At just 10 years old, Imogen has become a bit of an expert on leukaemia. She knows all the treatments, the medicines, the side effects, and the hospital system itself. She not only knows about the acute lymphoblastic leukaemia she was diagnosed with, but through meeting kids on the ward and at camps, she’s come to know a lot about other cancers affecting children, including the incurable ones. From the sudden onset of symptoms to a hospital visit that became a cancer journey, Imogen had to grow up fast.
Imogen shares her story in her own words...
That night at the hospital, I really just couldn't think straight. Everything went so quick. It was all a blur. I was just like… leukaemia? Cancer? What does that all mean?
I was excited for the bed ride to push me all the way to the ward, but then I saw the sign, ‘cancer ward’ and I was kind of freaking out about that.
Mum said that being on the ward is just going to be like staying in a hotel, so I was excited. But then I went to sleep for a little bit and when I woke up, I felt this cold thing going into my arm and there was this weird buzzing noise.
I’ve had roughly about 20 surgeries and I'm still so terrified of surgery.
Around the start, they had to do quite a few to test my bone marrow and they had to do some stuff in my spine. Sometimes leukaemia can be hidden in the spine, and they don't realise it's there till later in treatment. So, they kept checking that for a while.
I have to say, the most painful surgery was the port surgery. I woke up and there was this metal thing under my skin that was stretching it and there were all these scars, and they were so painful, like a knife had gone into them – which it had.
I mostly get stuff like IVIG, plasma, blood transfusions if needed. I was getting different chemo through my port, but now I’m on tablets.
The longest surgery I had was the Hickman surgery. It took four hours longer than expected. I was just too nervous about the Hickman, and I was freaking out. I was like, ‘I don't want a silly thing in my chest.’
At that time, I was even scared to have that clip on my finger. I was scared of the blood pressure too. It was annoying having all this stuff on my body.
And I’ve had so many tubes going through my nose and down my throat. I’m now on my fifth one. One night, I threw up my tube and I was just like; ‘This is it! I'm not getting a new tube again, I'm taking tablets’. But then I started having problems with my weight and I was so underweight that I was off the charts, and they got me a tube to have feeds through.
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Sticking up for myself in a room full of adults
The trauma and anxiety Imogen felt in her new circumstances combined with the shock and stress felt by her parents as they waited a gruelling six weeks for a prognosis meant it was a rough ride in the early days. Imogen’s mum, Shannon, said her diagnosis was a steep learning curve and they’ve had to find a way of working with Imogen to get the results they need.
Shannon shares her story in her own words...
Imogen became a very fierce advocate for herself very quickly. And the medical team have learnt to really work with her, and we get better outcomes that way.
So, Imogen very much takes the lead with how her treatment needs to happen. For example, she'll turn up with an instruction list to the anaesthetists and they're very good at working with her around following her instructions.
She's pretty much become her own advocate and had to mature very quickly because she's always having these serious conversations with adults.
We found that the only way we've been able to achieve the task that we need to achieve is for Imogen to be involved in all the decision making.
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She may require more surgeries down the track too. A side-effect from the steroids in treatment is that she’s been diagnosed with ‘avascular necrosis’ (AVN). It means the blood supply in the bones stopped due to the steroids. ‘Necrosis’ stands for bone death, so most of her bones have died off through her body. She was wheelchair bound for nine months.
So, being surrounded by a lot of adults for the last two and a bit years and having those adult conversations, a lot’s changed. She's got this personality that just draws everyone in. The resilience shows through.
There's been days where she gets very dark and very down with all the things she's been through, there's a lot of trauma there.
But one thing I've noticed is that Imogen just likes to live life to the fullest. She's always wanting to be out there, just having a go and enjoying everything.
We can provide people experiencing distress due to a cancer diagnosis with free short-term Nurse Counselling sessions. Call 13 11 20 to speak to a team member.
Being around other kids and finding people to relate to
At my school they did a little puppet show. And all the kids really enjoyed it. And it was really entertaining. It helped them know a bit about what cancer’s like and understand it a bit.
But I still don’t think they really get it. I found friendships hard sometimes when I got AVN. They'd all just talk about sports, and I couldn't do sport. I really wanted to join the basketball team, but I just couldn't because I was so weak. It was really hard.
Sometimes my friends would climb to the top of the playground to chat, and I was just in my electric wheelchair sitting there at the bottom of the playground with no one to talk to.
I heard one of my friends say that someone called me a ‘spoiled brat’, I don’t know why.
But I’ve made lots of friends who have cancer too, like my friend Chloe. We can relate to a lot of stuff and she’s really nice. We kind of just clicked. I feel like I could really be myself around her.
When she relapsed, I messaged her almost every day, sent her videos and stuff.
One of my friends had a similar thing to me. He got little holes in his bones from steroids, and I had avascular necrosis from steroids. So, that was something that I could relate to.
Being bald makes me feel strong.
I’ve lost my hair twice because of the chemo. I was kind of sad to lose it the second time because it took a long time to grow all that. But this time it grew back much thicker. The first time it was all fluffy like baby hair.
Honestly, I don’t care what people think anymore. I didn’t mind not wearing a beanie when I was bald.
Being bald makes me feel strong because it just shows what I'm going through and that I'm fighting a battle and I'm winning. I've got a battle ahead of me, but I can do it. And I'm almost at the finish line
Mum keeps saying that I've matured beyond my years, and I felt like before treatment, I was just kinda like a little kid. You know, not having to worry about what cancer is and everything. Just having fun.
I think I'm a lot braver than who I was. I feel like I can really just be myself, from what I've been through. Just not worry about small things compared to having cancer and just make the most out of life.
Imogen is still on daily chemo for another six months. She looks forward to the day when she can finally stop taking tablets and have her port removed.
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