Heidi was diagnosed with acute lymphoblastic leukaemia (ALL) just two weeks before her 6th birthday in August 2022. Her mum, Lucy, shares her story.
Heidi had seemed well, enjoying the summer holidays like normal. However, I noticed a few purple spots, like little pen marks, on her back. Concerned, I took her straight to A&E, as in my experience, purple means blood. We were sent home by a junior doctor without having bloods taken and advised to see the GP for blood tests.
Initially, we were told it was likely viral, but they wanted to check her kidneys. I tried to get her seen by the GP for the next two days, but they couldn’t fit her in. Two days later, the spots on her back had disappeared, but they had appeared extensively on her neck, so I took her back to A&E. Thankfully, the consultant there seemed to understand what was happening and immediately cannulated her. We didn’t return home that day.
Just 24 hours later, Heidi began the first round of intensive chemotherapy, which would last around two years. We’ve been told the first six to nine months are the most challenging. The first six weeks were particularly horrendous; the side effects were awful, and you could see your child changing before your eyes, both physically and psychologically.
We are always prepared for all eventualities now, having had numerous unscheduled hospital trips due to temperatures and infections. Heidi has been classified as ‘high risk’ based on her genetics tests done on day 15. This means she requires extra chemotherapy with different side effects and has a higher risk of relapse overall. Heidi’s bravery has been exemplary. She never fails to amaze us with her resilience, and not only that, but she also shows a genuine eagerness to learn and understand what is happening. She takes control, which I think helps her to cope.
She misses her school friends, but I’m hopeful she’ll be able to return at some point soon. As a family, it's been hard. We have held it together for this length of time, but admittedly, some things can be triggering, such as Christmas, knowing we need to spend that time in the hospital. The care at the hospital is incredible; the staff are angels, and we couldn’t ask to be in better hands. I have every faith that Heidi will make a full recovery; there’s no plan B. But I don’t like to think about the possible lasting impact it may have on us all, especially Heidi.
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