When Mum Gets Sick Too
- dellanienash9
- Jan 1
- 2 min read
Caregiving Doesn’t Come With Sick Leave
Tuesday 30th December 2025
On top of everything else, my own body waved yet another white flag.
A UTI that’s been coming and going for three weeks finally forced an e-consult and a walk to the local pharmacy. Three days of Nitrofurantoin, morning and evening, prescribed and collected. A small thing on paper — but only possible because a kind HCA stayed with Maya in the cubicles while I walked the nearly mile from GOSH. One of those much-valued acts of kindness that stays with you.
Moments like this stop me in my tracks.
I think about how different this would look if I were doing it alone. The logistics, the constant decisions, the physical exhaustion layered onto the emotional weight. I don’t know how single parents do this (there are several single Mums here at Lion Ward) — and yet so many are forced to. It humbles me daily.
It was a busy Tuesday for Maya too.
Eighteen minutes. That’s how long she stood on the tilt table — upright at 82°, strapped in, pushing against gravity and everything her body has been through. Eighteen minutes might not sound like much, but in Maya’s world, it’s huge. Another hard-earned win in a day full of them.
When Maya got back to bed, Lola video call us showing her ukulele, gently playing Maya’s favourite songs. Music drifted through — sister to sister — love and comfort wrapped into something no machine or medication could ever replace.
In between it all, the research nurse agreed to keep an eye on Maya for an hour, giving me a rare window to step away. I slipped out to Nuffield Health for a quick swim and steam. Just enough time to breathe, to float, and to remember that my body exists too — even here.
And then reality reminded us who’s in charge.
Platelets transfusion once again — every three to four days now (instead of 2-3 days) — and red blood cells transfusion too, with Maya’s haemoglobin dipping once more. These transfusions have become part of our routine, but the weight of them never really fades. We are very grateful to all the blood donors, plasma donors and platelets donors. Indeed, they truly are the superheroes!
What we’re fighting right now isn’t just childhood cancer.
At this moment, the focus is helping Maya recover from the harsh after-effects of CAR-T cell therapy —ICANS and HLH, rebuilding her strength, her blood counts, her ability to simply stand, sing, and be.
ICANS (Immune Effector Cell-associated Neurotoxicity Syndrome)
HLH (Haemophagocytic Lymphohistiocytosis)
I am endlessly grateful — for my husband Terry, for our family and friends, and for the nurses, doctors and HCAs who step in without hesitation. Support doesn’t remove the weight, but it helps you carry it. And love doesn’t make this easier — it makes it possible.
If you’ve followed Maya’s journey, thank you. If you’re new here, welcome. Please help us share her story — not just of cancer, but of grit, resilience, and the quiet bravery of a child who keeps standing up, even when everything is stacked against her.
Because the more people who carry Maya’s story, the lighter it feels for all of us. 🤍
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