Growing Out of Neutropenia 🎉

I still can’t quite believe it. After three years of keeping one eye on every fever, sore ear, and blood test result, I got the news: Kaydes no longer has Severe Chronic Neutropenia. Her latest blood test came back at 2.3 – healthy, normal, and honestly… astonishing!

I made the call to the GP clinic while I was with my mum, who was ready to shout the news across the city. I insisted she wait until the email confirmed it, just in case the nurse had read the wrong row or something! When the email came through, there it was in black and white. I’m still in disbelief. I’ve even convinced myself it’s because of all our recent sun and travels. A bit of vitamin D magic, maybe?

A Journey That Started Young

If you’ve been following Kaydes’ story, you’ll know this all began back in 2022, when bronchiolitis, mastoiditis, and repeated ear infections revealed something we’d never even heard of: neutropenia. At first, the doctors suggested she might grow out of it around two years old.

Later in 2023, her haematologist, Dr Saxon in Adelaide, explained that most kids with this condition tend to grow out of it by school age. I definitely preferred the original timeline, so I was a bit crushed when her blood test at two didn’t show any improvement. It felt like we were settling in for a longer wait.

The plan was simple: blood tests every 3–6 months and monitoring. That continued with her new specialist when we moved back to Wellington in early 2024. Still, it was hard not to hold my breath every single time those lab results rolled in.

The Long Wait

Over the past few years, neutropenia has been this quiet, background part of life. It shaped our decisions. When she could attend daycare, how we managed the endless ear infections, even where we travelled to. And yet, most of the time, Kaydes looked perfectly healthy: strong, happy, and thriving. You’d never guess her immune system has struggled.

Being mindful of it for so long taught me a lot about patience and advocacy. Every blood test was its own mini battle. Her first proper inner-elbow draw came with a few tears, but she followed instructions beautifully and proudly clutched her little certificate afterwards.

Seeing the Numbers

When I heard her latest result, I didn’t cry, or even jump for joy. I was in a state of disbelief. I asked the nurse to email it over because I needed to see it with my own eyes. And there it was: 2.3. Normal. After years of low numbers, hospital trips, and a postponed surgery, the numbers finally said what my heart had been hoping for.

I’ve spent the past couple of days feeling a mix of relief, joy, and that strange cautious disbelief you get when you’ve been on high alert for years. And yet, it feels amazing to just… breathe. To relax a little for the first time in a long time.

What This Means for Us

For Kaydes, it means more freedom. She can attend school full time next year without me being quite so fearful. Any future procedures (like grommets) are less complicated, and we can finally live without that constant shadow of worry. For me, it’s a quiet triumph of patience, advocacy, and resilience.

I know other parents will read this, possibly with tiny anxious eyes fixed on late-night lab results. If that’s you, I want to say: it’s okay to worry. It’s okay to ask questions, even when you think they sound silly. It’s okay to push for clarity and to feel your heart drop when numbers dip.

We’ve learned so much from this journey. The importance of staying calm, being curious, celebrating the small wins, and simply enjoying the child in front of you. Neutropenia may have been a big chapter in our story, but it doesn’t define Kaydes, and it won’t define her childhood.

I hope sharing our journey gives reassurance to families navigating neutropenia. And to Kaydes — you’ve been brave through so much. I’m endlessly proud of you. Here’s to more sun, laughter, and normal blood counts!