Forever in our Lionhearts.
Charlie’s Story.
I’m Kelly. My husband and I were blessed with two beautiful boys. From the moment Charlie was conceived, his big brother adored him. He knew he was getting a best friend, he would cuddle my belly and sleep tucked in to me always giving Charlie all the love he had. From the moment Charlie was born the boys were inseparable. They were both little menaces, always into everything, now I know why “BOYS” are hard work. But watching them together just made my heart sing. From 12 months of age, Charlie seemed to always be sick, snotty nosed and watery eyed but we just put it down to him building his immune system just like our other son had done. But when we would go to the Drs he would have multiple viruses on top of one another. Little did we know this was the beginning of a long heartbreaking journey. Three months later, Charlie developed a small lesion on his eye, resulting in 6 weeks of investigations including an eye biopsy, blood tests and multiple scans. 6 weeks later he was diagnosed with AML (Acute Myeloid Leukaemia). To say we were shocked is an understatement, we thought this doesn’t happen to people like us. It was never on our radar! These things happen to other people, you hear about it in stories, movies etc. I bet that’s what everyone else in this cancer world says. Well it did happen to us, and it happened to our precious Charlie. He endured a grueling 18 months of intense chemotherapy, bone marrow biopsies, lumbar punctures, countless blood platelet and plasma transfusions, recurring infections, sepsis (where he had a weeklong fever over 40C+) and a bone marrow transplant and. DLI (donor lymphocyte infusion). There were times the medical team thought we were going to lose him but he powered through it all, happily playing, and laughing. Charlie really loved the medical staff; they were his friends because he was isolated from the rest of the world for risk of infection. In January 2020 Charlie got to ring the bell in celebrating the end of treatment. He spent the next 6 months in remission where we all could finally see friends again. Unfortunately as soon as we started our catch-ups Covid happened and we were in lockdown and petrified Charlie would get it. After everything we had been through, the risk was too high so we isolated ourselves again. Then as the restrictions were easing sadly he relapsed, not only in his bone marrow but also in his spinal fluid. It took months to get him back into remission with trial drugs that we had to get on compassionate grounds because they were still in trial. The first one took over a month to be approved so by the stage we could use it he was back at over 80% leukaemia blasts again. Tragically it didn’t work because his leukaemia had become refractory (resistant to treatment). There were a group of Doctors that said he was incurable and that they wouldn’t treat him, but thankfully our medical team were persistent and wouldn’t take no for an answer. We wanted to be able to say we had tried everything. By this stage the blasts were spilling out of his bone marrow and showing in his blood tests, and now his gums were also infiltrated with the leukaemia. Finally on the second trial drug we got him into remission with days to spare both in his marrow and spine! We relocated to Victoria for his bone marrow transplant, leaving our 4yr old back home with our parents so he could continue Kindy but also because of Covid he wasn’t allowed in the hospital so we wouldn’t be able to juggle the transplant unit requirements. With the added stresses of Victoria being in the middle of their lockdown, flying on a commercial plane with a child who has no immune system, in the heat of Covid was petrifying. But we made it, he had his transplant, and he did so well, even if he did suffer from multiple viruses (BK, VOD and RSV) after transplant. Our family including Charlie’s brother came over in December to visit and sadly a few days later at 52 days post transplant he relapsed again. This time AML was in his lymph glands in his neck, and again in his gums. There was only one last option left in Australia to save him but despite some positive signs that it may have been working, his leukaemia was just too darn strong. In this time my husband had been searching all over the world for an answer, we were accepted into a trial in the USA but it would have cost us over $1m to get there and pay for the treatment. We would have considered doing anything for Charlie but sadly just over a month from relapse (day 86) he passed away. We were so thankful to be relocated back to Adelaide via the Royal Flying Doctors a week before Charlie passed, being able to enjoy 5 days in his own home, with his own toys and sleep on his fire engine bed again. Friends and family came to say their goodbyes and in his last hours the four of us as a family, held his hand, read his favourite story, told him how much we loved him, how proud we were of him and that it was now ok for him to rest.
Tylers Story.
Tyler was born in April 2016 and diagnosed with a brain tumour (medulloblastoma) in August 2018 after months of doctors visits, ‘ear infections’ and antibiotics. Brain surgery, chemotherapy and radiotherapy ensued which all had their challenges as you can imagine. After brain surgery, Tyler couldn’t move anything himself but his head because of the swelling but as that went down, he regained some movement and with help from physiologists, speech pathologists and occupational therapists, was able to eventually walk with little support and could communicate a lot better. Tyler had an MRI after all treatments which showed no sign of the tumour, however in September 2019 his movement began to decline again and the wonderful staff at the Women’s and Children’s hospital sent us for another MRI which found that the cancer had returned in multiple places in his brain and spine and could no longer be treated. In Tyler’s last month and with his limited movement, we did as many enjoyable things as we could with him and were planning a party with Make A Wish for him which was changed to Paw Patrol characters coming to visit us in hospital with all of his loved ones around. A few hours after everyone left, Tyler passed away with his mum and dad there with him. He was a loving and cheeky child who would always be up for being silly with me and who’s strength and resilience will always amaze me.
Tyler only got to come and play at Lion Hearts Learning a few times but we felt so welcomed and Tyler loved being around other children, so I know he had a great time!
Ryans Story.
Ryan Hodges is a beloved friend of ours who we sadly lost on 31st October 2021. He and his wife Helen were involved from the inception of River Murray Roar and we value their input greatly. Ryan's memory and legacy will live on always throughout River Murray Roar.
Ryan, you will be there with us in spirit, cracking jokes and making us laugh. We are all so blessed to have been a part of your life.
Thank you to Helen for your input, positivity and strength. You are part of our community now and always. It is only fitting that your words are placed here;
In Memory of Ryan Hodges from the words of his beautiful wife Helen Hodges;
4th November 2021
On this day, 7 years ago, Ryan was diagnosed with Stage 4 lung cancer. Today, exactly 7 years on, it is with sadness I write to let you know that Ryan passed away on Sunday 31 October.
Ryan always talked about whether he should celebrate the anniversary of his diagnosis, or not. He decided that this year, he would celebrate. He had a note in our shared diary which read “7 year anniversary – celebration to be planned”.
So, today, we’ll remember and celebrate Ryan’s life, all that he achieved, and all that he was. Over the last month alone, he got to do some really great things and have some of the best experiences of our lives.
Early in the month, his mates arranged a group head shaving event to show their support as Ryan prepared to lose his hair from radiation. I know that how much act of camaraderie meant to Ryan – it meant the world. He felt loved and supported during the most challenging, isolating and frightening time in his life.
In the middle of the month, Ryan spoke at the Pink Yellow and Blue Carnival. Public speaking was something he loved to do, and he had one last hoorah, speaking in front of 700 people. He spoke about the importance of the work being done through Flinders Foundation and the Precision Dosing program, how much the research has benefited him and how he wants this work to continue to ensure “my son doesn’t have to grow up with the fear of cancer”. He had nearly 60 friends there supporting him that night. I know that meant a lot to him.
And then, just two weeks ago Ryan, Ollie and I had an amazing Holiday in Palm Cove. We created memories I’ll cherish forever.
We will remember him, and miss him, forever.
Brads Story.
Brad was a big part our River Murray Roar family and sadly passed away too early in 2023. Our thoughts are with his family, friends and Teal Phat team members. RIP Brad.
Brad on RMR.
“I’ve grown up going to the river and waterskiing with my family all of my life. My parents were avid skiers and it definitely was passed down to me.
Both of my parents have had cancer, luckily my mum has been cancer free for over 20 years! Unfortunately my dad lost his 17 year battle recently which was tough. Some of the things he and my family achieved in that time was inspiring. All whilst still driving the boat for me to ski!
If I can jump on a ski to try a make these kids and their families lives a little bit better for them, it’s the least I can do. “