"Lost together" describes not only Tamlin's beautiful immediate family but her massive extended family, the Lady Cilento Oncology Family.
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.
Meet our kids and teens from diagnosis to today. Some are finished treatment, some are still in treatment for their first diagnosis, some are battling a second or third cancer (a side effect of treatment) and others are excruciatingly missing from our world.
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.
Angus was dignosed 30th may 2017 with embroynal brain stem tumour. He did chemo radiation 2 brain surgeries and started a clinical trial. He died 25th march 2018 with 9 brain tumors and at least 15 in spine
13 months old at diagnosis
Diagnosed Very High Risk B-CELL Acute Lymphoblastic Leukaemia MLL rearrangement (Relapsed April 18 after BMT in February 18)
Currently in treatment
James in treatment for Ewing Sarcoma.
This is Nicholas when he went thru BMT for his secondary cancer acute myeloid leukaemia, he was 3 years old, he was originally diagnosed at 2. With acute lymphoblastic leukaemia, he is my chameleon kid, he was blonde than went orange and then black curls now he’s back to dark blonde. He’s now 6 years old and still undergoing blood tests every 2 months and being treated for Avascular necrosis due to all the steroid use during treatment.
Nicholas when he was diagnosed at 2 with acute lymphoblastic leukaemia.
Brodie - diagnosed on 07.07.16 aged 9 with standard risk B Cell Acute Lymphoblastic Leukaemia. Currently about to start his seventh cycle of maintenance. 14 months of treatment to go
Ollie was diagnosed with T-Cell Acute Lymphoblastic Leukaemia when he was two years old. He is now 6 and off treatment. He continues to have side effects from treatment.
Caitlin - diagnosed 23/11/2011 aged 8, with Stage 4 Neuroblastoma. Completed treatment December 2012 and has had no evidence of disease since then. Caitlin turns 15 next month
Jake Beckman, diagnosed 20 Jan 2009, aged 5, Stage 4 Neuroblastoma. Finished treatment May 2010. Recently turned 15😊💙🎗
Harrison 16 diagnosed August 2017 (then 15) with Burkitts Lymphoma. Currently post 2nd stem cell transplant (day +48) following refractory Burkitts after initial 6 rounds chemo. Has had both an auto and allo transplant, a bowel resection and a scary time in PICU on ventilator
Kierrah diagnosed with High Risk B-Cell Acute Lymphoblastic Leukaemia 14/7/2017. One and a half years to go.
Kacey - Diagnosed 30.03.17, 15 days after she turned 2 with ALL.
Still undergoing maintenance treatment (until July 2019).
Summer - diagnosed 05/09/2017 aged 2.5 years old with Stage 4 Neuroblastoma. She’s has done 6 rounds of chemotherapy, 10 hour surgery (lost a kidney), bmt, 20 rounds of radiation. Now she’s at next month immunotherapy. 💛
Alliarna Rose -diagnosed at 19 months old on 18th August 2017 with a rare t-cell lymphoblastic Leukemia with all cells mature throughout the blood and bone. Sadly lost her battle at 21 months old.
Matthew Wood a month before being diagnosed with Embryonal Rhabdomyosarcoma Stage 3 Group 3 ( tumour in head ) at age 12. This is Sept 17, he was very sick in October and tumour seen on scan on October 30th
Lachlan, 12 years old, Ewings Sarcoma.
Rhianna diagnosed 18th june 2015 aged 10
ALCL anaplastic large cell lymphoma .November will hopefully be 3 yrs in remission shes currently 13 yrs old
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.
With the help of a brigade of doctors and an artillery of nurses as well as cocktails of disgusting medication; we started to rebuild my immune system, bit by bit, cell by cell.
It’s hard to be happy when you’re stuck in what feels like a prison cell. The days were long and cruel, but we managed. Most of the time it was hard to be positive. If I went online, I could see all these joyous things other people were doing and if I looked outside my window I could see the exact same thing plus the reflection of my encasing room.
When I got the news that I was nearing the end, it was like if there was a god, he cared. I can’t remember being as happy as I was on those last two days in BMT.
When the nurses disconnected me from my “friend”, (the IV machine that supplied my pain killers, the new, untarnished, bone marrow, my nutrients; the very same IV pole that came to the toilet with me), it was like I was being released from jail for a crime I did not commit. I had such immense happiness that I danced, if you can call it that. I just danced. I remember those days quite well.
I was starting to feel more human and less tubes and wires. It was in those last two days when I realised that I was going to live, it was those last two days that made me realise how lucky I really was; I had unconditional support from not only my family and medical staff but everyone around me; from strangers in antique shops to those I knew and didn’t know from school, I was downright cared about.
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.
Editors confession: Editing Tamlin's story has deeply challenged my own story telling. Whenever I tell my own daughter's cancer story I'm reluctant to tell the brutal truth; the vomiting blood and mucus, the ulcers from mouth to stomach, the chemo burns and the toxic poisoning. Thank you Tamlin for your honesty, absent of all self pity. Next time I tell my daughters story I will do her fight more justice.
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.
The rarity of Tamlin's cancer forced her treatment into warp speed. There's no way to predict the progress of a cancer when only 11 other people in the world have had it. Treatment was aggressive and in an unthinkable plot twist cancer had made itself at home elsewhere in her body.
It was soon July and time for my Bone Marrow Transplant BMT, by this time I had received about 2 years’ worth of chemotherapy in less than 5 months.
My oncologist had left just a couple days before, leaving for Scotland, 16,307kms away and of course, something had to come up; you can’t go into BMT with cancerous or even possible cancerous cells in your body.
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.
They performed yet another surgery and a bone-marrow biopsy the day after to remove the lymph node and test to see the re-occurrence of cancer in my bone marrow.
We started the transplant without the results, blind leading the blind. Normally the transplant would have been postponed a couple of days but with the risk of my death rising, it was full speed ahead.
We didn’t find out the results until we were a couple days deep in my BMT process. The lymph node was nothing, but the bone-marrow biopsy showed that cancer had built yet another place to live within me.
I had no idea.
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.
Childhood cancer treatment is both a marathon and a sprint. Treatment starts hard and fast and doesn't let up until the cancer is right where they want him for the next plan. Then the marathon begins. This entry is where Tamlin's sprint began.
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.
Our story so far has seen our heroine Tamlin admitted to ED after a fall, misdiagnosed with lymphoma and as her family wrap their heads around that news she received her correct diagnosis of Blastic Plasmacytoid Dendritic Cell Neoplasm, or BPDCN for short (because who has the time to say that mouthful in a hurry). Catch up on part 1 & 2 using the buttons below.
BPDCN is an extremely rare cancer, but most commonly found in older men over 60.
So, for me, a young 13-year-old girl, it was near impossible for me to get it, but I did, and the world kept turning.
The new diagnosis changed the doctor’s approach, I wasn’t facing a type of cancer I could live with and take care of with medication. I was facing a monster worse than the ones under your bed. By this point I was losing hope and fast.
That day they told me that I had BPDCN is easily the worst day of my life.
I had to start treatment straight away if I wanted even a chance to live.
Their goal was to get me to BMT (Bone-Marrow Transplant) and give me a whole new immune system. That was their goal and it was the only goal that mattered.
On the worst day of my life, I found out I could never have my own biological kids, that if I hesitated while in treatment I could quite possibly die, that I wouldn’t get to do year 8, that I wouldn’t and couldn’t go outside and see my friend or the sun.
On the worst day of my life, I realised that I would be dragging everyone who loved me, and I loved back through hell, and there would be nothing I could do about it. I couldn’t protect them.
After my 2nd diagnosis, the chemotherapy started straight away. It started out in heavy and big doses that didn’t ease.
The first dose of chemotherapy that I ever got went into my spinal fluid. I was in the hospital for a week after it with an excruciating headache and even worse back pain.
At last, I finally came home after what had felt like a million eternities and a half.
When I arrived home, I felt out of place, like I didn’t belong. Everything seemed alien, but maybe I was the alien.
I slept in my sisters’ bed in her bedroom surrounded by her things, but it was at least home. The fact she had a tv in her room also helped. Being home, surrounded by my family with my mother’s cooking felt like heaven, and if I had to die that’s how I would want to go- surrounded by my family so I could tell them that I loved them more than anything until I wheezed my last dying breath.
Obviously, that didn’t happen since I am writing this, but what happened instead felt just as bad dying, if possible, worse.
I was a terrible person to those around me. I knew it wasn’t their fault that my stomach felt like it had a thousand knives constantly stabbing it, that I couldn’t breathe, walk or that I had horrid hair.
It was the treatment that made me a terrible person with even worse hair. But in the end, it saved me, the treatment- not the horrid hair. Even when I was screaming and shouting for them to leave me alone, they never once left.
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.
Meet Tamlin, 14 years old.
I’m not absolutely sure what was going on in my brain that fateful afternoon, but I chose to use the outside steps. Now, these stairs had already tried to kill me once before when the railing gave out, so I don’t know what I had expected, certainly not for it to be my saving grace, that’s for sure.
It was as simple as that. I thought there was a step where there wasn’t.
I slammed into the old, wooden stair, my left shin taking the fall.
I remember looking down and seeing blood and white fragments. I started screaming.
You see I had this bruise-like lump on my leg that we called my ‘Alien’. I had landed on my Alien and it had burst quite rightly. I was always scared that that day would come, I should’ve been afraid of that day never coming.
I’m not a screamer but I screamed, and I screamed so much that the next-door neighbours came to see what had happened. My family didn’t react so quickly, they thought I had almost run into a spider or something. They came out slowly; my older sister first, followed my mother, questioning what on earth was wrong. They saw me standing there, tears streaming down my face, unable to explain what had happened, unable to move.
It was like I had been glued to the spot.
All I remember and all I choose to remember is that pain, that nothing ever could be as bad as that pain.
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.