An oncology fellow and a different oncologist came to our small hospital room a couple days before my BMT and took my mother out into the sterile smelling hall and once again let her bear the bad news all by herself.

​They had found an abnormal, possibly cancerous, lymph node in my upper thigh from a previous recent PET scan and some possible cancer cells in my bone-marrow. I was happy and clueless, feasting on a pizza while my mother was in another room sobbing her heart out. ​

Editors Note: The preparation for a BMT (in Tamlin's case 2 years of chemo in 5 months) is to clear the body of cancer in order for it to receive the donor Bone Marrow. The rarity of Tamlin's cancer meant her treatment team had to prepare for the worst while hoping for the best. Tomorrow Tamlin adds radiation to her 'to do' list. 

​They say that sleep fights cancer, so you would think they would let me sleep in, right? No, because apparently, I must “eat”, even though I’d just throw it back up, and take my ”poison pills”, like pfft.

Treatment was soul-wrenching and just all out exhausting, emotionally and physically.

Twice a week for weeks on end, they would inject chemicals into my bloodstream or the area of my brain. Along with the chemotherapy were the bone-marrow biopsies and lumbar punctures; they would lull me to sleep with gas while they told jokes and chattered away trying to distract me while I pleaded for them to stop the oncoming blackness. I would be clenching my mother's hand as a last desperate plea before having the darkness take me over fully. In the last few seconds, before the never-ending blackness, was the scary part, the part when I hoped I would wake up. I always did wake up, but that never stopped me from crushing my mother’s hand the next time around.

​While I was in complete oblivion, they would drill into my hip for bone marrow and stick a needle into my spine to test my spinal fluid to see if the cancer had spread in the few days in between each torture session. 

The yellow chemotherapy would hang next to me in an IV drip while I dreamt about a normal life. As the poison dripped into my veins over an excruciatingly long time, I thought about how I deserved it, how I deserved cancer. I thought about how I had brought it upon myself. That I wasn’t grateful enough or that I wasn’t doing enough, simply that I wasn’t enough. 

They would then send me home with radiated chemotherapy tablets or injections filled with poison that I could touch but others had to gear up to get near. We would arrive bright and early and leave in the dark of night on those days.

The nurses made my days okay. They were the upside to the downside of my days, I got to know them as they got to know me. They taught me about unimaginable compassion and overwhelming kind-heartedness. I learnt about how everyone has a breaking point and how they can be glued back together. All I have to say about them is that it was an honour to be their patient.

 ​While getting my doses of poison and stabs in the back, I met some amazing people in unfair, gut wrenching situations. On Tuesdays there would be a little girl sitting in a green wagon, oblivious and unable to comprehend the devastation floating around her. I later saw that she had grown an explosion of fiery, red hair that matched the fight she was waging.  

On Thursdays there was a mother and her infant baby. I will never get the poor baby’s wailing out of my head as nurses and doctors swarmed, attacking her in attempt to save her unlived life. 

We weren’t alone, after a few weeks of enduring the miserable torture that saved me, we were unknowingly adopted into an understanding, sympathetic family. The 11b family (editors note - 11b is the inpatient oncology ward at Lady Cilento Children's Hospital where everyone is indeed a family forged through a shared battle) 

The treatment for the skin graft on my leg was simpler. Dressings once a week to see how the skin graft was going. Those appointments were soon increased to twice a week, this was due to the Alien Juice. 

​​My skin graft wound would produce fluid and it would soak through the bandages and drip down my leg. We wrapped towel after towel, day after night around my lower shin, but it would still seep through. After weeks of unconsciously drenching my sister’s sheets and mattress, we went to the next unveiling of my Zombie Bite to find it had gotten infected in the few short days between our appointments. 

The Plastics day nurse, riddled with wrinkles and age, cleaned up the ugly, gooey, yellow mess. It was concluded that the half-healed, now infected wound (Zombie Bite/ex-Alien) was to be dressed with a new, clean dressing each and every day.

Entering: The HITH Team (Hospital In The Home).

The HITH team showed up on my doorstep every morning without fail; rain, hail or shine. They looked after me from gross infections to line care. As the months went on and my leg healed, my relationship with them grew. From conversations about olives and batman cakes to bracelets from Africa,

I became a part of their family, too.

Editors note: Join Tamlin tomorrow for a plot twist. To begin a bone marrow transplant you need to have blasted the cancer into MRD (minimum residual disease) with chemotherapy - in Tamlin's case 2 years worth of chemo in 5 months. Her plot twist? The cancer had set up camp elsewhere in her body.

Below is a video of a small number of our 11b family talking about Bravery. 

Editors note: As Tamlin says what comes next for her is indeed worse than the initial treatment. Adults who have undergone BMT protocols have told me they would have willingly died rather than live another day during BMT. Children's protocols are no kinder than adults and at times more aggressive because we're trying to win our children another 60 or 70 years of life instead of another 10. 

​Tamlin writes a more optimistic story than that, but I wanted to pause here as a nod to her extraordinary ability to look back on her treatment and see the optimism, see people's love for her and believe in her tomorrow. 

Tomorrow Tamlin shares her story of high dose chemotherapy in preparation for BMT, the healing of her 'zombie bite' (the skin graft where the alien once sat) and her fear falling into the dark place that General Anesthetic send you to.  

​We were in the ER for quite some time, but we were used to it. My Alien used to get ‘infected’ all the time: it would turn red, hot and sore. Antibiotics helped it and within a week I would be able to walk on it again. Boy did I wish that antibiotics would have solved my burst Alien.

We were there for hours by the time I had gotten out of my shocked silence and had had maybe 4 different- give or take- medical teams pass us off to the next.

There was the ER Purple Team who called the next team; The General Surgeons' Team who, too, passed me on to someone else. We finally received attention from a Plastic surgeon fellow on her way out. She was beautiful; she was tall with light blonde hair twisted artfully into a bun, she spoke softly, but reassuringly.  She came up with a game plan and sent us to the ward for the night, that ended up being my home for 2 ½ weeks.
​
Her game plan didn’t exactly go as smoothly as we’d all hoped, but it still worked. I didn’t get to surgery the next day as we had planned but the day after.

My Alien and its blackhole had been growing for the past 1 ½ to 2 years and nothing we did stopped it.

We had had a previous surgery performed by a trusted surgeon, who had saved my oldest brother and potentially my twin's life. He scraped out the in-between-fluid-and-solid bruise-like lump. He told us that he had never seen anything like it but to breathe easy, it wasn’t cancerous. Alas, it grew back within a couple of weeks like it had never left. That intrigued the tall fellow.

The surgical plan the Plastics Team came up with was to quite literally cut a chunk of what remained of my Alien out of my leg and send it off to pathology to test. In the time between the surgery and the results from pathology came back, we had yet a different medical team visit us; the Infectious Disease Team, not a very reassuring name. There was two of them and they were both kind and fabulous doctors. They didn’t do much except take a few samples and the story of how my Alien and Blackhole came to be.

The pathology came back a few days later.

​The tall, blonde plastic fellow told us on a Friday night.

​I had left my room with 3 of my siblings to go do something fun. We had left my mother there in the quiet, by herself, reading her book. I wouldn’t have left if I had known the fellow was coming with such heart-breaking news. My mother soon tracked us down and pulled me away and out into a corridor where the fellow explained, in a bunch of complex medical terms, what pathology had found- lymphoma.

At first, I was confused, then I saw my mother's eyes. They were filled with sadness and tears, I heard the words “abnormal cells”. After the surgeon fellow uttered those few life changing words, my ears stopped working.

​All I could hear was this buzzing sound that got louder and louder with each word that left her mouth. I vaguely remember my mother putting a hand on my thigh and holding the other. I wanted to cry but I didn’t. I didn’t because my siblings were less than 50 metres away; I wanted to protect them, hide this ugly mess somewhere where they couldn’t see it, my mum was already breaking. I just nodded and kept swallowing the big lump that had made a home in my throat.

​
My siblings came out soon after and I couldn’t look at them, not without shattering into a million unfixable pieces.

I didn’t need to tell them. I didn’t need to. They knew. They just knew.

It wasn’t very hard to put together after daydreaming about the worst for a week. It was the first time I had cried since I’d been admitted the week before. It was a night where I didn’t tell my mother to go home and parent my siblings that night. My brothers and sister caught a cab home to their respective places while my mother and I curled up in my uncomfortable hospital bed and sobbed. Truth be told, we didn’t stop.

That weekend was full of ‘whys’ and snotty tissues.
 

The Plastics Posse had another battle against my shin and removed of what remained of my Alien. They took yet another chunk out of my leg creating a great, big dent that went down to my bone, destroying all muscle in their path. They harvested and finished with a skin graft to cover my gigantic wound.

Once again, they sent the specimen off to pathology to confirm their diagnosis of lymphoma to see how much it had invaded my leg.

On Monday there was a different team standing at the foot of my bed, crowding the room: The Oncology Team. They explained to us the rough outline of the treatment plan for lymphoma that I would have to undergo. They didn’t explain that our lives would change or that they would for the better.

I do wish that this sentence was instead ‘I got the treatment and lived happily, healthy ever after.’, but it’s not.

The Oncology Team came back a couple days later with the most recent pathology of my ex-Alien lump. They had a new diagnosis. Blastic Plasmacytoid Dendritic Cell Neoplasm, or BPDCN for short.

They also had no clue what it was and for my treatment plan they were going by their gut. 

Editors Note: BPDCN is a very RARE cancer. To date there have only been 11 other cases located worldwide, 5 surviving. The trickiness of a rare cancer is the treatment team having no known treatment protocol to work from and no efficient way to predict the progress of the cancer. What this means for the patient is progressing with an often aggressive treatment and far more exploratory testing so the team can understand the effectiveness of treatment and the progress of the cancer. 

Tune in tomorrow to learn about the first steps in Tamlin's treatment.

On a February afternoon in a peaceful street, you could hear my screaming, my neighbours yelling, my mother shouting instructions at my sister. On a February afternoon in a peaceful street, you could see my neighbours jumping fences to come help, my family running back and forth from me.

On a February afternoon in a peaceful street, there was an old house, where lived a girl whose world had just changed forever.

They say that some silence is deafening and others peaceful. The car ride to the hospital, I found it peaceful, whereas my mother would have described it as deafening. To have silence where questions were normally posed, where words to a song were sung off-key, or where the names of cars were shouted, I suppose would classify as deafening. I don’t remember much of the car ride there. Just sitting with my leg out in front of me, clothed in a towel rag. I remember clutching my doll and faintly, Taylor Swift music. The only time the deafeningly peaceful silence was interrupted was when my mother would ask me if I was alright, double-checking that I was still alive, that I hadn’t slipped away for some reason.

As I waited in the pre-emergency area, this family walked by lead by a nurse. The dad had a BALD boy in his arms, wrapped -almost lost- in a blanket. They walked straight past me, but the mother, however, cast a warm, tired smile at me. I smiled back and thought about how I was just probably going to need stitches, how lucky I was how I wasn’t a cancer patient.

I just had to tempt fate, didn’t I?

Tune in tomorrow for Tamlin's story of her ED admission, the surgery to remove the Alien and what pathology thought of her rare presentation. 

In the Easter school holidays a bunch of BRAVE kids, their family and supporters launched our Team T-shirt project: This is what BRAVE looks like. We launched the Team T-shirt project to helps kids feel connected and included in their world but it's had a much further reaching effect. Kids are choosing to wear their shirts when they have to dig extra deep for their courage. They wear them on days they know they have difficult or painful procedures, when they need to brave up socially and one very precious girl's family chose for her to wear her Team shirt after her passing so she could be forever Brave (#piperbrave). You can support a child with cancer and buy them (or yourself - we all need some extra bravery sometime) by clicking the shop link below.

If you are the parent of a child in a photo you can send a request for a high res copy of their photos to hello@braverybox.com. Each photo has a caption of the photographer who captured the image and a photo number, please quote this in the email. 

The best laid plans are often scuppered by a surprise hospital admission. We headed up to the oncology sleep over ward after our BBQ to visit the kids and teens who missed out on the sunshine. 

​This month I have gathered my sadnesses together, lined them up and asked them to take a number, be patient, I’ll get to each of you in good time. The volume of sad this month is a tsunami and too great to feel on the fly. I’m going to have to schedule my sad and unpack it bit by bit. Pack a lunch Tanya because it’s going to be a long trip. While I am sad I have NEVER felt alone with great thanks to you, our Bravery Box supporters, our Bravery Boxers.

This parenting of a child with cancer gig can be tricky. Days and weeks can go by when I feel capable and our daughter is well and our friends are doing well and our new normal is very livable and I soak in gratitude for our silver linings. 

​In my heart lives hope for our daughter’s future. There’s plenty of room in this hopeful heart of mine; in there lives the future of our friends in treatment, hope for those friends finished treatment to maintain their health and remission and for their parents who have become my friends to get through this whole. This part of my heart dances and laughs loud and celebrates the wonder of  a moment.

​My hopeful heart also holds an unthinkable sadness for the children and teens in our world who don’t get to grow up, I hold fear for our friends when their cancers become complicated and I hold a grief that I haven’t yet completely unpacked for our own daughter who has battled brilliantly and continues to battle with so much treatment still to come.

​It is times like now when I feel the weight of our world, where a straight spine is hard to come by and I just have to stop and share my weight with others and it is times like now when you save me.

Thank you for supporting Bravery Box, every donation, every word of support is a lifting of the weight of our world. Every time our child chooses something from the Bravery Box we feel supported and recognized by you and our weight is lighter.

​This week our world has felt supported enormously. A business has been in touch and asked to star the bravery box on their work shirt sleeves, a support group has pledged $500 of iTunes vouchers to our teens, and yesterday a beautiful soul donated a crate full of ‘parent and carers’ care packages (a little out of our remit but I am delighted to deliver them to the inpatient ward on Mothers' Day).

For me these awesome acts of kindness filled my very bones with the care of others.  These beautiful gestures helped me remember that it isn’t just the parents in this world who share each other’s pain, it is each of you who stand up and tell us ‘not on your own’ with each act of kindness. In a month where silver linings have been hard to come by, the support for the Bravery Box shows me that we have an army of people behind us whispering to us ‘Not on your own’. 

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 - 

• To raise awareness for childhood cancer by creating genuine, supportive connections between children and teens in oncology and the public.
• To begin to immunise all children (not just oncology children) against anxiety by providing quality social and counselling programs to teach children how to choose bravery.
• To fundraise for childhood cancer research.

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
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 hello@braverybox.com using the job you are interested in as the subject header.