Everything Changes in a Heartbeat 😩

Everything Changes in a Heartbeat! 😩

Monday, 6th October, 9:34am — my husband Terry received a call that made my heart sink and my head spin. Maya was expected at Safari Day, Great Ormond Street Hospital (GOSH), the very next morning — Tuesday, 7th October, at 7:30am — for a bone marrow biopsy and trephine under general anaesthetic. Less than 24 hours’ notice for what they called a “planned procedure.”

Had I known this was coming? Absolutely not.

I immediately rang the Research Team at GOSH to clarify, because nothing about this felt right. I asked:

1. What’s going on?

2. Can it not be done at the Royal Marsden Hospital in Sutton — which is so much easier for us to get to?

The answer was brief but final:

1. It had to be done before Maya’s CAR T-cell therapy (which I already knew was scheduled for 28th October).

2. It had to be done at GOSH because the CAR T-cell trial is being conducted by the GOSH team, not Marsden.

So I called Terry back and said, with a heavy sigh, that he and Maya would need to leave home at 5:30am to catch the 6:13am fast train to St Pancras, then grab a black cab or Uber to GOSH.

This is why Terry is Maya’s full-time carer — because when calls like this come through, everything else stops. He has to drop everything without warning.

As for me, I had a full clinic day ahead — more than 30 patients booked for lots of 10-minute injection slots on Tuesday. Rearranging all of that isn’t easy, but what choice do we have when it comes to Maya?

Just as I was booking their train tickets, my phone rang again. It was GOSH.

This time, they thanked me for questioning the timing and told me Maya shouldn’t come tomorrow after all — because the bone marrow biopsy must be done no more than two weeks of her CAR T-cell therapy. Doing it on the 7th would have been way too early. They apologised for the confusion.

And just like that, plans shifted again. Relief washed over me 😮‍💨 followed by that all-too-familiar ache of exhaustion and disbelief. 😯

This is our reality.

The carpet beneath us can be swept away in an instant. Just like that.

Families untouched by childhood cancer will never truly grasp how unpredictable and chaotic this life is. You learn NOT to hold on too tightly to plans, because everything can — and often does — change without warning.

I’m grateful that I have a medical background and the confidence to question things.

But I often wonder — what happens to parents who don’t? Those who simply follow instructions because they trust the system, unaware of how easily things can get mixed up? How much stress, financial loss, and wasted effort do they endure?

For now, we breathe a sigh of relief that the biopsy is postponed. The new date is set for 28th October — the same day Maya begins her three-week admission for CAR T-cell therapy.

For now, a reprieve. These days, even one calm moment feels like a win!