When Neurologist Said Today “I honestly don’t know”

#WorldCancerDay

Today, Consultant Neurologist came to assess Maya.

He was pleased with her recovery — slow, but real. Her upper limb movements are improving, and her cognition is completely intact. She’s still her.

The EMG showed her spine is fine, but there are inflammatory changes that may have affected her lower limbs. Sensation and proprioception are there. She can feel. She knows where her legs are.

Motor movement?

Zero.

We asked the question every parent dreads asking.

His honest answer was that he doesn’t know. He doesn’t know if Maya will walk again. And he doesn’t know if she won’t. He didn’t want to give us false hope — but he also didn’t want to take hope away from us.

So we sit in the space in between.

The plan is to continue with physio, OT, stimulation — passive and active movements. The brain can be taught. Muscles can relearn. And we can only hope the nerve-muscle inflammation recovers with time.

Only time will tell.

This evening, when Terry went home, Maya and I sat together in Cubicle 9. Maya started crying. She said she already missed Daddy.

But she kept sobbing, and I knew — instinctively — that something else was weighing on her little heart.

Through tears, she asked me:

Maya: “When are my legs going to move so I can go home?”

In that moment, my heart shattered into a thousand pieces. 💔💔💔

If we hadn’t signed up for CAR-T cell therapy, Maya wouldn’t be facing this.

But if we hadn’t gone for CAR-T, our only option would have been palliative chemotherapy.

Damned if we do.

Damned if we don’t.

I swallowed my pain whole and refused to break in front of her. I smiled. I cheered her on. I told her — with every ounce of strength I had left — that we will get those beautiful long legs moving again!

“Maya,” I said, “you are the strongest, most beautiful girl. Your legs will move again. We just have to keep working hard to remind your muscles how.”

She looked at me, then asked:

Maya: “On the 15th of February… where are you going?”

And she started crying again.

I told her I’d be right here, looking after her.

“But what about your hair?” she asked. “I want to go with you.”

Nothing gets past Maya. Nothing.

Yes — I have a hair appointment on the 15th because my fringe has grown so long I can barely see.

“Okay,” I told her. “You can come with me.”

She nodded, satisfied.

Then she asked, “On the 23rd of February… where are you going?”

I’d mentioned to Terry today that I have an orthopaedic appointment. My MRI of right shoulder showed my rotator cuff is fine, but years of pain have turned out to be calcific tendinitis.

“I’m going to see a consultant about my shoulder,” I said.

Maya burst into tears again.

Maya: “I want to come with you. On the train.”

I told her Daddy would be here, and I’d come straight back.

“I want to go home,” she cried.

“Why are my legs not moving?”

She was inconsolable.

I held her. I tried to distract her. I suggested she ring people she misses. She called our wonderful friend, Lady Dawn.

Later, Maya had a bed bath. I brushed her teeth — she’s trying to do it herself, but we’re not there yet. We worked on passive movements with her skinny little legs. I asked her to push.

“Push, push, push,” I said.

Maya: “I am pushing, Mum. But my legs won’t do it.”

💔💔💔💔💔

Now Maya is fast asleep. And only now — only when she is peaceful — I let myself fall apart. I cried until there were no tears left.

So listen carefully, cancer.

You will not be forgiven for this.

There is no meaning here. No lesson. No reason.

You will not have the last word.

Maya’s story will keep breathing. Her name will be spoken. Her life will matter — whatever the outcome.