Not all Superheroes Wear Capes

Our Angels & Heroes - Meet the beautiful faces of Childhood Cancer

Every one of these little angels and heroes have been through more in their young lives than anyone ever should.

Our Angels and Heroes

Bayley

Cancer

Look at this little Cutie! One of our Golden Octopus Heros.
Let's all stand together to find a cure.

Love Keely x

Bayley's Story by his Mum

Ringing the bell to signal the end of his cancer treatment, surrounded by family and friends, Bayley smiled shyly.

Behind that sweet smile, only those who have walked the long road to recovery alongside him could truly appreciate his strength and determination.

Dad, Jamie and Mum Teresa, described those events: “Three-and-a-half years ago, our lives got turned upside down when Bayley was diagnosed with T-Cell Acute Lymphoblastic Leukaemia.

“Before he was diagnosed, Bayley had been complaining of aches and pains, particularly in his legs. He had been having night sweats and generally he looked very run down. After spiking a fever, we took him to our local hospital – 23 hours later we were a long way from home when Bayley was admitted to the Royal Children’s Hospital in Brisbane.

“While the following days are a blur, we do remember being told that our son had Leukaemia, that the treatment was three-and-a-half years, and that we would be in Brisbane for a minimum of six months. Our reaction was, ‘How the hell are we going to be able to do this, particularly so far from our home, 1,800km away in the Atherton Tablelands’?

“Well, now we can say we made it. We ended up being in Brisbane for nine months of intensive treatment. During this time we observed the most amazing strength, determination, stubbornness and willpower of our six-year-old.

“And we are very proud to call him our son and our superhero.

“We came home and Bayley continued on maintenance treatment for a further three years. This had its own challenges as we tried to live our ‘new normal life’, and not be over-protective as well.

“During this time Bayley was taking oral chemotherapy tablets daily, IV chemotherapy monthly and every three months we would head to Brisbane for LP/IT Chemo at the Queensland Children’s Hospital. We have had our moments but we got there.

“Moving onto the next stage, Bayley will be closely monitored for a number of years.

“The Oncology Department at Queensland Children’s Hospital has a ‘Ringing Out’ bell for children who have completed treatment. Bayley has seen numerous kids ring this bell so it was wonderful to see him do it as well, and with so much happiness!

“When Bayley rang the bell we were filled with so much emotion that comes with a long journey. It is with great relief and gratitude that we can say we have made it to the end of treatment, particularly when we know so many who have not been as fortunate.”

Bayley’s parents, twin brothers, grandmother, aunties and uncles, the principal from his local Malanda State School and staff members from many departments of the hospital attended the bell ringing on Tuesday 18 July, 2017.

Darcie

Cancer

Zavier

Cancer

Cleo

Cancer

Kael

Cancer

Riley

Cancer

Haylea

Cancer

Caitlin

Cancer

Tobi

Cancer

Anthony

Cancer

Matty

Rhabdomyosarcoma

Rhiannon

Osteosarcoma

Luke

DSRCT

James

Hepatoblastoma

Our beautiful Golden Angel Octopus Hero we honour is the amazing James. Thank you to Gail and Richard for letting us honour your beautiful boy.

Jame's Story as told by his Mum

On the 7th of February 2011, James's life was turned upside down. At only 5.5 years old he was diagnosed with Hepatoblastoma or in easy terms, liver cancer.

He'd only been at school for one week when he was pushed in the playground. A few days later, he ended up in hospital complaining of stomach pains. As a parent, we were just thinking appendicitis. How wrong we were. After an ultrasound, an MRI and eventually a biopsy, our worst nightmares were answered. Our sweet little boy had cancer. A multitude of thoughts went through my mind

"Kids don't get cancer. Only adults do."
"How could this have happened to us, things like this happen to "other" people."
And the worst "My child has cancer, is he going to die?"

After assurances from our oncologist that this was a better type of cancer to have and easily treatable, we felt a bit better.

Over the course of the next few months, James had round after round of chemo, some worked, some didn't. We were also told that he would need a liver resection but they couldn't do it in Adelaide (where we live) and would have to go to Melbourne.

Come Easter 2011, chemo wasn't doing its job. The tumour wasn't shrinking so not only did we have to go to Melbourne for surgery, but he also needed a different type of chemo over there.

We managed to get through Mother's Day at home but had to be in Melbourne the following week. After a long 10 days in hospital battling fevers, pains and numerous other side effects, we were given great news. The chemo was working and James would be able to have surgery soon.

On the 15th of June 2011, the day after his 6th birthday, James went in for his liver resection. 8 hours later, his doctor came out and told us that he was in the clear. The surgery had gone well, they had removed 5/6s of his liver, and the only bit remaining was healthy and would regrow to full size within 6 weeks. We were sooooo relieved.

We spent the next few weeks in Melbourne while James recovered, and headed home in early August. We were so happy to be heading home and starting life again. James was going back to school and we were as normal as a childhood cancer family could be.

On the 7th of September, James had to head back to the hospital for another MRI as his blood tests had shown his AFP levels were a bit high. The next day, our whole world crumbled again. Not only had James's cancer come back, but it was in 3 different spots, including 6 spots on his lungs. It was now a matter of allowing him to live his life (what was left of it) to the fullest.

Mid September, we headed to QLD for our Make a Wish holiday, and by the time we got home James's health had deteriorated quite rapidly. In early October, James had a morphine pack attached to his port to help with his breathing and pain. Day by day he became more and more detached and lethargic.

At 6:05pm on Monday 17th October 2011, James gave up his gallant fight. Surrounded by those he loved and cherished - his Mum, Dad, Brother and Uncle.

Fly Free Beautiful boy, you will always be remembered as a hero of this horrible disease.

Written by his loving family Gail, Richard, Harrison and Andrew.

All our love to your family.

Love Keely xx

Xavier

Rhabdomyosarcoma

Will

Acute Lymphoblastic Leukemia

Josh

Esthesioneuro-blastoma

Charlee

Diffuse Intrinsic Pontine Glioma

Daphnie

Langerhans Cell Histiocytosis

Declan

Glioblastoma Multiforme

Our first wonderful, funny, courageous and beautiful Golden Angel Octopus Hero is someone very dear to my heart, Declan. This angel was my friend and my inspiration to never give up fighting for these kids. His amazing family were also an inspiration and Emma his very close cousin set up Project Declan that will forever honour Declan and raise money for childhood cancer research so families and children do not have to go through what they went through.

This is Declans's Story as told by his loving Mum and Dad, Angus and Hollie.

Declan had come home on a Monday from school and said he'd fallen over and hurt his back at school. For the next four weeks, he was off school, waking at all hours of the night, crying and complaining about how sore his back was. He'd been to countless doctors, a Paed specialist as well as the hospitals on a couple of occasions. On Friday the 25th of May, he was admitted to the Mater Children's because his legs were a bit fuzzy and he couldn't stand on them. Saturday came and went and he stayed the same and by Sunday he was in a world of pain and had no feeling from the waist down. He was rushed off for an MRI that revealed a tumour crushing his spinal cord. He was then rushed into emergency surgery (we only had about 15 minutes with him before he was taken away for surgery).

We would learn later that they didn't expect him to survive the surgery but Declan pulled through with flying colours. The only thing that didn't return was the feeling from his waist down so then came a whole new world of our youngest son not only having cancer but becoming a paraplegic as well. We waited 10 days for our pathology results which delivered a blow that I never want to experience in my life ever again.

Those words "there isn't a very good success rate with children for this type of cancer" were devastating. Your son has stage 4 Glioblastoma Multiforme still bring tears to my eyes. We then moved to the Royal Children's Hospital for Declan's treatment and rehabilitation. We moved into a surgical ward so Declan could recover and because of the oral chemo Declan was on, they decided to keep him there because there were other boys in wheelchairs.

We stayed at the Royal until October when Declan finished his first lot of chemo and radiation. We then spent another month at Ronald McDonald house while Declan was having rehab. Whilst we were in hospital, Declan's cousin Emma set up Project Declan initially to raise funds to renovate our home but that grew and became a charity so now we raise funds for Childhood Cancer Research. Christmas 2012 came and went and all Declan's results were great and he went back to school.

In March we received devastating news from our oncologist after a routine MRI. Declan had two small tumours on his spine at C1 & C2. Then came more chemo and radiation. In May, we decided to take him on a family break to Hamilton Island to do all the fun things Declan wanted to do. What a fantastic time we all had.

On Friday, June 21st 2013, after another MRI (Declan was having headaches) we discovered he had 5 small tumours on his brain and as Dr Nicholls explained, probably only a couple of months to live. We came home utterly heartbroken and set about making Declan as comfortable as possible. By Tuesday the following week, the palliative care/pain nurse came to visit and put a catheter in Declan's leg so we could administer pain medication when necessary. Declan's response was "Mum are these people professional?". I guess their lack of uniform prompted his concern.

On the following Wednesday, Leanne visited with us again and was concerned at how much he had deteriorated so she called Martin to come home and basically told us he could slip away at any moment or it could be a while. We called all our families and asked them to come and spend their final moments with him. Unfortunately, one family member didn't make it back in time from overseas. Declan passed away on Thursday the 27th of June 2012 at 4:48pm. The most saddest day of our lives. There were so many people at his funeral the following week. Over 1000 people came to pay their respects to him and to celebrate his life and most of those people we didn't know, but I'm guessing a lot of those people have come to our fundraisers and donated to Project Declan to help other children just like our beautiful son. So a big thank you to all of you outr there who give a little or a lot. Keep on giving because its everyone out there that finds the research for cures.
Look us up on Facebook Project Declan.

Dallas & Martin Hegarty

The Mt Cootha Challenge that Project Declan organises each year is an amazing show of strength and endurance. Marty, Declan's Dad and Uncle Tony, ride nonstop for 24 hours up and around Mt Cootha, the equivalent to riding Mt Everest. Many riders, walkers and joggers register each year to join the battle with Project Declan against childhood cancer. If you join in and listen closely at the top of the mountain you might just hear some children laughing as they go over the top in a convertible with hands held high. The driver ended up with a speeding ticket later, LOL. That will be Declan and a few friends on the very first ride before he passed away the following year. I know because I was in the car.

Love you to the moon and back, miss you every day and I will never stop fighting.

Love always Keely xx

Maddie

Neuroblastoma

Claire

Brain Cancer

Our beautiful Golden Angel Octopus Hero we honour is the gorgeous Claire.

Claire's Story is written by her loving family Robert, Lynette and Liam.

Claire Elise Ollier had a zest & enthusiasm for life. Her smile captured hearts & won admirers, she seemingly had a bright future to look forward to.

At the age of 8, Claire was diagnosed with a rare brain tumour. Claire’s initial symptoms were very subtle. She was often tired. As parents, we put that down to long days at school & the approaching end of the semester. You see, there was not an activity that Claire was not involved in. She played tennis 3 times a week, danced 3 times a week, was in the school choir, the school orchestra, attended diligently to her school work and generally played hard. As parents, we were exhausted, just keeping up with her. So in the final weeks of term 3, when Claire would come home from school & just want to watch TV, we thought, this is what normal kids probably do.

Claire had come second in her school cross country just 2 months before. There was absolutely no lead-up to ever thinking our daughter had cancer, let alone brain cancer.

On Father’s Day in 2013, Claire’s father noticed an odd, high-stepping gait with Claire & took her to the emergency department at the local Children’s Hospital. It took some convincing. 3 doctors and 4 hours later, Robert had managed to convince the doctors, that he thought his daughter had a brain tumour. Parents know their children best! We hoped & prayed that he was overreacting. The next day, an MRI was scheduled and a large tumour was discovered. Our perfect world had crumbled within 2 hours.

The exact diagnosis of the tumour is still up for debate & the diagnosis changed often, from the initial discovery to the final treatment. Following a biopsy, we were advised that Claire’s tumour was ‘curable’, words every parent wants to hear, to only later, being advised that the type of tumour was ‘terminal’.

We never gave up hope, convinced that our daughter was the one that would beat the cancer!!

We had protected our children from all types of childhood dangers, what we never anticipated was cancer. We did not have a family history of cancer until Claire’s diagnosis. We didn’t know that brain cancer has the highest incidence of childhood mortality. Tragically, we were to learn that fact later.

During Claire’s illness, she was involved in fund-raising activities, for the Cure Brain Cancer Foundation. In Claire’s memory, we are continuing to fund-raise for childhood brain cancer research. We don’t want any other family to experience the devastation of a child/sister's death to brain cancer. If you would like to assist us in our mission, please visit Cupcakes for Claire. At one point, we were advised by Claire’s treating team, ‘that it would be easier to write a book about what we don’t know about childhood brain cancer, than what we do know!’ We want the medical profession to be all over this disease & how to cure it!

We now face every day, with the jewel in our family crown missing and Claire’s loss is felt in everything we do as individuals & as a family unit. We will never be whole again!

Thank you so much Keely & Cathy for honouring our precious girl.

Kind regards, Lynette

A message that Lynette and Robert both nurses would like to be told to all parents who are the advocates for their children, whether that is for cancer or any sickness. You are allowed to get a second opinion if you have a gut feeling that things are not going right or are going too slow.

Cupcakes for Claire is set up in Claire's honour and will assist with any fundraising activity you would like in the Brisbane, Bellbowrie area.

Thank you to this beautiful family and all my love to you all and the beautiful Claire, who is sending her magic wishes and sprinkling fairy dust down on every cupcake her mum makes.

Love always Keely xxx

See less

Matilda

Cancer

Ashton

Cancer

Kybie

Brain Cancer

Ella

Acute Lymphoblastic Leukaemia

Liz

Acute Lymphoblastic Leukaemia

Our absolutely gorgeous Golden Octopus Hero is the very brave and beautiful Lizzie. We are honoured for her Mum Mel to share her story with us. Thank you Mel and Lizzie. Lizzie comes from the most beautiful place in the world the Atherton Tablelands.

Lizzie's Story as told by her beautiful Mum and her pet puppy Jasmine

Liz was diagnosed one month shy of her second birthday with b-cell ALL (standard risk). I'm a GP (Doctor) and had noticed some bruises on her on the Wednesday.... just the legs. I thought it was because of daycare or usual toddler clumsiness. She had been a bit off the last week or two with viruses and usual daycare bugs. And she was a bit pale but it was winter.

I told myself she was fine and then her gums bled when I brushed them the next day. I took her to ED with a heavy heart and a premonition of what was to come. A junior resident handed me the blood results and that is how I was told Liz had leukaemia.

Despite the poor start, Liz has traveled well. She is an amazing and strong young girl. We are due to finish maintenance this year if all goes well, she will be enjoying having a normal life - she loves to dance ballet, swims, LOVES arts and crafts, and thinks that unicorns are awesome. She has a pet puppy - Jasmine - whom she adores. I'm a single mum. My Mum, Sue, took a lot of time off and came to Brisbane to help me get through Lizzie's treatment and we can't thank her enough for that.

It hasn't always been smooth - Liz suffered a blood vein clot (similar to a stroke) as a result of one of the chemo agents but fully recovered after a week or so in hospital and some ICU input. As a Doctor, I was shocked and appalled at the lack of funding for children's cancer and also at the outdated therapies we use. I cannot believe these kids are given adult doses of medications for their chemo. And without research, these treatments won't change and kids will suffer side effects of the crappy chemo we feed them as Liz did... and Liz has a good prognosis. There are so many others who won't. It breaks my heart. Anyway, I'm passionate and I care.

Our world and our hero, love Mum xx

Lizzie, Mel, Sue and Jasmine we can't thank you enough for sharing your world with us. Mel, you are so right there isn't enough funding, 4% just isn't enough that is why we need to increase awareness about our kids as awareness leads to increased funding and that leads to a cure. We will fight this together and Lizzie together we will win. Keep fighting beautiful.

Love to you all, Keely xxxx

Liam

Acute Lymphoblastic Leukaemia

Charli

Acute Lymphoblastic Leukaemia

Kyra

Acute Lymphoblastic Leukaemia

Cayden

Brain Cancer

Aria

Neurocytoma

Ryan

Glioma

Maddy

Leukaemia

Maddy's Story as told by Herself

When you ask an adult about the day they were diagnosed with cancer, they’d probably tell you it was the worst day of their life. But if you were to ask me about my diagnosis day, I’d tell you it wasn’t all that different from any other day. I mean sure, I’d never really been in a hospital or poked with needles, but emotionally, it was like any other day. I went to my GP the day before, who ordered what seemed to me as a routine ultrasound for my hip which had been sore. When we went back for the results, she simply told my mum to take me to the hospital to drain the fluid that was gathered. That seemed like an easy fix, and I was happy that I would be able to walk again without pain. On the day of my diagnosis, I was not thinking something sinister was going to happen. I felt like a normal 12 year old that was going on a novelty outing to the hospital. My mum obviously had no idea either; she even took me to Mcdonald's beforehand for dinner.

The night at the hospital went without fuss. The on call doctor completed the aspiration on my hip and to me that was it. I was fixed. I don’t remember a point during the night when my diagnosis came to light. No one told me, I was happily oblivious to it all. They had told my mum (and only my mum) they thought it was leukaemia and that I would be flown 2 hours away the next morning, to reach a hospital better equipped to treat me. So they took me to my own private room while my mum went home to pack an overnight bag for me and collect my older sister. My biggest emotion that night was sadness from my mum leaving me alone while she went home. I was not worried about my life expectancy, or what treatment I would go through, I simply did not want to be left alone in an unknown place.

Sure enough, the next morning they were preparing me to fly. They gave me my first anti-nausea drug, which I thought was utterly ridiculous. I had never had travel sickness before, yet they insisted I would need it (I didn’t). They piled me into the back of an ambulance not 30 minutes later and took me to the airport. There I was loading into a Royal Flying Doctor’s plane and strapped down to the bed. At this point, I still had no idea that I was sick, or why we were going to Brisbane. We landed in a small rural town to pick up a new passenger. It was at this time I needed to go to the toilet. I insisted that I was completely fine to walk and go by myself, yet they wouldn’t let me do either. They found a chair and carried me like a queen to the toilet, joined me in the toilet cubicle, before carrying me back to the plane. I found this to be quite stupid, yet hilarious. I was a perfectly healthy 12 year old, what was with the special treatment?

The special treatment continued when reaching the Children’s Hospital in Brisbane. They placed me in my own room in emergency and got me my very own doctor from upstairs. I think it was at that point that I knew something wasn’t quite right. I mean, who flies someone 2 hours on an emergency plane, to see a doctor? I can’t remember when the doctor told me I had Chronic Myeloid Leukaemia, but I do remember texting my friends with my new knowledge. I thought I was ‘cool’ to have this leukaemia, and be able to tell my friends that something interesting had happened to me. They were all obviously very confused. What 12 year olds know what leukaemia is? All they knew was that people went bald and died from cancer. So they thought that could happen to me. I on the other hand was still in it for the perks of being able to have an interesting story.

So in the end, my diagnosis day was not the worst day of my life. To me, it was simply another day with new experiences and a new story to tell. At 17 now, I look back and laugh at myself for thinking how cool I thought it would be to be different and have leukaemia. But many good things came out of that day in the end, and in way, I’m glad I was diagnosed. I am who I am today because of it, and I’ve learned to stay positive about life, all thanks to my diagnosis day. To say it was the best day of my life would be a stretch, but it definitely wasn’t my worst.

Love Maddy xx

Johanna

Maddy's Sister

Ryder

Medulloblastoma

Madi

Glioblastoma

Brayden & Cooper

Madi's Buddies

Orlando

Neuroblastoma

Declan

Lymphoma

Edmund

Langerhans Cell Histiocytosis

Jesse

Hemophagocytic Lymphohistiocytosis

Truman

Hodgkins Lymphoma

I am so pleased to honour a wonderful Golden Octoppus Hero and his name is Truman. Truman's Mum Michelle and Dad Wayne bring us his story below which we thank them so much for.

Truman's Story as told by his Family

Truman was rushed to Lady Cilento Children's Hospital on Good Friday 2015. He was later diagnosed with Hodgkins Lymphoma stage 3B. He was 15 years old.

He had a small lump pop up next to his collarbone. He had not been 100% but, like, running at 90%. He was 15 and about 6ft 2 with lots of growing. We Took him to the doctor and after a week of blood tests and no answers except major inflammation, but no idea where, and because it was Thursday before easter break they decided to do a CT scan.

7am Good Friday we got a call from doctor to go straight to Lady Cilento Children's Hospital Emergency. They were expecting him. The CT showed all of his lymph glands enlarged. When we finally got to see a doctor at LCCH he said he would have got Truman flown down on his results earlier but our Doctor told him he was still doing everything he normally would. The LCCH doctor also said when he saw how tall he was that he shouldn't be able to stand up with the amount of red blood cells he had. After the biopsy, we were able to go home on Sunday and wait for a diagnosis. It took about a week and it was the longest week ever.

We were putting cattle through the yards when the call came through. I'll never forget because I was on headbale and I'd left it open to answer the phone. All I could hear was me getting in trouble for letting some cows through, and the Oncologist asking "is this a good time"?? However when is a good time to find out your child has cancer? So we went back for more testing to find out what stage he was at and then a treatment protocol.

He had 6 months of chemotherapy and 1 month of radiotherapy. He finished his treatment in time to have Christmas at home.

Truman's time in Brisbane was difficult as he is a country boy and he loves fixing machinery. Every chance we got to come home he was straight down to the shed working on a little dozer he had started to rebuild before being diagnosed.

He just had his 15 month post treatment check-up and he is going well.

He is our hero, love you to infinity.

Love Mum, Dad, Kasey and Codie

Thank you so much Michelle, Wayne, Kasey and Codie for sharing your amazing man with us, it was such an honour for us. Truman, you are just amazing, you have fought an enormous battle, we will continue to fight for all of you so no one has to go through this anymore. By sharing your story helps raise awareness and by doing that we will hopefully one day get the government to increase the funding for research which is only 4%. Keep fixing those dozers, that is awesome.

Love Keely xx

Tyrone

Non Hodgkinson’s Lymphoma

Amelia

Acute Lymphoblastic Leukaemia

Cooper

Diffuse Intrinsic Pontine Glioma

Frankie

Acute Myloid Leukaemia

Our very special Golden Octopus Hero is a true hero in every sense of the word. She still has a long way to go and we are so grateful to her Mum and Dad, Kate and Duncan and her two sisters Madison and Camilla for sharing her story with us.

Frankies Story as told by her Beautiful Family

Frankie has a smile that lights up a room with a kind, boisterous and hilarious personality to match. She loves kittens, barbies, princesses and playing hide and seek. Her favourite colours are pink and purple. She seems just like every other 3 year old girl, except she’s not. She is enduring something that no person should ever have to.

One Sunday night in February this year, Frankie was diagnosed with Acute Myloid Leukaemia(AML). AML is rare, aggressive and comes on very suddenly. Within days of her diagnoses, her first round of high risk chemo began which was soon followed by the second. After weeks of horrific symptoms, unfortunately her results returned showing that the chemo had not worked and the leukaemia had continued to spread.

From here, her best chance of survival was a Bone Marrow Transplant. After a search of the world donor registry, there was no suitable donor match for Frankie as she has a rare tissue type. Instead they had to use a cord blood donation, which means they have one shot at the transplant with just a small amount to work with. Once they have used, this there are no other matches left for Frankie. During this process she remains in isolation, unable to talk, eat, smile or sit up. Our beautiful girl is merely a shadow of herself. She continues to receive blood transfusions and go under anaesthetic for countless procedures to fight the horrific health complications her cancer and transplant have caused.

Throughout her battle, Frankie’s parents have had to remain at the hospital 24/7 to help care for her on a rotating shift. One night they will stay with Frankie the other night they are home caring for their other their other daughter, Camilla who is in her first year at school.

She is our brave beautiful hero.

All our love forever and ever,

Mum Dad Madison and Camilla.

Thank you so much, you are all heroes. Frankie couldn't get a bone marrow match because we don't have enough people put their name on the National Bone Marrow Register, please do. Frankie is kept alive by blood transfusions and many more like her are. Please become a blood donor. Brave and gorgeous Frankie, we will battle together for all of our kids. Keep fighting beautiful we are right beside you.

Love Keely xxx.

Olivia

Acute Lymphoblastic Leukaemia

Robert

Lymphoblastic Lymphoma

Today is a very special day for our amazing Golden Angel Octopus Hero. Today is his twelfth birthday but sadly he will be celebrating in heaven with all of the other golden angels. We are so honoured that his Mum Denise, Dad Colin and all his beautiful brothers and sisters have shared his story with us. This is his journey as told by his Mum Dad, Eve, Emily, Brittany, Sophie, Caleb, Tyler and Liam.

Robert's Story as told by his Family

Robert Agius was diagnosed with Lymphoblastic lymphoma on the side of his head the day before his 2nd birthday, 28th November 2006. This didn't stop our Friendly Spiderman loving boy. He spent a lot of time in Brisbane having, chemotherapy, CT scans, and endless needles but always let the Drs treat him without a fuss.

When Robert was first diagnosed with cancer, he only had 1 sibling, Eve. She looked up to Robert as her superhero. He loved her back with all his heart. But soon after, along came Emily and Brittany, and even though so unwell, he loved them just as much.

Colin (dad) and Robert would often be seen sitting on the lounge playing Playstation, as Robert lacked energy most days. In fact, Robert would help his Dad complete all the hard levels in most games, but Robert's favourite game would have to be Spyro.

Robert fought a long and hard fight, but he never let his guard down. He even got to go to school, which was his dream, even though it wasn't for long he made everyday count.

Like most kids, he loved Kinder surprises. You would often see him playing with the toys from the egg in his room. In fact, with Robert took his last breath, he had his bag of kinders tucked up under his arm.

Robert lost his battle here in earth on the 12th June 2010. His memory will live on forever. He now has another 4 brothers and sisters, Sophie, Caleb, Tyler and Liam, who even though have never met him, know him really well.

Today we eat Kinders to celebrate his birthday today. I ask you to go buy your kids one, or even yourself to help celebrate.

One day I hope that Kinder will get behind his cause and donate 5 cents from every Kinder sold to help Childhood cancer

Forever our Superhero, loved with every part of us always.

Mum, Dad, Eve, Emily, Brittany, Sophie, Caleb, Tyler and Liam.

Thank you so much for sharing your gorgeous little superhero with us. We are honoured to be able to share him with the world and to ask every person to go buy a kinder surprise and put a pic up here in his honour. Beautiful Robert you truly are a hero in every sense of the word, I will keep fighting to change the way Childhood Cancer is recognised and one day hopefully find a cure, happy heavenly birthday beautiful.

All my love Keely xxxx

Gabrielle

Acute Lymphoblastic Leukaemia

Ryan

Malignant Melanoma

Sometimes a story touches your heart more than others and as much as I have loved and been touched by every one of our Golden Octopus Heroes, Angels and Buddies, this story has really touched my heart. I cannot say how privileged we are to have Lyn, Iain, Lauren and Thomas share with us the story of our beautiful Golden Angel Octopus Hero, Ryan.

Ryan's Story as told by his Family

RYAN JAMES DOBBIE
13/04/2009 to 3/11/2010 (Malignant Melanoma)

We welcomed our baby boy Ryan into the world on Easter Monday, 13 April 2009. When they put Ryan onto my chest I saw the most beautiful big blue, wise eyes looking back at me. That was not all that I noticed. It looked like he had a mole/birthmark on his forehead and I asked the nurses if that was the case. They were busy as I had a complication with my placenta and little did I realise he also had a birthmark/mole that covered most of his body.

Whilst I was rushed in for surgery, my doctors advised me they had to send photos to Townsville to confirm what Ryan was born with. I did not get to see my little man until the next day, when it was confirmed Ryan was born with a Giant Congenital Melanocytic Nevus and his was a bathing trunk type as it covered him from his knees to the middle of his back and belly. He also had numerous other moles called satellites.

We were told that his condition was pre-melanoma and the chances of it turning to malignant melanoma was between 2-4% of the whole population, so we felt very relieved. There were several tests we had to do to ensure there was nothing physically or mentally wrong and he got the all clear.

During this time, Ryan was the most perfect and lovable little boy. It was very difficult to come to terms with his condition, however, his personality outshone the physical imperfections. Ryan was the most charming little boy and strangers would often comment on how handsome he was. Most people did not even notice his moles. He always had a smile for everyone and his blue eyes always sparkled. He would even yell at people who walked passed him without saying hello to him.

Ryan had five surgeries to try and reduce some of his moles and to ensure the ones that looked abnormal were OK. When Ryan was 16 months old, he was playing outside and fell over. He cried, which is normal for any child and then he got up and continued as normal, but he was limping a little. He was still like that the next day, so whilst I was at work, my mum took him to the doctor and he was referred for an x-ray, just because the doctor knew Ryan had a very high pain threshold.

That day the x-ray was done and we got a phone call from the doctor saying he needed to see us. That instant, I knew it was serious. The doctor said there was something unusual and we were asked if there were any previous injuries Ryan had suffered, which of course there hadn’t. Two days later we were at the Cairns Base for a pediatrician’s appointment and I took the x-rays and report with me. The on-call orthopedic surgeon was not there but was going to review it and get back to us. The next day our Paediatrician’s office phoned and advised they had made an appointment on Monday for an MRI to be done in Brisbane and that we had to fly down on Sunday. I said, no as Ryan had to go there anyway on Tuesday for surgery, however, they insisted we went sooner.

My mum went with me as she didn’t want me to be on my own. The MRI was done and Ryan was gone for hours, it was breaking my heart. That afternoon when Ryan was in recovery and mum had gone back to our unit to make lunch, the oncologist came to me and said the results were back. He confirmed it was cancer, so I immediately thought Ryan would lose a leg and he would have to learn to walk again. I was devastated to be told that Ryan’s cancer had broken the leg he was walking on. The cancer was also through his whole body (liver, bones etc) and that there was nothing they could do for us. I had to get the doctor to get my mum to come and tell her as well as me as I couldn’t deal with this news alone.

My mum came and we were pretty much told that Ryan did not have a lot of time and asked us what we wanted to do.
My husband and daughter flew down from Cairns and we made memory items, videos and went to zoo’s etc. We all slept on the floor together and we cried when the kids were asleep.

The palliative care team and social workers and the doctors were wonderful to us. A plan for his management was set up and we came home to enjoy every last minute with Ryan.
We had a party for Ryan. Friends and family and strangers all contributed. There was a merry-go-round, zoo-to-you animals, face painting, jumping castle, games, presents and lots of food. Ryan was so happy, he was even a bit naughty with my Cd. He got sprung rubbing them into the ground and just gave a cheeky smile when he got caught.
Ryan was very mischievous and happy. He never made a fuss and he had been through so much with the operations, he was so tough and brave. He had such a boisterous laugh and he and his sister loved each other dearly. Ryan lived life to the full and was always full of energy and knew he was loved.

Ryan passed away 11 weeks after his diagnosis and our hearts were forever broken. He was only 18 months of age. We only got to celebrate one birthday and Christmas with him and those days will be forever in our minds and hearts.

Always and forever loved and in our hearts.
Mum Dad Lauren and Thomas.

Thank you so much for sharing your gorgeous boy with us, he will touch many more hearts and help to let everyone know that childhood cancer isn't rare, we all need to stand together to fight this and make sure other families don't go through this anymore. I promise you Ryan and your amazing family I will never stop trying to make the world listen and fight for our kids.

All my love Keely xx

Sophie

Retinoblastoma

Brooke

Cancer

Kael

Cancer

Eli

Wilms Tumour

Troy

CNS Langerhans Cell Histiocytosis

Our wonderful Golden Octopus Hero comes to us from across the world in the US, Alabama. Troy is a mate of mine through the world of internet but also because his and my stories are nearly identical. Troy is currently undergoing his chemo and is the second child known (I was the first) to go through chemo without any hormones at all. Troy has Central Nervous System Langerhans Cell Histiocytosis with panhypopituitarism.

This is his story as written by his loving family Sacha, Buddy and his favourite animal, his dog Max.

Troy's Story as told by his Family

Troy Grauel is 13 years old and was born perfectly healthy in 2002. However, around late 2012, Troy’s health started to very slowly and subtly decline. He began drinking more water and the amount increased over time. His energy levels decreased and he experienced weight loss, nausea and headaches. Around the same time, he mentioned that he didn’t feel like he was growing at the same rate as his peers.

Labs revealed that his sodium level was high and the stimulation test results proved that he wasn’t producing any growth hormone. At this point, with both high sodium levels and no growth hormone production, Troy’s endocrinologist ordered an MRI.

There wasn’t a large pituitary tumour but Troy’s pituitary stalk was thickened with abnormal enhancement and nodularity towards the hypothalamus along with absence of the posterior bright spot. She said things were starting to make sense and that his body was trying to regulate his sodium levels by drinking massive amounts of water because he wasn’t making the Antidiuretic Hormone that regulates thirst and sodium levels. She also said that since he also showed loss of growth hormone that his anterior and posterior pituitary had been affected and that it seemed to look like something called Histiocytosis.

After the MRI results, we were immediately set up for an oncology appointment along with a skeletal survey to check for bone lesions. She said if they could find a lesion outside of the brain it would be easier to biopsy.

The oncologist told us it could also possibly be Germinoma, Lymphoma along with various other types of tumours. Troy underwent lumbar punctures to test spinal fluid and eventually at the advice of the Tumour board at Children’s, we met with a neurosurgeon and he was scheduled for a pituitary stalk biopsy in October of 2013. Unfortunately, the surgery was not successful in obtaining enough tissue for a diagnosis. The surgeon did not want to cause further pituitary damage and so he couldn’t cut away too much tissue. During this time, Troy continued to decline physically and we found out that he lost his thyroid hormone as well.

At this point we were told he would be watched and have regular blood work because he could eventually also lose cortisol which is the big one. This can lead to an adrenal crisis. Basically one thing would get replaced and he would lose another. Eventually, Troy lost his cortisol, the last hormone. The complete loss of pituitary function is a condition known as Panhypopituitarism. This is not reversible and will have to be carefully managed throughout his life.

There were discussions of trying to do another biopsy with multiple surgeons or whether to go ahead and treat Troy with chemo based on what the doctors thought it was (Histiocytosis). At this point, we were directed to Dr. Kenneth McClain at Texas Children’s who is an expert in this area. He diagnosed Troy with Central Nervous System Langerhans Cell Histiocytosis with a fifty percent chance of Neurodegenerative disease. Dr. McClain’s instructions were to begin chemotherapy. This treatment, which will last over a year, is to try and prevent any further damage to the hypothalamus and to hopefully prevent possible Neurodegenerative disease. It will not reverse any of the damage that the disease has already caused and there is not a 100 percent guarantee that it will prevent the other. This disease is very rare and is in desperate need of more research.

Currently, Troy has to take a lot of medication on a daily basis just to survive and to function as normally as possible. I always heard that the pituitary was the “master gland” but until seeing someone without a working one, I had no idea how important it was.

During all of this, Troy has endured many many blood tests, several spinal fluid draws, tons of MRIs, many ER visits, several inpatient hospital stays, a brain biopsy, port placement surgery, 3 rounds of chemotherapy (with nine or ten more to go), daily injections of growth hormone and numerous round the clock daily medications. He requires an emergency injection of steroids available at all times in case of an adrenal crisis. He missed pretty much all of his sixth grade year and a lot of his seventh grade year as well. Troy is positive and always finds the good in things. It has been a hard road for him but he never stays in self pity or has the why me. He has taught me more than I will ever teach him. His future plans are to attend UAB college and go into the medical research field. He wants to make a difference in the world and to help other people. This disease has affected Troy’s “quality of life”, as the doctors put it, but it has not affected his spirit.

Thank you for sharing your amazing story with us Troy, and together we will keep fighting, together we will make a difference and join hands together across the water to have #onevoice for the kids.

Keep strong.

Love always Keely xx

Kacey

Acute Lymphoblastic Leukaemia

Our amazing and so beautiful Golden Octopus Hero is the gorgeous Kacey. This is her story as told by her beautiful Mum Kristen, Dad David and her two dogs Diesel and Rocko. Thank you so much for sharing your hero with us.

Kacey's Story as told by her Mum

Kacey was a happy, chatty toddler. She was cutting her 2 year old molars so the fact that she was often lethargic, clingy and lacking in appetite didn’t alarm us. We had noticed Kacey always had quite a few small bruises on her legs but she’s a playful toddler and her friends had bruises too. We took her to the doctor one evening because she had developed a purple looking rash but was told it was a viral infection.

Her rash disappeared and reappeared in different spots and we also noticed Kacey was looking pale, had dark circles under her eyes and wanted to sleep a lot. After speaking to two different friends one day the L word came up but we weren’t panicked, thinking maybe she was low in iron and teething. Cyclone Debbie visited us, flooding our doctors surgery so we decided to go to the Mater after hours to get a blood test for peace of mind.

That evening our lives were turned upside down. Just 15 days after Kacey turned 2 we were told she had Leukaemia and we would be rushed to Brisbane for further testing & treatment. That purple rash was petechiae from lack of platelets. My reaction was as if she was already dead, luckily my husband held it together for Kacey. We were admitted to the base hospital and flown to Brisbane with life flight the next day. A few days later after a bone marrow aspiration, lumbar puncture and blood tests Kacey was diagnosed with Acute Lymphoblastic Leukaemia.

After a long 9 months in Brisbane, approximately 82 nights in hospital and 2 life threatening infections, Kacey started maintenance treatment in December and we made it home for Christmas. It’s a long road but Kacey is looking great now, putting weight on, growing her hair and she has her colour back. We are back in Brisbane 2 out of 3 months for IV chemo and a lumbar puncture but we are slowly adjusting back to reality.

She is our absolute hero and we love her to the moon and back

All of our love forever.
Mum Dad Diesel and Rocko

Thank you so much for sharing her with us, a beautiful little girl like Kacey should be doing what she loves the most and listening to her wiggles, playing with her dogs and loving everyone’s babies, not spending time fighting for her life. Together Kacey, we will work together and keep fighting for a cure.

All my love Keely xxx

Mums & Dads

They are our Heroes too xxx

Our Champions

Our Golden Octopus Champions show Courage and Bravery

Meet our champions