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.

A word from an Adult HeartKid - Dr. Michael Toon

I met Dr. Michael Toon through HeartKids Qld when Nigel and I were involved in putting together the photographic financial year fundraising calendars.  He is an Olympic medalist and a Doctor at the Mater Hospital in South Brisbane, using the knowledge and life skills he gained as a 'HeartKid' himself to help others as best he can, with an understanding of how lives are affected by illness, that perhaps some in the medical profession don't have themselves.

Michael is a huge inspiration to children with both congenital and acquired heart disease, proving to them that you can achieve so much in life, despite the limitations that have been placed on them.  I'm so please he agreed to be a guest writer for "Saving Jules".

"My name is Michael Toon and, like Julian, I have endured the challenge of childhood heart disease. I came into the world on April 11, 1979, as the second son of Peter and Lindy at the Royal Brisbane Hospital.

Like most others at that time, the first hint of my heart disease came after a few hours of lying peacefully in the nursery when I began turning blue due to the changes that occur inside the newborn’s heart to adapt to life breathing fresh air.

I was taken to the home of paediatric cardiology in Brisbane at the time, the Prince Charles Hospital and diagnosed following a catheter procedure with Transposition of the Great Arteries. It was to be the beginning of a long association with hospitals over the next three decades and counting. My diagnosis meant that the great arteries carrying blood to my body and lungs from the heart had formed the wrong way around, so my body was being starved of oxygen rich blood that was returning from the lungs. Kind of like a race-car refueling but being stuck in the pit lane.

A crude communication was established to supply me with life-giving oxygenated blood using an emergency catheter procedure to create a hole between the top 2 chambers of my heart. This kept me alive and well until I was big enough to safely undergo open heart surgery when I was nearly 4, again at the Prince Charles Hospital, by Dr Mark O’Brien who performed a Senning Repair to establish a working circulation from my heart’s misplaced arrangement. Dr O’Brien was already known to my father, Peter, through the world of sailing, where Peter had been a competitive yachtsman.

By this stage my family had followed my father’s job as an architecture lecturer to Canberra, where I was able to enjoy growing up normally with my brother playing hockey, riding my bike, skiing in winter and joining the Scouts. At the age of eight I experienced a common complication of my particular surgery when I developed dangerous fast heart rhythms and again had to undergo surgery at Prince Charles to implant a cardiac pacemaker in my belly and started lifelong medication to control my occasional fast heart rates. I had several reoperations on my pacemaker for lead malfunctions and eventually, when we had moved back to Brisbane, had the pacemaker implanted in the regular position in my shoulder in late 1993 when I was big enough.

Apart from the occasional battery change, I am on to my third, I have not had any major surgery since and remain mercifully stable, well and active.

Growing up I was very fortunate to be a part of an active family with understanding from everyone I was involved with to allow me to go at my own pace yet participate fully in everything where a young buy would find trouble and fun. Things began to get difficult for me as I progressed to school in Brisbane where sport became more competitive and I had been advised not to participate in contact sports or overexert myself following my heart palpitation problems.

Olympic Medalist

All of a sudden I was no longer content to be merely participating in organized sport, measuring my activity as I felt necessary, particularly as rugby, a passion in my family that my older brother Matt had eagerly embraced, was compulsory at my new school. I tried sailing, encouraged enthusiastically by Peter but never took to it like he had. Fortunately, Matt had taken up the sport of rowing at secondary school and Peter had noticed that the position of cox was suited to a small, confident, bright person and it might be something worth a try for me, as I was otherwise struggling to fit in. It turned out it was the perfect outlet for my competitive spirit and I pursued the sport through school and afterwards to represent Queensland and Australia, culminating in coxing the Aussie eight at the Athen’s Olympic Games winning the bronze medal. 

My next challenge following this was more study having completed a Bachelor of Pharmacy during my rowing years. My interest in my heart and familiarity with hospitals led me to studying Medicine at the University of Queensland and I now have the privilege of looking after patient’s of my own where I hope I can use my patient experience to better my care of those I am looking after throughout my career.

Dr. Michael Toon

I have been fortunate since becoming more aware of the nature of my heart condition to meet many like me of different ages and backgrounds who have been affected by childhood heart disease. I have found that while the problem is by no means unique, occurring at differing levels of severity in about 1 in 100 children, each person certainly is unique. All, however, share some common attributes.

I have seen an element of tenacity, courage and determination that is developed through the early challenge to survive and flourish. There is also the humour and resilience that comes from long hospital stays, multiple doctors visits and the possession of special cardiac arrangements that are variably understood outside of and even within the world of paediatric cardiology.

I know many younger patients that are the beneficiaries of the outstanding work developed by many doctors over the past half-century to treat complex cardiac problems in the tiniest of babies. I am even more delighted to know many older patients that survived against the odds at times, being the first recipients of new and amazing surgeries, enabling the children to follow them more safely undergo them and be inspired by their success.

I am very aware of how lucky I have been, even as I have had the most unlikely chance outcome of being born with my particular, serious, heart condition.

I have been fortunate to strike a balance in my life with all things to do with my heart and always encourage others like me to do the same. It is essential to embrace life to the full, find what you love to do and pursue it with passion but to maintain respect for your heart and its boundaries to enable you to do what you love to do more fully.

I have found the world of those affected by congenital heart disease to be a lot bigger than I imagined. I am constantly amazed by the stories of the patient’s, doctors and parents and reassured that support is never far and delighted if I have ever been a help to others."

As A Mother, Do You Know?

This post is a follow on from “You don’t look sick”  What the hell would you know?  I wrote this in response to a woman using the disabled car park at the kids’ school because her son had a broken leg.  When Nigel told me of her comment to him of, "If you don't want to share, get here earlier" it got this running through my head.  Please, share this with your friends . . .    


As A Mother, Do You Know?  By Coleen Summers

As a Mother, do you know what it's like to fall in love with someone in an instant?  In that moment you first see their tiny face, hear that beautiful cry, feel that wonderful warmth and smell that unique 'I'm your baby' smell?   

As a Mother, do you know what it's like to wonder how you could have so much love for such a small human being?

As a Mother, do you know how it feels when your baby smiles at you for the first time?  Laughs their first laugh?  Takes their first step?  Starts their first day of school?  Writes their name for the first time?  Draws their first picture?  Reads their first book?

As a Mother, do you know what it's like to to swell with pride when a stranger tells you how polite your child is?

As a Mother, do you know how it feels to be completely in awe of their amazing hugs?

As a Mother, do know what it's like to wonder why you sometimes feel like crying when they say to you, "I love you, Mummy"?

You do?  So do I.

As a Mother, do you know what it's like to hear your child scream "Mummy!" and feel your blood run cold?

As a Mother, do you know what it's like to race to catch your child as they collapse to the floor?

As a Mother, do you know what it's like to live in uncertainty because no one can tell you what's wrong with your child?

As a Mother, do you know how it feels to have the term 'Mortality Rate' used in reference to your child?

As a Mother, do you know what it's like to wait in a hospital waiting room while your child undergoes heart surgery, and watch the other parents be called to the Recovery room, while you sit there, still, 45 minutes past the time the doctor's said they would be finished by?

As a Mother, do you know?

I do.

I know what it's like to put my hand on my son's chest every night before I go to bed, just to reassure myself it's still beating.

I know what it's like to feel like crying, simply because I've heard the words "Just 5 more minutes, please, Mum" when I've woken him up in the morning.

I know what it's like to hesitate before going into my son's room when he's slept in, because . . . "What if?"

I know what it's like to see friends lose their babies, their children, and to feel guilty because "There but for the Grace of God, go I."

I know the feeling of despair when my son tells me, "I don't want to wake up in the morning.  I want to be with God in Heaven.  Then I won't be a heart kid anymore."

I know what it's like to live every single day in uncertainty.

I know what a broken heart feels like.

As a Mother, I know.

Precious Hearts

If you have ever had to occupy a child in hospital, then you will understand what a life saver this gift was to us!  Julian had been booked in for his surgical procedure – creating a hole in his heart (in effect, an ASD – Atrial Septal Defect) and putting in a stent to keep it open - on Wednesday 3^rd August, 2011.  He spent the day fasting (and didn’t complain once, I might add – colour me surprised!) and entertaining the little 4 year old boy in the bed next to him who was due to have a Pacemaker -  is ‘put in’ the wrong way to word it?  Unfortunately, there was a complication with the procedure before Julian’s and the specialists opted to postpone Julian’s until the next day.  Nigel and I were fine with that, and Julian just wanted to chow down!

In my previous post of “Too long to diagnose, almost too late”, I briefly mentioned a charity called ‘Precious Hearts’ and that the nurses on the Cardiac Ward gave Julian a gift from this particular charity, which was a bag of puzzles, games, etc, as a reward for doing so well and keeping young Aodhan occupied and happy until his surgery.  

Did you know that 1 in 100 Australian babies are born with Congenital Heart Disease, and chances are, you may know one; my daughter Ella-Shae and youngest son Boey, both have CHD’s (hopefully it will repair itself as Ayan’s did), and Julian has an Acquired Heart Disease, which means that he wasn’t born with it, it developed as he grew.

Precious Hearts is a wonderful charity that gives these children a reason to smile and relax while in hospital, and also supports their families who are always and forever by the sides of their children.  It’s founders know firsthand what children with CHD go through.  A hospitalisation can last as little as a week, and as long as several months.

Children are extremely restricted after open heart surgery, their movements are limited and most of their days are spent in bed or in a chair; they have drains that are required to stay in place after surgery.

Precious Hearts provides Care Packages to children recovering from heart surgery, a gift which lifts their spirits and helps them pass the many idle (and boring!) hours spent during their recovery.  They are age appropriate – Precious Hearts caters for birth to 16 years of age - and filled with items such as colouring and activity books, pencils, textas, crayons, story books, puzzles, toys, the list goes on and on.  The Care Package program is running at The Children’s Hospital Westmead, where there are close to 1000 heart procedures performed each year.  The Care Packages are kept on the cardiac ward and distributed by nursing staff when the children return from the Intensive Care Unit (ICU) after their surgeries.  Care Packages are also sent out every week to children in hospitals all over Australia.

Each bag is packed by a Precious Hearts volunteer, no two packages are ever the same, and a lot of care is taken to ensure that all items are suitable for the age of the child who will receive it.  This is the Care Package that Julian received after his procedure was postponed: 

Precious Hearts is operated entirely by a handful of volunteers who have all been personally affected by CHD and are driven by their wish to extend a helping hand to others families in the same situation.  They work hard to raise funds every year, all year round, and volunteers also work hard to raise awareness of CHD within the community.

So, how can you help?  There are many ways to help Precious Hearts get these sanity saving Care Packages to children (and parents) who desperately need a bit of distraction in their lives.   

*  You could organise a Donation Drive with your local school, and it’s the perfect way to fill up those bags – although they do ask for only new items to be donated.   

*  Start a Coin Collection at work,  donate a voucher for a food outlet, or even fuel.  Precious Hearts even gives iTunes vouchers to teenagers stuck in a hospital bed!   

*  Sponsor a Care Package for $30 and it will be given to a child in your name.  

*  If you would like to help out with a cash donation, all donations over $2 are tax deductible.  You can donate on their Give Now Page:  http://www.givenow.com.au/precioushearts

Precious Hearts is a wonderful charity, and they are helping our young Heart Kids enjoy a bit of fun and time away from their worries, at a time when life could overwhelm them.  Head on over to their Facebook page to read about all the families they have helped out:  https://www.facebook.com/preciousheartspage?ref=ts&fref=ts

Julian’s stay in hospital for his surgical procedure was a very stressful time.  Precious Hearts helped to take away a lot of the worry, and boredom, and made the rest of our stay so much easier.

Thank you, Precious Hearts, from The Summers’ Family.