Amelia was diagnosed with juvenile myelomonocytic leukaemia (JMML) at nine months old. Here, she shares her story.
After my parents decided to opt me out of a bone marrow transplant (the only known treatment at the time, with still a low success rate.) I went into spontaneous remission and experienced little to no symptoms of having the disease and, although closely monitored, stayed that way until 2018 when I was finally discharged.
In 2019, whilst studying for A-levels, I began to experience (what I thought were) flu-like symptoms (headaches, body aches, shortness of breath, fatigue, loss of appetite, weight loss, dizziness, bruising, night sweats), it wasn't until a month or so later that I became acutely unwell and experienced extreme abdominal pain in the early hours of the morning.
I went to A&E, where I later got told I had leukaemia again, and although we had to wait to see what kind, it was likely going to be acute myeloid leukaemia (AML) due to my history. It was only when I got a bone marrow test at the Queen Elizabeth Hospital Birmingham (QEHB) that we discovered it was acute lymphoblastic leukaemia (ALL).
From there, I underwent extensive chemo treatments and tests and experienced many side effects such as; profound amounts of nausea, a tremor, nerve damage, 'chemo brain', and lung damage due to infections.
I finally finished treatment in 2021 in the middle of Covid, and after (finally) completing my A-levels we discovered I had a rare mutation in my Casitas B-lineage Lymphoma (CBL) gene which puts me at higher risk of developing blood cancers.
In March 2022, after six months of being off treatment and settling into university life in Chichester, I began to experience extreme bone pains which immediately made me contact my haematology team back in Birmingham who began to order different tests to try and figure out what was going on.
Less than a week later, I ended up in A&E again and was told that they suspected I had relapsed with ALL.
Being three hours away from home, four hours away from my team, and it being the middle of assignment season at the time, made this already stressful time even harder, but we sorted transport to get me back up to QEHB where we began to plan our next steps.
Once the relapse was confirmed, I intermitted my place at university and began another six weeks of in-patient induction regime in the Teenage Cancer Trust unit at the hospital, followed by two rounds of immunotherapy, and more intense chemo treatments for the next few months until I reached maintenance which I am currently still undergoing.
Throughout all of this, I have been very reliant on talking to friends about my struggles (both physical and mental). Not only did I rely on my friends that I had known for years, but I also found it very helpful to talk to others in the cancer community.
I think, especially in these times, social media gets a lot of bad rep, but without it, I wouldn't have met some of my closet friends who have also gone through very similar experiences, which meant that we could all relate to one another - It was almost like we compared notes on how we were doing. Although this little tight-knit community is great, it also comes with the fact that cancer is very real and has caused people to pass away.
When this happens it hits us all differently, and for me, it came with an insane amount of survivor's guilt and anxiety. But again, these are the moments I'm glad I've got these people around me and have a space to vent, cry, or just talk nonsense to take our minds off everything.
Losing someone you're close to will never get easier but having people who know how you feel makes you feel just that little bit less alone.
I'm now back at university, finished first year with a 2:1 and am due to finish treatment in March 2024!
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