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Please Tell Me This Isn’t The Beginning Of The End
How long is a piece of string? 🤷🏼♀️🧵 Apparently, that’s the consultant-approved answer when it comes to Maya’s recovery… But sorry, I’m not accepting that energy 🙅🏼♀️ Maya WILL walk again. I don’t know how. I don’t know when. But I know she will 💪✨ And last week? It felt like a tiny slice of “normal”life again… and honestly, it felt really good to be back 🥹 I got to do the job I actually love doing again 💻❤️ Saturday morning, I went on a proper morning walk with Ter
Apr 9


Relentless Disease. Relentless Child.
🩷 An Update on Maya 💜 Over the past few weeks, I’ve shared snippets here and there. But I wanted to sit down and give you a proper update on Maya — because when you’re living it day by day, it’s hard to see the full picture. The Timeline 26th January – EMG (Electromyography) Needles into muscles. Wires measuring what Maya’s body can no longer do. 27th January – MRI head and whole spine under GA Watching Maya on her bed wheeled away, again, for another general anaesthetic —
Feb 25


Stem Cell Transplant: To Be Or Not To Be
Facing Another Hurdle: MiBG Scan Ahead (under GA- General Anaesthetic) This Wednesday, 11th February, Maya will have her MIBG scan under general anaesthetic. The day before, Tuesday 10th February, she’ll have the contrast injection. Most of Maya’s medications are now given orally—Prednisolone tablet 4mg BD, Aciclovir, Amiloride 5mg, Melatonin (liquid)—and the nastier-tasting ones, Itraconazole and Potassium, go through her NG tube. Aside from her monthly IV Pentamidine, she
Feb 9


When Your Child’s Life Hangs by a Thread
Gratitude: New Year’s Eve Reflections Lately, I’ve been thinking a lot about why gratitude has become something I hold onto so tightly. When Maya was diagnosed back in April 2017, she was just three years and nine months old. Stage IV neuroblastoma. The doctors told me she only had days — maybe 10 to 14 at most. I never told anyone that. I just kept saying, over and over: “Maya will be okay.” Eighteen months of brutal, relentless treatment followed. And then, in September 201
Jan 2
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