Childhood cancer came completely uninvited into our home but he did come bearing some remarkable gifts. The one year anniversary of our daughter’s cancer diagnosis is fast approaching and you know what? We’re not giving cancer his anniversary. He is an extraordinarily unwelcome house guest and he doesn’t deserve the day. We celebrate, we are saddened and we live in the moments as they happen, cancer doesn’t deserve his day and we refuse to give it to him. I will however give him this reluctant letter of thanks.
In my 20s a friend and I used to debate the Chinese proverb “May you live in interesting times”. We debated – Is it a curse or is it a blessing? I can now tell my 20 something self what we didn’t consider back then. It is both a curse AND a blessing for my family are indeed living in interesting times and it is horrific and it is beautiful.
The horrific part of the story is a story well told. If you’ve been around the internet you’re all over the cursing part of childhood cancer. It tells of living a reality of your child’s possible death, of signing off on drugs that are known causes of heart disease, kidney failure, liver disease and (I see the irony) cancer. It’s a story of knowing the death of more than one child, of chemo toxicity, of being in hospital for weeks and seeing friends in hospital for months on end.
The lesser told story is the beautiful part. Our daughter’s diagnosis has opened up our world to incredible beauty. Relationships of deep understanding and compassion, a personal capacity to see what is truly important and a profound understanding and appreciation of pain.
I used to think that the sun rose and set with happiness. I worked hard to be happy and keep my family happy. Now, I realise every emotion is equal and deserves the same rights, respect and welcome I give happiness. This has softened me and made me feel less brittle in a crisis and less likely to lose my sh*t when my kids can’t find their school shoes and other small fry.
This beautiful cancer introduced us to a Lara that we may never have met otherwise. At 6 (undergoing a high dose steroid pulse) Lara described depression to me “Mummy, happiness lives inside of me. Then the darkness comes. I sit in the dark and then it goes away and I am happy again”. At 6 she was telling us how to support her depression – just sit with her in her darkness and keep her company until it passes. This gifted us an insight into pain of all kinds. It isn’t my job to solve someone’s sadness, it’s not in my capacity but I can make a difference simply by sitting with them and sharing their moment.
Cancer has gifted our daughter a rare and insightful bravery. At 7 Lara talks about the fear of pain being worse than actual pain itself and tells me that she’s going to go into a procedure NOT thinking about possible pain but waiting to see if it will hurt, this time. Lara can quietly go limp and ‘melt into the bed’ to facilitate a painful procedure. While we are incredibly proud that she is able to marshal her emotions in this way I want to rage at the world that she had to learn how. We are living in interesting times.
In the shadow of his sister’s cancer diagnosis our son has developed a fierce independence and one of the strongest backbones. He knows himself well and works to make choices that are right for him. Every time we announce ‘plot twist’ when our plans are scuppered by a hospital admission he jumps on board with a quickly packed bag and a ‘who am I staying with?’ Finding fun in the uniqueness of sleep overs and McDonalds drive through dinners and staying with one parent while the other stays in hospital with Lara. He understands his sister’s treatment protocols and works to help her minimise their side effects. His empathy and his kindness and his independence at 9 years old is a blessing from childhood cancer but they have been hard won.
I feel the love people have for us in my very bones. I have often been alone in a room with my sick child (or at home with my well child while my husband is alone is a room with our sick child) but I have rarely felt truly alone. I have developed a trust in others that they will care for us and look out for us even when they’re not in the room. It takes incredible bravery for a friend to support the parents of a child with cancer – our friends who stepped up and the new friends we have made are gifted to us by childhood cancer and they give me a feeling of being deeply understood and cared for.
Our diagnosis story itself isn’t that different to anybody else’s. Lara found an unexplained swollen lymph node in her groin and on the Thursday we ran bloods and scans. Two days later on a sunny Saturday we got a phone call ‘Your daughter has something that looks a lot like leukaemia’. I held it together long enough to get all the facts, hung up and dramatically fell to the ground (very midday movie). My husband, Dave, knew the news without asking. I wouldn’t have predicted it but I was the one who pulled it together and drove us to hospital. Dave told me later he was writing Lara’s obituary in his mind. I’d like to say that the next bit is a blur but it never will be for me. I can still feel every moment of the last 12 months - that will be my curse.
Our blessing is the living of a very honest life, having meaningful and truthful relationships, the opening of our eyes to genuine compassion and pain. Our brave and insightful daughter, her extraordinary brother, the closeness I feel with Dave having nursed each other’s pain are paid for in curse. I’d throw the blessing back with its curse in less time than it takes for my bruised heart to beat. Given a choice I would willingly lead a predictable, uninteresting vanilla kind of life where my family are safe.
Life doesn’t give us a lot of real choices though so what my family do choose is to see the blessing in our curse, they choose that every day and I do love them fiercely for that. So we won’t give cancer his anniversary in our life, there’ll be no more than this letter. We write our life’s story every day, we won’t let cancer or his anniversary write it for us.
Childhood cancer often feels like a mountain, a really big mountain. Sometimes you can feel like you’re owning the climb and sometimes it feels like the climb is vertical and you’re hanging from a rocky ledge with bleeding fingers, your family, job or other trickiness holding onto your legs. What each day has in common is the making of a choice. The choice to hang in there for a while and regain your strength, the choice to smile wide at your children and those around you and lead the team up the mountain, sometimes the choice is to have a solid tantrum or hide in the cupboard eating chocolate.
I know that we are not alone in facing mountains – lots of children and families and individuals have really big not-cancer mountains in front of them and we all make a choice every day in what to do about that. I personally believe that each one of us does the very best that we can every day and I know for me my very best varies dramatically day to day.
This is a collection of messages I’ve received from our Bravery Boxers, their families and their supporters. Sometimes all we need to take that next step up the mountain is to know that we are not alone.
I encourage you to ask yourself and your children "What does Bravery mean to you?". The wisdom of our children (and sometimes ourselves) blows my mind.
ps. I've received SO many contributions. Below is a random selection.
The Bravery Box started as a one-time only toy drive to top up the hospital prize box and has grown so much momentum it could become something truly significant not just to children in Queensland but nationally. To be able to continue serving the rewards boxes and to grow the counselling, promotions and fundraising programs I desperately need help. Jobs available for application are listed below. If you have a very special set of skills that you think would be an AMAZING add on please throw your hat in the ring. To apply for these jobs you don’t need to be an oncology family – in fact we’re genuinely hoping that lots of non-oncology families want to get involved.
To apply for any of the below positions you can send an email outlining your experience (not required for all roles)
What’s the Bravery Box’s bottom line? We engage in activities that will help -
STAFFING (brief job outlines below) - some jobs are filled, MANY are up for grabs.
BB Minister for Everything- Tanya Allan
Toy Fairies- - Area jobs available-North, South, West Brisbane, Gold and Sunshine Coast
(Wynnum / Redlands – Angie Mitchell)
Queen (or King) of the Fairies – Position available (a Toy Fairy could also have this job).
Social Media and Digital Marketing Superstar – position available
Database and Administration Brilliance- Nerida Grogan
Bravery Beats Choir Lady- Keely Reid
Bravery Boxer Coach and Counsellor – Deb Rennick
Graphics Idol (Graphic Design) – position available
To be Granted – Public and private grant application writers – positions available
Bravery Boss Area Chiefs – positions available
Toy Fairies collect, collate and store donations to the Bravery Box. They keep in contact with local bravery box drives, make sure the toy drives have enough marketing resources and answer any questions. When donations come in they will collate into three categories (small people, middle people, teen people). For smaller items they will gather them together in zip lock bags as ‘packs’ and make sure things like journals and colouring in are matched with the appropriate stationery so the item can be used immediately when they are received.
All books, journals and soft toys are zip locked when they are received to keep them clean.
Toy Fairies will coordinate with the Queen of the Fairies and once every 3-4 weeks take a collection up to Lady Cilento.
To be a toy fairy you will require a space in your house for up to 10 plastic storage boxes and be able to arrange for excess to be delivered to our storage unit on Brisbane Northside.
new Graphic Idol – Graphic Designers – If you've like the content of my graphics but WEEPED at the layout this job is for you. This job will be to design any projects that are to be professionally published. Eg. Bravery Box greeting cards, Bravery Gym project cards, a coffee table book of quotes from our Bravery Boxers. First job will be a new logo and helping the website developer with the look of the new website.
Social Media and Digital Marketing Superstar- Plan promotions and social media campaigns.
To start in the next three months after our Not for Profit status has been successfully applied for:
Public Grant Managers – seek out and apply for grants offered at Federal, State and local levels.
Private Grant Manager – annually there are a lot of businesses who grant not for profits funds to achieve their outcomes. This job will be to seek out and apply for existing private sector grants.
Bravery Boss Area Chiefs
Bravery Boss is an emerging funding support program we are developing to fund our programs and childhood cancer research. It is an advertising platforms where businesses who financially support the work of the bravery box through an annual fee can promote their businesses. The general public are getting more mindful of the businesses they choose. When a member of the public choose a Bravery Boss business for new work they are supporting our outcomes without actually donating money to us by ensuring that the participating businesses get value from their contributions and annually renew their support.
Bravery Boss Area Managers will approach local businesses (with a media kit to support you) to ask if they’d like to be included in the program.
We estimate that within the first year of the Bravery Boss program running we can clear over $50,000 for our programs and childhood cancer research.
You don’t need to have a business or sales background to fill this role, full training and support will be provided.
I am VERY enthused about what we can achieve when we really let this idea run with the skills of many more people than me!
Address an email discussing your application to firstname.lastname@example.org using the job you are interested in as the subject header.