Our Angels and Heroes
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.
Our Golden Octopus Hero, Zavier.
Love Keely x
Zavier's Story by his Mum
Zavier was diagnosed with Acute Lymphoblastic Leukaemia in July 2012, just one week after his 3rd birthday. After 1161 days of treatment he is now in remission. At that time, the family were to move to Far North QLD. Instead, they moved into Ronald MacDonald House, next to the hospital in North Melbourne.
The first 9 months of treatment were really rough on Zavier and the family. After the first month of treatment, he didn’t look like the same boy as the steroids caused an uncontrollable hunger. He would need to eat all through the night. He lost the use of his legs and was either in a pram or carried. He slowly built up strength again in the legs but has never fully recovered. He had weekly chemo and lumbar punctures and extra visits to the hospital for infections and pancreatitis. The worst was before his last strong dose of chemo on delayed intensification. He ended up with mucositis and methotrexate poisoning. He couldn't open his mouth to eat or talk so was fed and medicated through his port and a line in his arm. After he recovered, Zavier moved onto maintenance. He had blood tests every 2 weeks and chemo every 4 weeks and went to Brisbane every 12 weeks for a lumbar puncture and chemo. His life was run by steroids which seemed to have the worst affect on him.
After finishing treatment in September 2015, he slowly improved as the steroids and chemo left his system.
Look at this beautiful Golden Octopus Hero, the adorable Cleo.
Love Keely xx
Our wonderful Golden Octopus Hero is the amazing Kael. He is battling the same cancer as me and we love him to bits. Thanks for being a great fighter Kael.
Love Keely xx
Our wonderful Golden Octopus Hero is my friend Riley. He is a wonderful young man and like me will have life long hormone replacement because Childhood Cancer doesn't just stop when the treatment stops.
Love ya heaps Riley
Love Keely xx
Certainly last but not least at all! Isn't she beautiful! Haylea is one of our Golden Octopus Heros.
Love Keely x
This is beautiful CJ and she is a Golden Octopus Hero and has a great smile to go with it.
Love Keely x
Our beautiful Golden Octopus Hero, little Tobi Duggin.
Love Keely xx
This is beautiful Anthony another of our Golden Octopus Heros!
Love Keely x
Our wonderful Golden Octopus Hero is the amazing and good looking Matty. Matty is back at school following his treatment for rhabdomyosarcoma of his hand. Loving life and being back with all his mates again. Still doing his checkups but so far doing great. Well done Matty.
Love ya heaps Keely xx
Our beautiful Golden Octopus Hero is the amazing Rhiannon. She was diagnosed with osteosarcoma on the 9th September, 2009. A prosthetic right humerus and shoulder joint has not stopped her from achieving great things and she has passed the three year mark in remission. She is now doing a Bachelor of Communications majoring in Creative Writing. What a champion. Rhiannon, thanks for showing the kids with cancer what can be done regardless of their diagnosis.
Love Keely xx
Our Golden Octopus Hero, Luke, is a hero in many ways. He has just loaned himself to us to help the kids but he is a champion in his own right. The amazing Luke from Luke Spalding Racing, has been battling a rare childhood cancer (DSRCT) for a few years now, however he raises money to buy iPads for sick kids in hospital every Christmas. He is a champion formula 3 racing driver and a shining example to all our kids with or without cancer, of strength and kindness. Thank you Luke for showing them all what can be achieved.
Love you to bits Keely x
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
Our beautiful Golden Octopus Hero is the amazing Xavier.
Xavier's loving family Nerida, Donovan and Lndyra have kindly shared their story with us.
Xavier's Story as told by his Family
Xavier was 23 months old when he was diagnosed with rhabdomyosarcoma in his bladder. After the discovery of the tumour in the Townsville Hospital, we were flown to the Lady Cilento Children's Hospital in Brisbane where the cancer was confirmed through extensive tests, and a treatment plan was organised.
The plan meant 45 weeks of intensive chemotherapy and radiation in Brisbane. With Donovan and his sister still in Townsville, the decision was made to relocate to Brisbane to ensure that we could be together as a family.
Xavier missed his cat Wilson but unfortunately, he couldn't be taken that far in a car to be with him.
Thank you so much for sharing your beautiful boy with us and we will keep trying to help you and keep everyone updated about your beautiful boy.
Love Keely xx
Acute Lymphoblastic Leukemia
Our Golden Octopus Hero is the gorgeous Will. Will was diagnosed with ALL (acute lymphoblastic leukemia) in August 2006 when he was 18 months old. He had many many complications during his 14 month stay in Brisbane and part of them meant he ended up losing his oesophagus (they made him a new one out of his stomach), terrible chest issues and an ongoing chronic cough. Will is just beautiful and still has an amazing smile. Thankyou Will and we will continue to fight.
Love Keely xx
Our amazing Golden Octopus Hero is someone that has truly inspired me, I know every journey is incredibly hard with this terrible disease, but Josh's story is past belief. This little guy is a true hero in every sense of the word. Josh is 11 years old from Orange in New South Wales. His journey started at 5 weeks of age and he has only been clear of cancer for the last 12 months. Josh's family Alison, Dave, Jacob, Sam and Alannah are just amazing as well and have kindly shared his amazing story with us so we can proudly honour him. Of course his cat Max has had a big part in it as well.
Josh's Story as told by his amazing family.
It's a long story that spans 11 years and saw me given the option in early 2013 to put him on meds to make him comfortable and let him pass away.
It breaks my heart to even think back to that time because we had fought so hard against this horrible disease, but along with Josh's zest for life, his amazing courage and our wonderful Oncologist we made a decision to give it one last shot....
and here we are today....this is Josh's story....
Josh is 11 years old, he was diagnosed in 2004 at 5 weeks old with Retinoblastoma, his left eye enucleated at 9 weeks old. His right eye was affected at 12 months old with multiple tumours, cryotherapy, laser, sub con chemo, systemic chemo and radiation used over the following 5 years to treat multiple new tumours, relapses and seeding ... 2 years in remission. Then in 2012, a lump was found in Josh's neck which led to many tests revealing a mass at the base of the skull the size of a mans fist.
Diagnosis.... Esthesioneuroblastoma.... an adult cancer. Intensive chemo for 6 months followed and the mass melted away. Then in February 2013, he relapsed and the tumour had breached the blood and tissue barrier into the brain. More intensive chemo followed by a stem cell transplant in August 2013.
We have just marked our second anniversary since transplant and my little hero is NED!! (no evidence of disease ). We are still on 12 weekly MRI's and PET scans given his history.... Josh is our hero!
Thank you Josh and your beautiful family for giving us the honour to share your story. I am hoping and praying you will stay cancer free and ride your quad bike (with a helmet of course lol), swim in the river and live like a young man should. Heroes like you make me more determined to keep fighting to find a cure.
Love Keely xx
Diffuse Intrinsic Pontine Glioma
Our beautiful Golden Angel Octopus Hero is the absolutely gorgeous Charlee. A fundraiser remembering her 6th birthday on the 30th September, 'Light the Night', was held in her honour from 2pm on Saturday 26th September at Lake Moogerah Caravan Park. All money raised went to a very worthwhile charity, the Isabella and Marcus Paediatric Brainstem Tumour Fund.
Charlee's Story as told by her Family
Charlee was your typical 3 year old princess until 1st April 2013 when she was diagnosed with DIPG-Diffuse Intrinsic Pontine Glioma. Life as we knew it was no longer, something that nothing could ever prepare you for, something you never thought could possibly happen to you, to hear the words that your 3 year old daughter has a 0% chance to beat this and that we had just 9 to 12 months at best left with her by our side.
Charlee had such a passion for life. Throughout her whole 19 month fight with DIPG, she remained positive. She never lost her passion for life and lived each day to the fullest, smiling and teaching us all to never give up and to cherish the moments. She had such a cheeky little personality and loved joking around and having a giggle.
Our princess gained her wings on 2/11/14 and will be forever 5. Our lives will never be the same again, but how blessed we are that she chose us to be her parents. Charlee's little wishes will continue to make a difference and raise awareness and funding in her memory, for without hope what do we have?
"Charlee's Little Wishes" is her support page.
This was kindly shared by her loving family, Jaime, Darren, and her little brother Ryan (who she called her little rebel).
Thank you for sharing your precious angel with us.
Love always Keely. I promise I won't stop fighting for them all xx
Langerhans Cell Histiocytosis
Our absolutely gorgeous Golden Octopus Hero is a little country cutie, Daphnie. She is just the most beautiful and toughest little girl you could ever wish to meet. Daphnie has the same cancer as I do. Unfortunately there is no cure but she is a fighter and she will win. Her amazing family have so kindly shared her story with us to help raise awareness for childhood cancer but also to raise awareness that LCH is a cancer that people don't even realise exists. Thank you so much, this is her story as told by her loving family Sarah, Clinton, Callum, Ebonnie and Milton. With help from her dogs Grunt and Jacko and all the chickens. Xx
Daphnie's Story as told by her Family
Daphnie was 10 months old on the 13 march 2014 when we got the devastating news that our little girl has multi system Langerhans Cell Histiocytosis (LCH). Daphnie had LCH in her orbital region, liver, spleen, skin and bone marrow. Daph has been on numerous different chemo treatments, relapsing twice on treatment. Daph has still been receiving treatment for the last 635 days and still has a long road ahead. Daphnie is a real little fighter.
Love from her loving family xxx
That's nearly her whole life on treatments and she still has a huge battle ahead of her. We need more help to come together as one voice and raise awareness that our kids can't fight alone and to let the government know that our kids need more than 4% funding. Daphnie, together we will fight, together we will win and as soon as I can, I will be coming to see you and you have my promise to never give up fighting.
Love always Keely xx
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.
Our beautiful and amazing Golden Octopus Hero this week is the gorgeous Maddie. Maddie was diagnosed with stage 4 Neuroblastoma when she was only 8 months old.
Her amazing family Courtney, Rob and big sister Charli have shared their beautiful girl with us which is so wonderful. Thank you.
Maddie's Story as told by her Family.
Maddie was diagnosed in January 2014. She was treated at Princess Margaret Hospital in Perth where she had 4 rounds of chemo and then major surgery which lasted for 8 hours. They removed 75% of the tumour from her right adrenal gland. She then went through another 4 rounds of chemo. Maddie has had no evidence of disease for 12 months and is a happy and gorgeous girl.
Beautiful children like Maddie who are so tiny, should not be spending all this time in hospitals for chemo and surgeries. They should not be crying in pain, but instead, be laughing and growing. They shouldn't have to worry about cancer returning or the complications of treatment. We need to join together all across Australia and the world and fight for more funding to find a cure for this terrible disease.
Maddie, I will never stop fighting and one day, beautiful children like you will not have to suffer anymore.
Love always Keely xx
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
The lovely Ashton is our Golden Octopus Hero. Let's help kids like her to win this fight.
Love Keely X
Our amazing and cute Golden Octopus Hero is the wonderful Kybie. Kybie was diagnosed with brain cancer in 2013 and has come a long way following many treatments and surgeries. Like myself, Kybie loves Lee Kernaghan, our wonderful ambassador. He got the chance to meet him recently.
Keep singing Kybie. Lots of love Keely xx.
Acute Lymphoblastic Leukaemia
Our absolutely gorgeous Golden Octopus Hero all the way from Bundaberg Qld, is the beautiful Ella.
Ella's family, her Dad Adam and Mum Emma and beloved dog Louie, have so kindly shared her story with us. This is her story.
Ella's Story as told by her Family
Ella was diagnosed with ALL (Acute Lymphoblastic Leukaemia) just after her 3rd birthday in 2014. She had no symptoms and had always been a happy healthy child. Then she fell one day on her trampoline and hurt her knee. I wasn't too worried but then she wouldn't walk at all and was really upset. Our GP sent Ella for a blood test and her results came back saying her white cell count was very low. Off we went to Brisbane for a bone marrow aspirate and we had no idea it was going to be leukemia.
She was diagnosed and we weren't allowed home for 5 weeks. She has managed her treatment quite well with some transfusions along the way for blood and platelets. We are from Bundaberg and the support from our family has been amazing. My parents (Julie and Peter) and my husbands mum (Diane) and my brother and his partner John and Adam, have been there to make us smile.
Ella is now in maintenance and she will be finished treatment at the end of this year. We've met some beautiful people along the way and I couldn't be more prouder of my girl for her bravery. The more people who are aware of childhood cancer, the more we can spread the word. It needs more funding and more research, our government needs to listen to us. These kids endure so much and it's tough on their little bodies.
She loves playing in her cubby and going fishing with her grandad. She has also started kindy and loooooves that.
Ella is our bravest hero and our world,
Love Mum Dad and Louie.
Thank you Emma and Adam so much for sharing your beautiful girl with us. We definitely need the government to listen, our kids are our future, and a lot of people don't realise that by supporting childhood cancer research they are automatically supporting adult research as all new drugs need to be trialled on adults first to see if they work. They are then trialled on children so the adults win out as well. Beautiful Ella, keep fishing amazing girl with your Grandad and try hard at kindy because we are going to keep fighting for gorgeous children just like you.
All my love Keely xxx
Acute Lymphoblastic Leukaemia
Acute Lymphoblastic Leukaemia
Acute Lymphoblastic Leukaemia
Our absolutely beautiful Golden Octopus Hero is the very cute, Charli.
Her amazing family Belinda, Steven and Sienna, have kindly allowed us to share her story. Thank you so much. This is her story as written by her wonderful family. And of course brought to you by her favourite Guinea pigs, Elsa and Anna xx.
Charli's Story as told by her Family
Diagnosed with leukaemia ALL standard risk on 28th June 2013 at age of 2 years.
Charli's symptoms were very minor - high temps 3 days, very lethargic and loss of appetite but what toddler isn't when sick with a virus, well that's what we all thought it was, until I demanded tests from a doctor and within an hour we were phoned by them to rush Charli to hospital for immediate treatment.
Our perfect world was about to be turned upside down with the unbelievable news. I clearly remember the ED Doctor saying your daughter has a form of cancer "leukaemia ".....like any parent we didn't want to face reality. Charli was flown immediately to Brisbane for urgent treatment but as long days turned into weeks and months, life changed into a new normal medical lifestyle. Before we knew it, Charli's treatment was coming to an end, which we thought would never come, but recently our brave little princess finished her chemotherapy treatment on 3rd September 2015. She can now be a normal 4 year old.
Her loving family.
Charli is just so beautiful she should not have had to miss this part of growing up, being confined to tubes, hospital beds and pokes and pain every day. Her family should not have been torn apart and to endure the stress that comes with that. Together, we can be the voice these kids need and we will fight for them. Charli, I can't wait to meet you and your amazing family (and your guinea pigs). I will keep fighting and we will let the world know to send a message to the government that 4% is NOT ENOUGH.
Love always Keely xxx
Our gorgeous and amazing Golden Octopus Hero is beautiful Kyra. Her amazing family, Jessica, David and Rhianna, Phil, Cody, Shannon and Narla have so kindly shared her story for us all.
Kyra's Story as told by her Family
I have a gorgeous, beautiful, kindest hearted 8 year old daughter Kyra who has just been diagnosed with Pre B Acute Lymphoblastic Leukaemia. It took the doctors 2 months to diagnose her, so she has been through so much already before we got the diagnosis. We are only 2 weeks into our journey from the day we found out she had ALL. We are all still shattered and trying to come to terms with this horrible news. She is fighting like a warrior and we are so proud at how well she is doing. Everyone mostly points out that after every grueling procedure, treatment, everything she goes through, she still manages to smile. She is amazing.
Her journey so far is.... On The 1st of April 2016, Kyra was diagnosed with Acute Lymphoblastic Leukaemia. As a family, we were devastated but we stuck together and gave Kyra the support she needed. Because she is 8 and we had to be upfront and honest about it to her, Kyra is finding it hard to understand why it is her that has to get sick. She is mostly scared about losing her hair because she just loves her hair! She has had 2 rounds of chemo, 2 lumbar punctures, 2 lots of chemo in her spinal fluid, and a blood transfusion. She also is on more medication because her body had a bit of a bad reaction to the steroids she has to take. She always has a smile on her gorgeous face through the good and bad times.
Kyra's favourite animal is a bunny, she LOVES rabbits. Her hobbies are sewing with her nanna, ballet, playing cards and board games. She loves a challenge and is a very smart, talented and gifted young girl.
Love always Mum xxx
Thank you so much for sharing your story. Kyra stay brave beautiful girl, we all ask the question why did I have to get sick and no one can answer that, but believe me, we need to stay brave and keep smiling and we get through it. That doesn't mean it isn't going to be tough on all of us and we don't deserve to be sick. Hopefully one day we won't need to be sick anymore. We just need to keep fighting together and hopefully one day there will be no more cancer for kids or anyone.
Love always Keely xxx
Amazing Cayden is one of our wonderful Golden Octopus Heroes. He has been battling brain cancer for most of his life.
Love to your always, Keely xxx
Brayden & Cooper
We have a very special way of wishing everyone a very merry Christmas today and that is to honour an amazing Golden Octopus Hero for Christmas. We would love to thank his beautiful Mum Tina, Dad Levi, Spycer, Willow, and Cleo for sharing his story with us.
Orlando's Story as told by his Family
Orlando is one of four in our family. The only boy amongst 3 sisters, Spycer 9, Willow 6 and Cleo 8 months. He was the most beautiful Christmas present in 2013, a healthy baby boy that we had waited for. Unfortunately, when he was just 7.5 months old we were given the devastating news that he had stage 4 neuroblastoma, a cancer of the nervous system. His life and ours have been forever changed.
Orlando had treatment in Adelaide, chemotherapy, stem cell retrieval, surgery, stem cell transplant, radiation and immunotherapy. 15 months of treatment in total and he now has no evidence of disease, off treatment for 1 year! This Christmas he gets to celebrate his 3rd birthday.
Throughout all of this he has had a sparkle in his eye and a smile on his face. He has been resilient and brave like no child should. He adores his sisters, loves the outdoors, animals, dress ups, water, balls and The Cowboys. His vibrant personality, mischievous ways and cheeky smile light up our world.
He is our beautiful hero.
Love you to infinity.
Mum, Dad, Spycer, Willow, and Cleo.
We can't thank you enough for sharing your amazing boy with us to brighten everyone's day on Christmas. Orlando, little man you are amazing, I have your back and together we will fight for a cure so no child will ever go through this.
Love always Keely xx
Our amazing Golden Octopus Hero is the wonderful Declan. We are so grateful to his Mum Michelle, Dad Charles, Brother Zachary, with Lilly and Smudge for sharing his story with us.
This is Declan's story as told by his Amazing Family
After fainting at school & a trip to the emergency department at Caloundra Hospital on the 25th November 2015, Declan was transported to LCCH with a mass in his chest cavity. 6 days later, 1st Cell Lymphoma.
He had 6 cycles of chemo, of 5 days each, initially. Tests in April found the lymphoma hadn't all gone. He returned for 2 more much stronger rounds of chemo, and had a stem cell harvest in between them, incase he needed a transplant in the future. Declan was given remission on the 4th August 2016, 3 days before his 15th birthday, but still had to undergo 13 days of radiation treatment.
Declan is a gamer, loves Anime and TV shows like Arrow, Flash, Jessica Jones & Daredevil.
He is full of Sass and extremely brave, he is our hero.
Love forever and a day.
Mum Dad, Zac, Smudge and Lilly.
Thank you so much for sharing your amazing young man with us. Declan you shouldn't have had to go through this and we will keep fighting to raise awareness so everyone will listen and improve the amount that is spent on research into childhood cancers. Keep well and good on you for a truly great battle.
Love Keely x
Our amazing Golden Octopus Hero is our amazing Edmund. His beautiful family have happily shared his story with us which is wonderful.
Edmund's story as told by his beautiful Mum Natasha, Dad Andrew, twin siblings Oliver and Grace and Taz, Bunny and Tiny
Just after Christmas this year, we noticed Edmund had a bump on his forehead. We assumed, being a nearly 2 year old boy, that he had bumped his head on something. After a few weeks, the bump had not gone so off to the GP we went. Thankfully we have an amazing GP who decided to get it checked out just in case, ......... well from there there was a whirlwind of tests to finally come to a diagnosis of LCH (langerhans cell histiocytosis).
Edmund had surgery to remove the lesion in his head which has eaten a hole in his skull and attached to the lining of his brain. For now and hopefully, forever, that is all the treatment he needs, he will get checked regularly to ensure everything is going to plan but so far so good. He has been an absolute superstar through the whole process, and all the staff at the Royal Children's Hospital Melbourne have been amazing. Edmund is known as 'Mr Cheeky Pants' by his 4 year old twin siblings, Oliver and Grace, and they all love playing outside together.
Our amazing hero.
Love you forever, Mum, Dad, Grace and Oliver xxx
Thank you so much for sharing your amazing son's story with us. This type of childhood cancer is the same as mine and is very rare but there is a lot of work happening in the US to find a cure. We will keep spreading awareness with help from parents like yourselves and the strength of kids like Edmund, Mr Cheeky Pants we will continue to fight this beast together.
Love Keely xxx
Our absolutely amazing Golden Octopus Hero is the fantastic Jesse.
His beautiful family, Mum Bec, Dad Dave and brother Trae, Stoopy, Zeb and Murphy have so kindly shared his story with us.
Jesse's Story as told by his Family
Jesse came down sick last September with extreme temps and a rash. We had numerous visits to the doctor and even a week in hospital with so many tests such as MRIs CTs, ultrasounds and bloods tests over and over, such that he had no veins left except between his toes. All this and still without any tests giving us an answer. They discharged Jesse and 3 days later his eye began to swell. We took him back to the doctor with them saying it was an allergy. When he could no longer open his eye and his temp hit 41.9, we rushed him to hospital. We were then flown to Adelaide by RFDS and that's when we knew something wasn't right. Adelaide thought it was a virus but did a bone marrow biopsy which was inconclusive, so we scheduled another one in a week. All week he spiked 41 temps and all the hospital could do was guve him IV antibitoics and panadol. The second bone marrow was done and thats when our lives changed. He was diagnosed with T Cell lymphoma which had caused HLH .(Hemophagocytic lymphohistiocytosis). So we were dealing with 2 things and the doctor wasn't confident of his survival. Luckily the next day he began chemo and thankfully responded and his temps settled and his eye began to open. Once they had the HLH under control, they began the CHOP protocol of 6 cycles of chemo. Jesse has just completed these 6 cycles and we have our check up on 11th May. As we live 500 km from treatment, Jesse has been separated for long periods from his home, younger brother Trae and his pets, great danes Stoopy and Zeb. He was given a companion toy poodle puppy in March, Murphy who he also misses.
Jesse enjoys playing Playstation and movies and spending time with his friends and brother. Even though it was been tough it has bought us closer together and made us slow down and enjoy the small things.
We used to worry about some stuff that really is insignificant x
He is our champion.
Love always Mum, Dad and Trae.
Thank you so much for sharing Jesse's amazing story, keep fighting little man you have a huge battle but you will get through it. Our foundation is aiming to stop families having to travel so far away from friends and families and it will take a while to get right across Australia but we will get there.
Love to you all Keely xxx
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
Non Hodgkinson’s Lymphoma
Our gorgeous and brave Golden Angel Octopus Hero, who I am very proud to honour, is the amazing Tyrone. Tyrone’s Mum and brothers together with his pets, Buddy, Meow, Bossy and Garfield have so generously shared his story with us.
Tyrone's Story as told by his Mum Eve
Tyrone Kory Eldershaw, aged 6 years old, looked up to his 3 big brothers, Zac aged 14 years, who loves gaming on YouTube and being with his friends, Dylan, aged 11 years, who adores computers & spending time with his Pop, and Brodie, aged 9 years, who loves Sponge Bob & Minecraft. Brodie was a little older than Tyrone, everyone thought they were twins and they never left each other’s side. Tyrone was a cheeky little 6 year old boy who loved laughing and sharing his smiles with those that he would meet. Tyrone loved his garden and took pride in caring for it and loved his family pets of 3 cats, Meow, Bossy and Garfield and he loved his dog, a staffy called Buddy. Tyrone enjoyed playing Thomas the Tank Engine and batman, minions & you can’t forget Mr Maker.
Tyrone grew ill overnight and by the next evening we had the worst news I’ve ever been told. Tyrone had non-Hodgkinson’s lymphoma (Berrkits). Tyrone fought a hard long battle and became my HERO but Tyrone’s heart grew tired 6 months to the day.
On 17/06/2015, we were given the bad news. On 17/12/15, three angels came and collected my Tyrone from my arms. Although I didn’t want to let go, "I heard a whisper saying live for me now Mummy". I carry on each day fulfilling Tyrone’s wishes (to care and bring smiles and support to his friends that are still undergoing treatment). To share his toys with his beloved so he can still bring them smiles as he always had done - Tyrone’s wishes will keep Tyrone’s brothers and I busy until we meet again.
I will be strong and brave as my son taught me and I will fight each day for a cure.
Rest in peace my sweetheart Mummy loves you so much and I’m so proud of you.
Love you always.
Your Mum and loving brothers, Zac, Dylan and Brodie.
Thank you so much for allowing us to honour your amazing son. We will continue to fight as well and share as much as we can to increase awareness so one day our government will listen for our kids.
All my love Keely x
Acute Myloid Leukaemia
Acute Lymphoblastic Leukaemia
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
Our amazing and so cute Golden Octopus Hero is the beautiful Gabby. Her amazing family has shared her story with us which are so grateful for. This is her story as told by her Mum Susan, Dad Kurt, Sister Samantha and Beau the Boxer.
Gabby's Story as told by her Family
On 26th February 2016, Gabby fell ill suddenly with a fever and vomiting. She was taken to the Warwick hospital but was transferred to the Lady Cilento that afternoon. Gabby spent 4 days in PICU having numerous tests which revealed she had Acute Lymphoblastic Leukaemia.
It was the last diagnosis we expected as she appeared to be a well 2 year old....
Gabby spent 2 weeks on the ward before she was discharged. As we are from a rural area, we stayed at the leukaemia village until we were discharged back to Warwick.
Gabby has not been hospitalised since diagnosis, managing to stay well even through her 'intensive therapy'. We have learnt she is one super strong girl. There is still a lot more chemo, lumbar punctures and blood tests ahead. Treatment will continue until May 2018. We can only hope our brave battler continues along the journey as well as she has been.
She will continue to be our hero.
Love forever and a day.
Mum Dad Samantha and Beau xx
Thank you so much for sharing your amazing girl with us, she shouldn't have to show everyone how strong she is against all the treatments and everything that goes with that, she should be playing with her dolls and her dog. Gabby we will continue to fight together, we will continue to raise awareness so funding is increased for research and I will never give up trying. Sending all my love beautiful girl.
Love Keely xxx
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
We have an extra special and absolutely gorgeous Golden Octopus Hero. I would love to honour the beautiful Sophie. Thanks to her wonderful family and my friends Matt, Hannah and Lucas, together with Arlo and Susie they bring you her amazing story.
Sophie's Story as told by her Loving Mum
Sophie was 6 weeks old when we found out about her Retinoblastoma in her right eye. Sophie was 7 weeks old when we flew to Brisbane so we could meet with Doctors to figure out what had to be done to save her life. Then we discovered that she had to have her tumour and her eye removed and replaced with a donor eye as well as a lens that sits in front of it.
Sophie was only 8 weeks old when surgery was done. She was lucky enough not to have to go through chemotherapy but still had to have frequent visits to Brisbane every 3 months for the first two years and is now at 6 month appointments with her last appointment due in July 2016.
Sophie is a strong happy little girl and we are very lucky to have her here today. Sophie has a big brother Lucas as well as her pet kitten Arlo and her fighter fish Susie.
She is our hero. With all our love forever.
Mum Dad and Lucas, with Arlo and Susie.
Thank you from the bottom of my heart Hannah, Lucas and Matt for sharing your absolutely amazing girl with us. I am proud to call this family my friends and Sophie is definitely a true hero. Thank you for everything you all do for our foundation we really appreciate it. Together we can make people sit up and listen and together we can make a difference. Sophie I promise I will never stop fighting for all of you because no one deserves it more than our kids.
All my love Keely xx
Brooke, our Golden Octopus hero is just gorgeous. How heartbreaking to have any child diagnosed with cancer. It's unthinkable to know how it feels to have 2 in one family. Brooke, along with her brother Kael, are true heroes and just beautiful.
Love Keely xx
Kael, our Golden Octopus hero is just gorgeous. How heartbreaking to have any child diagnosed with cancer. It's unthinkable to know how it feels to have 2 in one family. Kael, along with his sister, Brooke, are true heroes and just beautiful.
Love Keely xx
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.
Love always Keely xx
Acute Lymphoblastic Leukaemia
Kacey's Story as told by her Mum
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
Mums & Dads
They are our Heroes too xxx