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7-8-2008

Even after 15 years, I still remember vividly where I was, who I was with, what I was thinking, how and what I was feeling emotionally and physically. 

I’m talking about Thursday 7th August, 2008. Week 3 of the second semester of year 10. I played drums in a school band and we had practice after school. Mum had picked me up to take me to see my GP - she’d noticed some purple, spotty, bruise-like marks coming up on my skin over the weeks leading up to this. It was the middle of winter, so I was wearing long-sleeve shirts at school - no one had a clue. Clearly I didn’t either; I was dismissing them as eczema from scratching myself, or something that wasn’t anything to worry about. But Mum was worried, and I was a naive, soon-to-be 16-year-old boy who didn’t know any better. We didn’t know at the time, but we’d all come to know all about petechiae - tiny round, dark purple spots due to bleeding under the skin.

At the GP, Mum asked him if he thought that there was a chance that it could be Leukaemia - she had read something about the spots being a symptom of this. I didn’t pick up on this at the time, but his response, in hindsight, was one of not wanting to scare Mum or I. He simply said, “I think you should go to the hospital and get a blood test tonight”. So that’s what we did. Dad met us at the Adelaide Women’s and Children‘s Hospital, and I got the blood test.

We waited for what felt like an eternity, but really, it was probably about 2 hours. It hadn’t crossed my mind at this point that this could be something serious - I was more concerned about getting home in time to watch Australia in their opening game of the men’s football at the 2008 Beijing Olympics (the opening ceremony was the following night - I didn’t know at this point that I’d be watching that from a hospital bed).

Dad went searching for answers from the staff, to find out why it was taking so long to get the results. He came back eventually, and said, “They’re still waiting for the final results, but they think it might be Leukaemia”.

This moment, when those words left his lips and hit my ears, will stay with me forever. I felt an immediate change in everything in and around me. I looked back and forth at Mum and Dad in despair, wishing it wasn’t true. I started panicking, was shaking and trembling, and couldn’t sit still (this didn’t stop for a few hours). I started thinking, “I’m going to die. I’m not even going to make it to 21. I’ll never have a family of my own”.

A little bit later on, the hospital gave me a transfusion of platelets and red blood cells. When you read the results of a blood tests, it tells you what the normal range for each count is. For platelets, its 150-450 units per micro litre of blood. On this test, my count was 9. 9!!! Red blood cells were around 20, and basically all of my blood cell counts were well below the normal range. On the plus side, I got to watch the Olympics football while the transfusions were happening.

The Nursing staff did their best to make me feel comfortable that night, and told me that the doctors would meet with me in the morning to discuss doing some tests that morning. Dad also later told me that the Consultant and Head of Haematology/Oncology, thought that it could also be Aplastic Anaemia, and that he actually thought that it was more likely to be this. That helped a little bit, but it was a difficult night, one of uncertainty and flat out fear. 

In the morning, I met with Ram, the Consultant and Head of Haematology/Oncology at the Women’s and Children’s. He told me that he suspected it was Aplastic Anaemia and that they would do a bone marrow biopsy to confirm. It was a quick procedure and several hours of waiting in the room on the ward. In the afternoon, he told us that they had confirmed the diagnosis - Severe Aplastic Anaemia, not Leukaemia.

We had no idea what Aplastic Anaemia was, so in our minds, we assumed that it was good news. It felt like a relief, a weight off of my shoulders - no more trembling, no more fear. In the coming days, however, we would learn that not only was this not good news, but that it was very serious. We would learn that with this condition, my bone marrow had stopped producing enough of all of the different cells that make up our blood. We’d learn that immunosuppressive drug therapy was required, and if this did not work, a bone marrow transplant if a suitable donor match could be found. 

Needless to say, this came as a huge shock to everyone in my life - my family, friends, soccer teammates, school. I had been such a healthy and active teenager and had been right up until the diagnosis. In hindsight, I was incredibly lucky that I didn’t suffer any hard collisions or cuts leading up to the diagnosis playing soccer - platelets are what help your blood clot, so I potentially could have bled to death. 

Four weeks to the day from the diagnosis - Friday 5th September, 2008 - was when I began the immunosuppressive treatment. Up to that point, I’d been back and forth from hospital every 2-3 days, having transfusions to keep me going, having blood tests to monitor the results, and meeting with the doctors to discuss everything. I felt a bit like a pin cushion with how often I had needles being put in my arm!

The treatment went for 8 days in hospital, and included a range of different medications. In the weeks after this, due to my immune system essentially being given the chance to reset from ground zero, I was much more prone to infections and experienced a number of issues with this. All up, I ended up being in hospital for the majority of the next 5 or so weeks from the start of the treatment. During this time, there were no signs of improvement in my blood results. 

Mum, Dad and my sister were starting to get more worried, as were the doctors, although they did their best to hide this from me. I had some good days and some really bad days, but overall, I was quite optimistic. Or, at least, this was the impression that I portrayed - probably out of naivety, and not wanting to believe the very real possibility that I might not survive this. As the weeks went on, I was trying to show that it wasn’t affecting me, but I think that deep down, I was starting to worry more and more.

From the end of the immunosuppressive treatment in early-mid September, there was probably a 6-7 week period where I’d been staying in hospital for most of it, and if I wasn’t, I was going in for checkups and transfusions. This period had a significant impact on my family - mum and dad taking time off of work to take me in and out of hospital, my sister being in the middle of a hairdressing apprenticeship and trying to visit when she could, my extended family pulling together to support us around their own busy lives. I also had school friends coming in to visit, sending messages and gifts of support. Despite being extremely depressed and scared during this time, I felt incredibly loved.

Around late October, there was a blood test that showed that my levels had gone up slightly. This was a really promising sign and naturally, we were all really happy about this. Over the next couple of weeks, the results continued to climb, and with that, the mood started to lift, not just for me, but for everyone - my family, friends, the doctors and nurses who had looked after me and who I’d gotten to know so we’ll during that time. I can’t remember all of the nurses’ names, but I’ll never forget their faces. I do remember the doctors who oversaw my treatment - Dr Ram Suppiah, who was the head of Haematology/Oncology at WCH, and Manika Pal, a Registrar at the time who is now in the lead role. 

By April 2009, around 8 months after my diagnosis, I was considered to be in remission. My blood levels had all come back to normal (aside from platelets - they’ve stayed slightly below the normal r range ever since), I was able to return to school and playing sport as normal that year.

I guess this blog is a long-winded way of saying that, despite being several years ago now, this sort of experience never leaves you, and the impact that it has is everlasting. Treatment aside, it has absolutely changed my perspective on life. In some ways, for negative reasons - having a fear in the back of my mind that illness might take me young, that I might leave my family and any future family behind in the process, that things just in general won’t work out well for me. In other ways, for the better - to be more appreciative of the time that I do have, aware of the amount of love and support that I have in my life, and to be grateful to be one of the lucky ones to have experienced and survived a life-threatening illness. I don’t give myself credit for that, and I have had a mixed relationship with talking about it and reflecting on how it has affected me. It’s probably because I don’t want people to feel sorry for me, feeling unworthy or undeserving of sharing my experience because there are many other people who have been affected by someone losing their battle with illness. On the other hand, it’s a huge part of my life story so far, and if I’m not sharing it, I’m not being authentic. I’ve also realised (through several people in my life reassuring me) that I’m allowed to share my experience without being seen as attention-seeking. Doing it for a good cause like fundraising for Maddie’s Vision certainly helps!

For better or worse, this experience has significantly shaped who I am as a person today - and I’m okay with that.