Earlier I said it wasn’t my family’s fault, but it is.

I have no one else to blame but them for the fact that I laughed, felt loved and made it through 2017.

It has everything to do with them that I am here on a Wednesday night at 10:41 pm, hours away from a birthday I wasn’t sure I would get to celebrate. Without them, I wouldn’t be here 6 months and 4 days post a (successful) BMT.

I would be lost without them and I much rather we all be lost together.
 

Tamlin the hero of our story. 

Meet Lara. Lara was diagnosed at 6 years old with Acute Lymphoblastic Leukaemia. She is now 7. Her treatment will continue until just after she turns 9.

Lachlan, 12 years old, Ewings Sarcoma. 

Editors note: Welcome to almost there. Today Tamlin begins to look up and see more than months and months of treatment. Today Tamlin gets the news that she can leave the hospital. 
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​Editors note: I am so excited about tomorrow's entry. Tomorrow Tamlin goes home. She feels wrapped up in love and in hope. Tomorrow Tamlin is also sharing her space with other children and teens from Lady Cilento Children's Hospital's oncology unit in a massive photo collage of each child before treatment, during treatment and after treatment. 

​In preparation for the new bone marrow, my first 3 days in BMT were filled with radiation.

I was the exception to the rule of entering the BMT phase clear of disease; if we had waited, I would have died.

I would start the day and end the day lying on a mould made specially for me, embracing the thing that could give me skin cancer and severely damage my organs, in a last desperate hope of ensuring that I had no (BPDCN) cancer cells remaining, hiding away somewhere in my body.

It was a last, hopeful, attempt to rid my body of the remaining cells that were in my bone marrow.

​Even though I was being wheeled everywhere I was exhausted. I had no idea that this new level of exhaustion or desperation had existed. There were days where I would almost fall asleep in the bath or on the toilet.

I would wake up at 8:00am and take my foul medicine that seemed to be coming by the bucketful.

Thanks to the radiation, my throat and mouth was more ulcers and mucositis than anything else leaving me unable to eat and drink. Because I couldn’t eat, or drink and I was only having the occasional Paddle Pop, action had to be taken.

The nurses tried to snake a nasal-gastric tube through my nose to my stomach, they tried this a total of 3 times before they realised I would just keep throwing it back up. It was soon decided that I was to be hooked up to an IV that supplied me with the nutrients I needed.

My days in transplant were mostly spent falling asleep on my mother while watching a tv show or a movie. When my dad came to look after me, however, we would play scrabble or read.

One day, the day I was getting my new bone-marrow, I had the scariest moment of my life. 

My dad, after being away overseas, was looking after me while my mum was with my brother when I started vomiting blood. There was no warning or specific cause, just the way BMT knocks you around.

Nevertheless, seeing this red substance come spitting out of my mouth made me think I was dying; that the cancer was winning, defeating me. I remember my dad being in the corner of the room to being right beside me rubbing my back while whispering that I was okay, that everything was fine.

Soon there were what seemed like seas of nurses, when my mum arrived. She was easy to pick out; like black in clouds of white.

Turns out I wasn’t dying. It was a side affect of all the medication and radiation they put me through.

I received later that night 1284mL of new, non-cancerous bone-marrow.

Editors note: The spectacular non-cancerous bone marrow was gifted to Tamlin by her big brother. Anyone in the know is astounded to hear the size of his donation, 1284ml is an enormous gift. Given her unique situation of still harboring cancer cells they needed Tamlin to receive as much bone marrow from her brother as possible. He tells me he gave it willingly to save his sister. 

Not all bone marrow recipients are lucky enough to find a donor within their family. They often have to gratefully accept an international donor. If you are a blood donor in Australia, thank you. Being a blood donor doesn't automatically put you on the bone marrow registry. Next time you donate, PLEASE ask to be on the bone marrow registry - they take a small extra vial of blood and the results are stored and donors are searched internationally. You my never match a recipient but in the case that you do you will be saving a life in a very real, very immediate way.

Call the Red Cross on 13 14 95 to make an appointment or click the button below.
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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.
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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.

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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.