Believing in tomorrow, Part 2 of 8

By Tamlin Hall, 14 years old.

​Welcome Back to Tamlin's telling of the diagnosis of her very rare cancer and her hopefulness. 

This installment tells the story of many different teams from different disciplines attempting to diagnose, her misdiagnosis and the final words that she did indeed have  Blastic Plasmacytoid Dendritic Cell Neoplasm which does not have a treatment protocol.

​Her team were going by their gut instincts. 

Read Part 1

​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.

Part three