She wanted reassurance that everything was healing as it should and desperately hoped that her isolation could finally begin to ease, even if only slightly.
She has spent so much of her childhood in hospital rooms, behind masks and closed doors, missing out on the ordinary experiences that most children take for granted.
More than anything, she simply wants the chance to be a little girl and enjoy her life.
The family arrived in London feeling hopeful. As always, the day began with blood tests. Because Florrie has recently been finding blood tests particularly difficult, she was also due to have a PICC line inserted while she was in theatre.
She then underwent lung function tests and a chest X-ray.
But then came the phone call from her doctor.
Despite the G-CSF injections, Florrie’s neutrophils had dropped again, leaving her neutropenic.
Nobody had expected it.
The unexpected setback has left both her family and medical team struggling to understand why her neutrophil levels keep falling.
And once again, her bronchoscopy had to be cancelled.
Florrie was “absolutely devastated” — and her family were too.
They had quietly begun making small plans for the summer. Nothing extravagant, just precious moments they could share together: days out, making memories and simply enjoying the incredible gift of life she has been given.
For the first time in a long while, they had started to believe they might finally be able to look ahead rather than constantly living from one hospital appointment to the next.
Now, that hope has been replaced by uncertainty once again.
They are back to waiting for next week’s blood tests, hoping they will finally show the numbers they have been praying for. Once again, plans have been put on hold because they simply do not know what the coming days will bring.
It is incredibly difficult not to feel heartbroken when every apparent step forward seems to be followed by another setback.
The family are trying desperately to remain hopeful, as they always have, but they admit this latest blow has really affected them.
For now, all they can do is wait and hope.
“Please keep Florrie in your thoughts. We just want answers, and more than anything, we want our brave little girl to finally get the news she’s waited so patiently to hear.”
