Some people come into our lives and quickly go. Some stay for awhile, leave footprints on our hearts and we are never, ever the same.
This page is a dedication. A dedication to the life of a young woman, her family, her friends and her illness.
Before you begin reading this page, I have to warn you that there is some material in here that may upset, disturb or offend some people. It is about the courageous struggle and eventual end of a young woman with Cystic Fibrosis (CF) There are some sensitive photographs and some very sad pages.
It is a hard journey to take and at times, may even seem like a dream. God knows it did to me at times. But it is well worth taking. You won't regret it.
Her name is Julie...And she is An Angel Among Us
Julie Anne came into the world at 11.10am on Friday, the 28th day of April, 1976. She weighed in at just 6lb 13oz and wasn't given much of a chance of survival. She was only given a slim chance of survival because of a blockage in her stomach. The doctors gave her a 50% chance to live, whether or not she was operated on. Our parents chose not to go through with the procedure and Julie pulled through. She set the standard right then and there of how her life was going to be. A struggle.
She was almost like a doll. Small, pale, with huge eyes and dark hair. People used to tell my Mum that she looked like my toy doll. And she did. She was a beautiful baby. She would remain beautiful her whole life through.
After Julie's entrance to the world, she remained reasonably healthy for the first six or so years. She was diagnosed with having CF almost straight away. She didn't start to get sick until she hit primary school...Then she was almost always sick. But she didn't let that stop her.
She had this cheeky little face and a devilish smile, and these eyes that twinkled at you mischieviously. She was always telling a joke and always up to something. That never stopped.
She was popular at school. She had lots of friends and they loved her. Who wouldn't want to be around her. She was beautiful and smart and funny and sweet. Her and school didn't get along though and she decided she'd had enough before she finished.
Because she was in hospital so often, she made friends with everyone there...And I mean everyone. Doctors, nurses, patients, support staff...Everyone loved her. She had more of a social life in hospital than she did out. I suppose that was because she was always there. Younger kids looked up to her. The nurses and doctors admired her. She was courageous, gutsy, determind, strongwilled, stubborn and tough. She was also endearing, sweet, funny, talented, beautiful and unique.
There were a few times we thought we were going to lose Julie. She just seemed to get so sick all the time. She pulled through every time though and I began to believe she was invinsible. I never thought I'd lose her. She always managed to get through it and I came to expect that of her.
We went through alot Julie and I. We used to play together when we were little. We watched our mother re-marry and then got another little sister. We moved houses a zillion times together. We went to school together. We played softball together. We got lost on a bus together. We fought like cat and dog. We saw the snow for the very first time together (We also picked up Hepatitis A and spent six weeks in a hospital room together!). We watched our Dad re-marry and got another sister and brother. We hung out together. We did lots of naughty stuff together. We lost friends together. We lived together. We cried together. She took crazy videos of me...And everyone else! She nicknamed me Jordy...I nicknamed her Rulie...And Gelfy (Long story involving the movie The Dark Crystal). She put up with me. I put up with her. And that's just the way we liked it.
She loved animals. She trained to be a vet nurse. She would have been good at it too. We used to ride horses. She won Gymkana's, she was that good. She owned many pet rabbits that she used to bail up in corners and take photo's of! I still remember her very disgusted tone if she saw you step on an ant or snail or spray a fly or spider to it's death. She was apalled! We bought our puppy in February of 1995. We called her Heidi and she was our pride and joy. Julie fell in love with Heidi and the puppy became her surrogate child. She remained Julie's best friend right up until the very end, gaining special allowance up to the hospital, where she would lie on the bed quietly with her master. It was a beautiful, heartbreaking sight.
These are just a few thoughts about Julie to let you know what she was like. There's so much more to know about her. She had so many facets of her life. You will get to know her better as you sift through this page...And you won't regret it. Not for one second.
Julie had always been sick. She had never had a normal life, it was mostly spent in hospital. That was normal for her and she coped really well. There was no gradual decline in health for Julie. There was no pattern for her many infections. She always seemed the same, sick and frustrated, but happy and easy-going. I knew she was getting sicker, I could just tell, but there was no physical sign, because she remained looking the same. To glance at her you would think "Skinny kid with a nasty cough". That's the way it is with CF.
I never heard Julie speak much about transplants. Sure, she had seen other patients with CF travel across for the procedure...Some came back, some didn't. Some are still alive today after transplant...Some aren't. Her opinion, when I did speak to her about it, was that she didn't want one. That was her choice. It stunned me when, one night, she told me that she wanted to have a transplant. I had never seen her do a double take like that, and that's when I knew things with her were really serious and she had been thinking about her own future alot. I supported her, 100%...As did everyone else.
It all happened so fast. She told me of her decision in August. In September, she had an appointment with the Melbourne Transplant Team and they accepted her and started making arrangements to get things underway. In October, there was a story done on the nightly news about her living with CF and going for this transplant. In November, my Mum and Julie packed up the house they were living in. On the first day of December, they boarded a plane to take them to Melbourne.
It was lot harder than we all expected. I didn't expect to miss them so much. I knew I would, but I didn't expect to be in tears when they left...This was a happy occasion and I would speak to them every night on the phone. I felt a bit lost in the first couple of weeks, so I can only imagine what they were going through. It must have been hard on them both to be in a strange city and not know anyone. They only had each other for support and stress relief and company. Mum was having to take Julie up to the hospital everyday for tests and to go to the gym and then there were the admissions to hospital when Julie got an infection, so Mum would have been alone. I don't envy either of them for doing what they did, but it was a decision on both their parts...And that wasn't going to stop them. They made friends, found a nice place to live, hired some furniture and life went on as normally as possible. Then all they had to do was wait for the phonecall...
They didn't have to wait too long. The phonecall from The Alfred to Julie saying they had found her some matching lungs came only a few months after she arrived there. Organs are pretty hard to come by, so it's not unusual to wait over a year for a chance at transplant. I remember that night...I had been on the phone to Julie for a few hours. We were just chatting away about stuff, her impending transplant included. Apparently as soon as I hung up, the phone rang again. Julie thought it was me being a pest...She couldn't have been more wrong. When the phone rang back at my end, I was in bed. I could hear my boyfriend at the time saying "Yeah right...Are you for real...Oh, shit, hang on I'll get her" He yelled out to me..."Julie's got lungs, she's on her way to the hospital!" I jumped out of bed and ripped the phone off him "Hello? What? Are you serious! Oh My God! Oh, Rulie, I'm so happy for you! I love you...Goodluck...See you when you have new lungs" The whole conversation was a mess of giggling and disbelief and relief and absolute joy. Needless to say I didn't sleep well that night. 7 hours later, Julie was in recovery...With a new set of lungs that were going to give her her life back.
The next morning, my Dad and I were on the phone, organising our trip over to see her. That night we were on a plane, on our way to her. We were so excited! Neither of us had slept very well with all the excitement. We arrived in Melbourne at about 5am. We met Julie's boyfriend at the time and my Mum at the airport and were driven straight to the hospital to see her. She was still in Intensive Care, but, My God, she looked fantastic! She was breathing on her own and semi-conscious. We all stayed only a few minutes and then left her to sleep (And to get some sleep ourselves). That afternoon she was moved back to the normal ward and we went up to see her. She was sleeping, but looked amazing for someone who had been through what she had. Over the next few days we watched her look better and better and better. Things weren't all smooth sailing though. There were a few bumps. Julie's infusaport, that was feeding her the antibiotics, anti-rejection medication and pain coverage, was cut during the operation. That meant that there could be some complications invovling infection and rejection...Apart from that, the fact that she was in pain didn't help things much. She went back to theatre as soon as she was able to get a new infusaport. The doctors also scraped her vocal chords, so the voice she did have was barely audible. They were the only bumps though and she got over them. You could see Julie was tired, and a bit frustrated, but she was happy...And had new lungs...She was on her way.
Julie's Transplant Story Through Her Eyes
Julie arrived at the Perth Domestic Airport on July 21st 1999, finally ending her stint in Melbourne. She spent, all up, 7 months there and her homecoming was awaited with much anticipation. She was met at the airport by friends and family with flowers, hugs and kisses and lots of love.
I guess she was a little over whelmed. I would be too if I had been away and had such a life changing operation. She looked different too. The anti rejection drugs had made her face swell. The rest of her was still thin and frail, but her face was puffy and big, and was very noticible in relation to the rest of her. She was a little self conscious and shy.
She left the airport with my Dad, who was having her stay at his house until Mum could organise renting one for the both of them. She stayed at Dad's for three months, until she moved in with me at the end of October. It was a bit odd getting used to living with my sister again, but after we settled in, it was great.
Julie got really sick while she was at Dad's. She got a really bad infection and her lungs started to reject. It was thought she had pneumonia, just as they did when she was in Melbourne, but she was OK and after a very scary few days, she was given the all clear and started to recover. That was her first illness after getting back to Perth, but it wasn't to be her last.
Christmas was fantastic! We put the tree up and spent Christmas Eve with my Dad's family. We spent New Years Eve apart, but I know she had a blast anyway. I heard tales of her drinking too much bourbon, her favourite, and getting home at all hours of the morning. The infamous "Screaming Mel" video was taken around this time, and many other antics were gone through, including one very drunken 6am start, when she fell through the door and loudly informed me that she was going to watch Kia play drums as some friends layed down a CD...Very Loud!!!
I got used to the very late nights/early mornings, the tapping of the keyboard keys, being quiet in the mornings so I didn't wake the sleeping Julie. She pulled her weight by doing the dishes and keeping her room semi tidy. It was all I asked of her. I knew her ways. I was quite happy for her to stay as long as she wanted!
In the beginning of February, Julie took a trip that she probably would never have been able to take if not for the transplant. She went to both Sydney and Melbourne to finally meet the internet friends she had formed such a bond with. The friends that she had made had carried her through alot. Without them her time in Melbourne would have been more lonely. Her nights, back in Perth would have probably been filled with countless hours of mind numbing telecommercials. I know she had a fantastic trip and finally put faces to names. That would have been the highlight of the year following her transplant. Nothing could have topped it.
Julie moved out of my place not too long after she got back from her holiday. And not long after that she was back in hospital. More rejection and infection. She celebrated her one year anniversary of her new lungs in March. She was released just before her birthday in April and was back in hospital just after it. She never left hospital after that.
I spent a month in hospital with Julie in June. It was then that I knew things were declining. She didn't get out of bed much. She wasn't getting better and she just didn't look the same as she had a few months ago, before she left for her holiday. The spark had gone out of her, I think the fight was getting to be too much and things were never the same. She spent alot of time talking with the doctors.
She called a meeting, with me, our Mother and our social worker, Carolyne. I knew it couldn't be good news. She told me that she had been told that she was able to have a second transplant. Because of all the damage that the infections and the rejection had done to her lungs and because it wasn't that long since the first one, she was applicable to have another. The chances of her making it were only 50-50.
She told me that the doctors only gave her 6 months left to live and that she was dying. I sat there with tears streaming down my face and she turned to me and asked me if I wanted to say anything. I burst out crying and screamed "This is so unfair! I'm so angry that this is happeneing to you! I can't believe this is happeneing to you!" She looked at me with those eyes of hers and told me she loved me.
Julie said no to the second transplant. She would much rather spend her last 6 months with her family and friends rather than risk going to Melbourne again and maybe not coming home. She was tired, and, as she told me later, had only just made it through the first transplant, both physically and mentally. She had had enough.
I respected her decision. She was strong enough to make it and I was going to stand by her no matter what. I decded to make the last few months she had, count. We hardly spoke of her decision again, except for a few times when we had late night heart to hearts. All I wanted was to spend time with her...Time that I was running out of.
Julie started to go down hill pretty quickly. It wasn't that she gave up, I think that CF was starting to take control. The doctors had told Julie it would be a good idea for her to walk a little bit every day, to try and move some secretions and build just a little bit of muscle in her legs so she could start to move more. We went for a small walk every night for about a week and a half. After that, she just couldn't do it. She rarely got out of bed after she stopped walking, exept for showers and bathroom stops. She was just too sick.
Her weight plummeted. She never weighed much, but the last time we weighed her she was around 35 kilograms. She was to lose more before she passed away. I would give her a moisturising massage after her showers when she wanted me to and it was devastating. I could feel every bone under my hands and could see the triangle of her pelvis and tailbone. I can only imagine her she must have felt. Having no weight behind her didn't help her chances of fighting the infection in her body either.
Julie's headaches began to get worse. Some of it was due to with the build up of carbon dioxide in her body. Because she couldn't take deep enough breaths, she couldn't get enough oxygen into her system or expel the carbon dioxide. By turning up her oxygen and her having a sleep seemed to help the headaches ease, but they never quite went away.
She was put on morphine injections. Morphine isn't a painkiller. Morphine sends signals to tell the brain there is no pain in the body and to carry on normally and not to send the body into stress. Having Julie on morphine was for her own peace of mind, so that it relaxed her lungs and allowed her to breathe as normally and deeply as she could.
My parents and I took turns in staying with Julie so that she wouldn't be alone. She was scared to be by herself. I don't think I'll ever know the real reason why, but I guessed it just made her feel more comfortable knowing someone was there. She was also quite embarrassed because the morphine injections had a habit of putting her to sleep mid sentence and she didn't like being alone with her visitors when she could fall asleep at any minute and leave them sitting there for an hour or so.
Julie cut right down on visitors. It took too much out of her and left her exhausted for the rest of the day. No one came out with out ringing first and arranging a time that was good for Julie. The nurses were given instructions that if there was no one in the room with Julie, no visitors were permitted. The visitors that she did have didn't stay too long. The last visitors she had were her family and closest friends to say goodbye.
We thought Julie was doing OK. We knew she was declining, but we thought it was slowly. We thought we had the full six months to spend with her, maybe more. She was talking about Christmas and our step-sisters wedding. She was still planning things to do and was excited about small things in the near future. She had her beloved Heidi come up at least twice a week which she loved. But it was drawing to a close way too quickly, and without our knowledge. Too soon it would be over.
A few days before Julie passed away, she seemed to be cruising along without any hiccups. We had gotten used to our routines and were used to the up and down ways that Julie had taken on. I had spent the Wednesday night with her, my Mum had spent the Thursday night with her and my Dad spent Friday night with her. A friend stayed with her on Saturday night. It was the last night she was conscious.
Mum got to the hospital mid afternoon on Sunday and Julie was asleep. She woke up very momentarily to tell Mum that she was sick. Mum reassured her, telling her that she was going to be OK. Julie looked Mum right in the eyes and said "No Mum, I mean I'm really sick." Just after that she lapsed into unconsciousness. I was called and told to come to the hospital at around 9pm. I arrived around 9.45pm, my Dad was not long after me. Sandi arrived later that night. We were told it didn't look good and she would probably not last another 24 hours. We sat with her until the end.
Monday was filled with family and very close friends coming to say goodbye to Julie. My baby sister, Cyrene, came up mid afternoon and stayed till that evening. Watching her with Julie was heartbreaking. She sat with her older sister and stroked her hair and held her hand and laid her head on the pillow next to Julie. She was devastated. We all were.
All the visitors we had had during the day had left. The four of us, being myself, Mum, Dad and Sandi had taken turns in having a sleep and a shower in an apartment upstairs. We were set to go into the next night.
Julie passed away at 10.20 on Monday night, the 18th of September. It was very peaceful and beautiful. Her room was full of people who loved her. Myself, her Mother, her Father, her life long friend in Sandi and one of her closest friends, Fiona. Mum was holding her hand and the rest of us were chatting quietly amongst ourselves. It was the most amazing time I had ever experienced, both heartbreaking and relieving. For her, it was finally over. The struggle she had was ended and for that I was grateful, but for us, it had just begun.
Heartfelt Tributes From Julie's Internet Family
On the 25th of September on a fine Spring day, Julie was laid to rest. The funeral was at 2.30pm at the Karrakatta Cemetary in Perth. She was cremated in her favorite pyjamas and her beloved pillow in front of hundreds of her friends and family. It was an extremely moving sevice.
As we entered the crematorium, Alanis Morrisette's "Ironic" was played. My Father, my Brother, my three Uncles and my Cousin carried Julies dark wood casket into the filled chapel. There were flowers covering the top of the coffin. Red gerberas, yellow sunflowers and white roses. The colours were symbols. Red for love, yellow for courage and white for peace.
Everyone who entered the crematorium was given a small booklet. It was as follows:
Cover
Inside
Graeme, Barbara and Melinda would like to express their deep gratitude and appreciation for your support, kind words and thoughts.
There have been many different aspects of Julie's life and we would like to show our respect by thanking you all.
To the staff at the Cystic Fibrosis Association, thankyou for your care and time spent with Julie. You went above and beyond the call of duty.
To the nursing staff at Princess Magaret Hospital, you watched Julie grow from a baby to a teenager and helped her through many difficult times.
To the nursing and support staff of G54 (formerly B Block), many of you were more her friends than her carers. Thankyou for playing such a big role in Julie's life and for the comfort and support you extended to both Julie and her family over these last few difficult months.
To everyone here today, and those who could not join us, thankyou for being a part of Julie's life.
She will be forever in your memories.
Back cover
Julie's family would like for you to join them in celebrating Julie's life at The Mighty Quinn
This will be a time for rememberance, stories and happy thoughts about Julie and her time with us.
The ceremony was conducted by Father Doug Davies, who was our childhood priest at Princess Margaret Hospital For Children. He knew her well and conducted the funeral with the grace and dignity Julie deserved. His first words when everyone was seated were: "Isn't it amazing how one person can bring so many together"
Our life long friend Sandi wrote Julie's eulogy:
On April 28th, 1976, a baby girl was born. She wasn’t expected to live longer than 48 hours, but the doctors delivering this devastating news to Graeme and Barb didn’t know Julie. They didn’t know that Julie would consider Cystic Fibrosis an adversary worth the challenge, that she wasn’t going to lay down and let CF dictate the terms of her life. Julie had things to do, places to go and people to meet.
There are many qualities that Julie had. She had courage, strength and a spirit full of mischievious ways, and you could be forgiven if you thought that Julie and her sarcastic wit existed simply to vex you. She had a strong sense of humour sparked by her bubbly nature. She had opinions that she had no hesitation in sharing, although sharing is perhaps a generous word and more apt would be to say that Julie had opinions that she put forth with an extremely loud, if unspoken, full stop at the end. Just as important, she had a kind heart and generous nature.
But qualities alone are not adequate to describe Julie. Her obsession with pyjamas started at an early age. In the 1986 CF camp video you have to watch closely to get a glimpse of Julie wearing something other than her pyjamas. It was a trend that continued throughout her life. Jlie would have been in her element had pyjamas been a required dress standard for formal events.
Julie ran her life using Julie Standard Time. Any efforts to counteract the forces of Julie Standard Time usually failed. And so we all learned to live and plan around Julie Standard Time.
One of Julie’s great loves was sport. While she may not have been able to physically participate in the sports she watched, she was an armchair connoiseur. Fortunately many of the sports she enjoyed watching fitted in neatly within the waking hours of Julie Standard Time.
Another of Julie’s great loves were animals, and in particular, her dogs. Whether she was taking care of their physical needs, talking about the explosive and somewhat smelly emissions that came forth from them, or simply curled up enjoying their company, George, Milli and Heidi were never far from Julie’s thoughts. Dogs, of course, were not the only animals that Julie enjoyed. All creatures, great and small, were welcome within her world. Especially horses, where Julie would combine two loves and watch horses in sporting competitions. After watching the Melbourne Cup at Flemmington Racecourse, Julie was delighted when Lee Freedman sent her a framed race photo.
In the last few years, Julie discovered a new love. A virtual world where she was free to perform physical feats within asterisks. A world where LMAO and ROTFL were acronyms that Julie used often. Her personality and charms shone through and she became an active participant in the lives of her on-line virtual family. They, too, discovered the strengths, courage, bubbly nature and mischievious ways which were uniquely Julie. Their special relationships were not just limited to the confines of a computer screen. Julie met many of her on-line family in person and spent many enjoyable moments with them
Julie showed a courage and spirit throughout her life as well as a brave determination to live and enjoy life, despite the cards that had been dealt to her. Her decision to move to Melbourne to wait for a new chance at life was nothing shourt of inspirational. She never let her disappointment with what was to become the eventual outcome affect the opportunity to enjoy those last months. She spent them as she always had…Watching her sport in her pyjamas, surrounded by family and friends, cuddling Heidi whenever she had the opportunity.
No matter where she was, Julie found friends to share her life with. People she could laugh and cry with. She also managed to find people to vex and she was always true to her ideals and aspirations. There were no comprimises with Julie. She either gave you everything she had, or she gave nothing.
Physically Julie has moved on. She is not alone. She had family members and many friends to greet her and help guide her on the path she now travels…To a final home, where all things Julie can come together. A world with a permanent connection to the Internet, a menagerie of animals to care for, including stables full of horses, which Julie is now free to ride. A world where pyjamas are required fromal wear. A world which runs on Julie Standard Time. A world in which Julie laughs without coughing. A world with no limitations.
My Mother wrote her piece for her daughter:
When I gave birth to Julie she was given 48 hours to live and I thought I was going to lose my little Buddha. But she showed me an incredible strength, courage and determination to go on.
At a very early age Julie had to make some very difficult decisions that would have stumped most people. But once again, that fighting spirit, that tenacious character would prevail and with that lovely, devilish smile which melted all hearts she would answer, when questioned, “I have it under control…Don’t worry”
To all her family and friends and the people who Julie came into contact with, whether it briefly or regularly, she brought happiness, as her personality was good medicine for the soul to be around. I sincerely thank one and all for sharing a part of your lives with Julie and giving her support.
I, for myself, would like to say thankyou, Jules, for choosing me to be your loving mother and friend and giving me the opportunity to give you care and guidance throughout your life. I also thank you for the wonderful memories you have left behind…The sad times, the tearful times and the precious thoughts of our time together that are mine to keep. I have peace of mind now, knowing that you are at rest with your loved ones and friends who have travelled on before you.
But the spirit of Jules will never be lost for it will live on in her precious, beautiful courageous sister Melinda…And, my dear Jules, I will treasure the 24 years we shared in a world where you were destined to bear a large cross which you bore with courage.
Shall love you forever my darling
Sleep well
And my dedication was read last:
Some people come into our lives and quickly go. Some stay for awhile, leave footprints on our hearts and we are never, ever the same.
She was my sister. My best friend. She called me Jordy. I called her Rulie. She was the other pea in my pod. I was blessed to have had her in my life.
Julie,
You left my life one week ago today. You left using only a few of your trademark characteristics. Grace, dignity, strength and courage. You also did it very much on your own terms. For a split second I wished you back, but to do that would be in vain, I know that you are better off where you are now…At peace.
Thankyou for being a part of my life Julie. I wouldn’t change anything that’s happened, for it made us who we are. We have shared hard times, sad times, angry times, happy times and even every day normal times. I don’t think there’s an emotion or feeling we didn’t share. I’m thankful for the bond we had, the time we spent together and every memory I have of you.
I will remember you as you were. Brave. Strong. Courageous. Honest. Caring. Sweet. Witty. I have many beautiful memories of you and they will bring a smile to my face when I need cheering up, or your voice will set me on the right track if I ever get lost. I know you will always be looking down on me. You will be my Guardian Angel…I feel blessed to have 3 Guardian Angels now.
I will never say goodbye to you Julie, you will live forever in my heart. I love you. I will miss you. Sleep well.
With all my love
Melinda
The congregation were invited up to place flowers upon the coffin and then sit for a few moments of reflection. Whilst we were sitting, thinking, "Cry Little Sister" a song from the soundtrack of the movie The Lost Boys was playing in the background.
Father Doug announced at the end of the ceremony that we would be moving to the Rose Garden to release balloons. I had a dream the night that Julie passed away that at the end of her funeral service, white balloons were released. I think, as usual, she was trying to tell me that this is what she wanted, so it did. As we all left the chapel, taking a balloon each as we left, Madonna's "Live To Tell" played out.
We moved to the garden, each with a balloon and they were all released at the same time. It was meant to signify the release of her soul, but I heard snickers and whispers all around me that the floating white balloons sailing off and getting smaller and smaller looked very similar to...I'm not going to say it, but just imagine hundreds of white balls with long white ribbons trailing after them, and see what you come up with! I guess it was Julie's way of lightening things up, and having the last joke.
A lot of the people who came to the funeral joined us at The Mighty Quinn, an Irish pub owned by one of Julie's closest friends, Fiona. The pub served as the perfect atmosphere for friends and family to share a story about Julie or just sit back and talk amongst friends. It was a wonderful wake, just the way we planned it and, I think, the way she would have wanted it.
On the 28th of April, 2001, the day of what would have been Julie's 25th birthday, her ashes were placed at Pinnaroo Cemetary. Before family and close friends she was placed amongst the animals she loved so much, beside a lake, in the bushy landscape with a plaque to commemorate her life. She is visited often, and never forgotten.
Thankyou for taking this journey all the way through.