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.”
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”
This September I will be sharing over 50 individual children’s experiences with childhood cancer, it’s been an extremely humbling experience putting this together.
In the spirit of love these parents have entrusted me to share snippets of their child’s cancer experience in the hope that more awareness will be created around this devastating disease that is largely underfunded and under researched.
“It’s never about sympathy but more about understanding and acknowledgment.”
Awake and Aware
“we all get rocks along the journey, they’re all gems in their own right”
Dylan, my 13 year old son and I started an Instagram page a month or so ago, sharing his ‘treatment’ journey, to help create awareness of childhood cancer. This journey is pretty hectic and I have found that sharing short and fast is easier rather than a longer piece written on a blog, so haven’t written much here. But Instagram is our shared page for sharing and my blog is my space for sharing. I still honor and respect that this is Dylan’s journey and so I get his ‘approval’ before I share anything publicly, but I suppose I can share differently in my blog.
It’s been 6 months that we’ve been on this crazy ride and I recently shared a collection of ‘the face of childhood cancer’ of Dylan, and realized that we are still not really sharing all of it, I’m not sure the whole picture can ever be shared, but in our quest to raise awareness I write this short blog and share it with you all.
I can’t share photos of Dylan in pain, crying, frustrated, sick, confused and afraid because at those moments I was holding him, comforting him, drying his tears, wiping his head, holding the vomit bag, having him squeeze my hand … There are accidental shots, very far and few between that capture the rest of the reality behind the smile. Maybe this is why we have half a picture of what childhood cancer really is.
Childhood cancer doesn’t end after the last radiation or the final chemo drug is injected. Children’s bodies and minds are not fully grown, so the treatments they receive have very far reaching consequences on their lives, forever. When Dylan has his final dose of chemo, his journey changes,
it doesn’t end. I share this not for pity or sympathy, but for awareness, I share this for the others who will encounter this path in life, for the ones who won’t, because I never knew this world existed until now, perhaps sharing this will bring that one day closer, the day where treatments are only helpful and not harmful.
Our only intention is to create awareness. Help us make a difference to the future of Children who will travel this path, share the awareness, be the change.
‘This kid is definitely walking this path in presence and peace with courage and acceptance.’