This memory came up on my Facebook feed, it reminded me of why I write so much ‘random stuff’ down. This, writing the wanderings of my mind, unedited, helps me navigate through all sorts of situations life shares with me. I am so grateful I started doing this 4 years ago, it’s made the more challenging experiences a little less heavy to carry.
A day like any other…. Well a day better than this time last year and worse than this time two years ago, but another day, pretty much the same as the day before.
This time last year Dylan was in hospital having blood transfusions, IV antibiotics, a wide range of medications, he was a little lighter weighing in at 40kgs, and vomiting two to three times a day. He was half way through his chemo, and looking forward to finishing treatment and Continue reading “Another Day”
Dylan, now 14 years old, was diagnosed last year in June with Medulloblastoma, an aggressive malignant brain tumour. After undergoing high risk brain surgery, 6 weeks of daily radiation, 4 months of intensive chemotherapy and countless other tests, procedures and medications he is now 9 months post treatment with clear scans. Still suffering side effects from treatment, he took up the challenge to raise some much needed funds for childhood cancer research. (Better treatments are desperately needed). Continue reading “Be The Change – Hit the Sweet Spot”
“Be The Change
The experience of childhood cancer is a complex tapestry of different emotions, ranging from helplessness to inspiration. It’s within this kind of challenge life hands us opportunities and gifts in a place we would never choose to be.
In the darkest of nights we find the brightest stars, and that’s just what I found in our experience with childhood cancer. Encouragement, support and inspiration coming from others who’ve turned pain into purpose.
Over time I’d like to share some of these inspiring stories of people who shine brightly while creating change.
With deepest gratitude to you all, Michelle
@The Other C Word
Awareness=Funding=Research=Treatments that HEAL and do no harm”
The Super Max & Bryce project
This is a story of one of those stars, or perhaps rather a constellation of stars, making the lives of those suffering a little brighter, sharing magic, hope and love through a special little night light called “Super Max the Turtle.” This special little night light, created by Cloud b, is designed to be easily sanitised it can be taken into all hospital environments to help bring peaceful and healing sleep to children in treatment. Continue reading “Be The Change – It’s in the Stars”
Craig’s K’s for Cancer
Craig is walking his talk or should I say talking while he walks as he spreads awareness for childhood cancer and raises vital funds for charity.
Raising much needed funds for both pediatric brain cancer research and Ronald McDonald house this father of 4 knows the sufferings a family experiences with a child diagnosed with cancer.
We shared his son, Aaron’s story in September. Aaron has just recently finished his treatment for Medulloblastoma an aggressive malignant brain tumour, the family spent months (255 days) away from home, staying at the Rondald McDonald House in Parkville while Aaron received his intensive treatment. This experience showed the family how vital a safe and supportive ‘home away from home’ is during such a life changing time, it provided the family the opportunity to stay together while Aaron underwent treatment. Knowing that brain cancer is the number one cause of death by disease for children in Australia and having a ‘front row seat’ in the fight against brain cancer it’s easy to understand why this family feel funding for pediatric brain cancer research is so vital.
The face behind the smile.We often hear comments about smiles, these smiles remind us that these are children first and foremost, they are children who want to enjoy their childhood with all the innocence and laughter childhood brings. Sadly in the world of childhood cancer much of that innocence is replaced by the harsh reality of life with all its ups and downs, successes and losses. Those moments are rarely seen in a photo or on a video.
That smile has nothing to do with cancer, it’s only there because this is a child, who no matter what traumatic experiences they have endured and will continue to endure will still smile, because in amongst the pain and suffering there is joy and love, there is childhood. Continue reading “The Face Behind The Smile”
The final 21 faces of courage have been shared.
And just like that, it’s done, end of treatment or there’s nothing more that can be done. “Come back in three months time for blood tests, scans and an oncology appointment.”
Another 21 children’s stories have been shared, just the barebones of their experiences, a snippet of their journey, barely scratching the surface of what childhood cancer is.
It’s truly been a soul searching experience for me personally, I’ve cried almost daily, questioned myself and my intentions, felt angered and frustrated, as well as honored and humbled. I questioned my beliefs and wondered about hope. I experienced disappointment, I’ve felt like it was a battle that could never be won. I have learnt to persevere, beyond myself for something that is more about others and less about me.
Every day for the past 10 days I write and share these stories of children, some who are still enduring treatments, some who have come through the other side and some who have passed away. It’s been exhausting, it’s relentless, it’s heartbreaking, it’s what I remember my hours felt like when Dylan was going through treatment , and this is part of what these parents, the ones before and the ones still to come experience when they have a child with cancer. Continue reading “Faces of Courage – Childhood Cancer Awareness”
As 2016 draws to a close I was very tempted to say my “Thank F…ing goodness it’s over, what a crazy year it’s been filled with so many sad events” BUT my mind drifted to the joy, the courage, the incredible experiences, the amazing lessons, the unconditional love and kindness I was gifted, the time and generosity of those close to me and those I am connected to in spirit but yet to meet in the flesh. Both strangers and friends have enriched my life this year.
So many beautiful babies were born this year, lovers secured their commitments to one another, people went out exploring, on magical adventures, changed directions in their lives, achieved their dreams, shared special moments, comforted each other in moments of sadness. All plans became little floating bubbles, no rigidity at all. There was illness and healing, and well, so much more, we are living an extraordinary life with all its ups and downs and twists and turns.
How fortunate we were that we got our Australian citizenship at the beginning of this year, a dream I have had since I was 6 years old.
How fortunate I followed my intuition beyond the fear of judgement and posted on Facebook asking for help, I listened and then took action. Dylan’s life was saved through the efforts of many, what incredible things we have learnt, not just the medical mambo jumbo but the human stories, the compassion, the commitment, the generosity …. I could go on and on.
Gifted the opportunity to shed my armor and be vulnerable, and witness the magnificence of the human spirit, the courage of children, the love between brothers, the presence and acceptance of little people on massive journeys.
How fortunate I feel that no matter the physical distance I am still connected with those I love, technology has most certainly helped enrich my relationships, bridging time and distance, especially at those times of crisis but also times of shared joy.
Both tears and laughter have been my constant companions this year, how grateful I am that I can feel such depths of emotion.
This year has been profound, both terrifying and magnificent. I know, I love, I laugh, I am more because of these experiences.
Thank you for the music, and the incredible ride.
Ps the roller coaster was thrilling I am now ready to have a go on the ……. surprise me, I trust you!
This year was a little bit Twisted, as my world began to Unravel I had to learn to dance to the music of the universe, finding a way back to my essence has been a journey worth traveling. I am here now, I see my wisdom, as my perception colours my reality, I will always reserve the right to change, grow, expand and evolve.