a few minutes. You might think, oh that's easy! But it's not. Keep going. Little bit more. Little bit more. Are you starting to struggle? Are you breathless, do you feel an ache starting in your chest, even your stomach?

This is how Julian, and other PH, PAH & IPAH sufferers feel. Every. Single. Day. No break.

Now, take the straw out of your mouth. Feel a bit of relief? Unfortunately, Julian never gets to feel that, never gets a break from breathlessness. It's just a matter of how breathless he is, not if he is or isn't.

Let me know how you go!

Brave Warrior

12 months ago, the world lost a star that shone so bright that in the time we all took to shelter our eyes from his brilliance, he was called home to the Angels.

On the 19th September 2014, at just 4 years of age, little Talon lost his battle with Idiopathic Pulmonary Arterial Hypertension.

I am sitting here in my lounge room, trying desperate to think of the right words to honour his memory, and it's hard.  How can I explain to you all the connection I saw between Julian and Talon?  How proud I felt watching my own 14 year old son finally find his own personal hero in a little boy 10 years younger than him?

Should I tell you about the first time I attempted to chat with this shy little human, and how I had to resort to bribery in the form of chocolate brownies?  Should I tell you how he looked at his Mum and Dad as if to say "Who on earth is this woman?  And can I have a brownie?"

Should I tell you about the too short amount of time Jules and Talon visited in the hospital, when they were both admitted on the same ward?  And how Talon finally came out of his shell when Julian found a way to connect with him?  Card tricks.  Clearly my brownies stood no chance again the magic of my own son!

Should I tell you how Julian's attention transformed from a shy little boy to a chatterbox?  How I felt a lump in my throat when he started to show me his fire truck?  How proud I was as a mother when I watched Julian teach him how to grit his teeth and growl "Just do it!" when the nurses had to do a blood test?  The connection I felt with his own Mum, while we watched our soldiers, both big and small, grinning at each other with the same glee only boys can grin with?  You know that cheeky grin I'm talking about.

Should I tell you how Talon's favourite nurse is Julian's favourite nurse?

Or should I tell you how my chest went cold and my heart stopped for a while, only to start pounding so hard I could hear it's echo in my ears when I read the devastating news that Talon had lost his battle, that his too small body had let go of this life?

I'm finding it so hard to find the right words to tell you all how it made me feel to watch him, in that short amount of time, fight with all his heart.  He was such a brave boy and an enormous inspiration to Julian, who said to me when we left the hospital "Mum, he's my hero.  He's so brave.  I've never met anyone like him, I can't wait to watch him grow up.  He reminds me of me at that age."

Talon, thank you.  Thank you for opening your heart to Julian.  Thank you for your friendship with him.  Thank you for being fascinated by Julian's card tricks.  Thank you for helping Julian to remember why he fights IPAH every day.

Thank you for the smile that reached your eyes, lit up the room and brought an answering smile to everyone's lips.

Thank you for showing us what it means to be brave and fight on even when we're too tired to join the battle over and over again.

Hit by a Bombshell

At Julian's last appointment of the day last at the Pulmonary Hypertension Clinic last week (Thursday 25^th June 2015), we had a bit of a bombshell dropped on us.  It was one of those appointments when I wished Will had been with me, but we have 3 other children in primary school and someone needed to be home for them when they came off the bus.  I’m just thankful my Mum had gone in with us this time to visit my teenage cousin who was in hospital for a ‘tune up’ for Cystic Fibrosis, because I was absolutely shell shocked when we walked out of our final appointment.

Exhausted after a day of testing

Long story short, sometime between September and the end of the year, Julian will be started on a medication called 'Prostacyclin', which 'inhibits platelet activation and is also an effective 'vasodilator'. It will be given through a PICC line or a Hickman line.  As I understand it, this used to be a 'last resort' medication, but Julian’s cardiologist has been in contact with other specialists in the field, and it is now thought it is a far more effective preventative, rather than a last resort, as there is no guarantee how effective it would be when people got that sick that they had no choice but to be put on it.

At first, Julian was on see-saw of emotions, ranging from “At least I will feel better” to “You would all be so much better off without me, look at all the problems I cause."  Now, he seems to be very accepting about it. 

This is going to be such a huge lifestyle change for all of us and there are so many things I want Julian to experience before he has to start on Prostacyclin - which will be very restrictive to what he can and can't do. I want him to go to town on all the things he won't be able to do once he starts. New Zealand. Water parks. New Zealand. Roller coasters. New Zealand. Swim with dolphins. Did I mention New Zealand???   As if Julian doesn't miss out on enough of life, now he will be even more restricted.

This is completely unexpected for us, and not something you can ever plan for. We have done our best to make sure we can do everything together as a family. Some of you may not know, or may not realise that Julian's condition - Idiopathic Pulmonary Arterial Hypertension - is terminal. That means it will kill him. Not might. WILL. It's not a matter of if, but when. This is why we want to get as much done for him as possible.

Our family is so appreciative of all your support.  Julian especially loves the messages of encouragement he receives from you all.  Keep an eye out for a blog post from him, to all of you, letting you know how he felt, how he feels now, what he will miss and what he’s looking forward to.

Recording Life

On the way home from the new Lady Cilento Children's Hospital late Monday afternoon, Julian was being his usual self in the car – and by that, I mean a little bit nutty.

So, I told him he should video himself more often – record his life – and this is what he came up with!

 

Introducing Julian!!!

Well, we’ve had a pretty crappy year this year so far.  The last few months we’ve spent packing and moving, which was not a lot of fun for any of us.  On the day of my last post (in fact only a matter of a few hours later) my cousin passed away unexpectedly, and I lost a very good friend to Pulmonary Hypertension a few weeks later.  My Nana’s health started to deteriorate quickly after the loss of my cousin and in March she sadly passed away at the wonderful age of 90-almost-91.

This morning I woke up with a strong feeling that I really needed to get back into the swing of things with Saving Jules and today I really wanted to introduce you to Julian himself, and the kind of person he is.

He loves to read.

With his favourite author, John Flanagan

Kicking it back with a book

 

He's dramatic.

Oh, the humanity!

 He’s artistic.

Fighting boredom at a clinic

He’s loving and affectionate.

Cuddles with Omar

A new cousin

  He’s a risk tasker.

Climbing a Pandanus Tree at Fingal Head

 

An Essex-Lopresti fracture

 He loves to make people laugh.

          

 

 

And best of all, he’s ours.

With his Dad, Nigel

 

With his younger brothers and sister

Julian, Ayan, Ella-Shae & Boey

Julian & I