When a Small Admin Mistake Isn’t Small at All

dellanienash9
Apr 25
4 min read

It started with a name.

A name we had never seen before popped up on Maya’s appointment: Professor Darren Hargrave. Alongside Karin Straathof—who we do know. Maya’s Car T Cell consultant.

But that new name? Professor Darren Hargrave.

It threw me. So of course, I Googled him.

And straight away—brain tumours, spine tumours, paediatric neuro-oncology. Basically everything you never want to read when your child already has cancer. And just like that, my brain went into overdrive.

“Why is he involved?”

“Have they found something in her brain?”

“Is this the next thing we’re dealing with?”

No one had said any of this. But when you live this life, you don’t wait to be told—you try to get ahead of it.

What should have been a simple admin detail turned into a full week of anxiety. That horrible sick feeling in your stomach that doesn’t go away. You’re still doing your normal week, working, still showing up as you do —- but inside, you’re bracing yourself for bad news.

The Build-Up

The video call appointment was booked for Friday, 24th April at 4pm.

All week I was thinking about it. Planning questions in my head for someone I thought was about to become part of Maya’s care:

Are we now dealing with brain or spine tumours?
What have the scans shown?
What does this mean going forward?

Meanwhile, life carries on as normal on the outside. But inside, you’re preparing for the worst.

The Call

4pm came.

Lola was doing origami with Maya, just being kids. I moved myself away—I didn’t want them overhearing anything in case it was bad news.

I logged on, and the screen filled up:

CAR T consultant
Senior research nurse
Junior research nurse
Clinical fellow
Maya’s original consultant from Royal Marsden Hospital
Her Royal Marsden CNS (clinical nurse specialist)

And then me.

Terry couldn’t even sit through it—he went into another room. That’s how tense it felt.

The Reveal

So first things first—

Professor Hargrave? Not involved.

Not joining Maya’s care.

That name on the appointment?

Just an admin mistake.

Oh!

Honestly… I didn’t know whether to laugh or cry at that point. A whole week of stress over something that shouldn’t have been there in the first place.

But then came the actual update.

The MRI of Maya’s brain and spine (27th March 2026- the Friday before we got discharged on Monday 30th March) showed that the lesion we already knew about has grown. It was 7mm, and now it’s 15mm. It’s sitting between T9 and T10, in that space between her spine and rib cage.

So they ordered an ultrasound of the spine (16th April), and she had the usual MIBG scan (17th April).

If you know, you know—that MIBG scan only lights up if it’s neuroblastoma.

And it did.

So it’s confirmed—the growth in that T9/T10 lesion is “active” neuroblastoma.

The Aftermath

So in the space of one call:

Relief—because that whole brain tumour spiral I’d been living in all week wasn’t real.

But also reality—because the cancer we do know about is still “active” and “growing”.

That’s the bit people don’t really get.

It’s never just one feeling. You don’t get clean, simple moments like “good news” or “bad news.”

It’s both! At the same time!

The Admin Bit That Actually Matters

That “small” admin error?

It’s not small. At all.

Because it sent me into a place I didn’t need to go. It made me spend a week thinking my child might have brain or spinal tumours on top of everything else.

And if it did that to me, it will do it to another parent.

So yes, I am thinking about raising it with Great Ormond Street Hospital PALS—not to complain, but so it doesn’t happen again.

Because in this world, details matter more than people realise.

The Reality

When your child has cancer, life isn’t just about treatments and results.

It’s everything in between.

Appointments.

Scan names.

Random names added to a call.

That’s where your head goes. That’s where the stress lives.

Final Thoughts

I handled it. I always do.

But that doesn’t mean it was okay.

This life teaches you to carry on no matter what—but it also shows you how much the “little things” aren’t LITTLE at all.

A Few Truths

When your child has cancer, your mind always goes to the worst-case scenario first. Waiting for news is sometimes harder than getting it. Relief and bad news can exist at the same time.

You learn to hold it together on the outside, even when you’re falling apart inside.

And sometimes, the hardest part isn’t the cancer—it’s everything that comes with it.

Maya is going to have more cancer treatment. It hurts. 😭

Chemotherapy is not an option.

Her bone marrow is still trying to recover from immunosuppresion from long-term high dosage of steroids and immune-modulators.

Maya’s still with us and we are grateful. Very grateful. But it hurts that after all that, severely disabled, that neuroblastoma doesn’t just go away.