My 50th Today, Grateful Everyday

dellanienash9
Nov 27
2 min read

Facebook memories hit me hard this morning. Baby-Maya, tiny and sweet, completely unaware that neuroblastoma was already in her little body. Then I think of the photo from four weeks ago, right before her CAR-T infusion. Taller. Braver. Stronger than any kid should ever have to be.

And then today’s photo. My 12-year-old girl with a nasal cannula, an NG tube, already twice admitted to ICU, seconds before physio had to suction her again as ICANS keeps fighting its ugly fight.

Those pre-cancer photos hold a childhood she lost. A life she should have had. I grieve for her. For us. For what cancer stole.

But today, on my 50th birthday, my heart is filled with gratitude too. Real, grounded gratitude. Because we still get time with her, and that is the greatest gift.

Almost nine years ago, when this nightmare all began.

Ever since, my perspective and my language still err on gratitude. When we are exhausted and drowning in hospital appointments and medical interventions, I stopped saying “we have to.” I tend to say “we get to.”

We get to care for her.

We get another day with her.

Because truth be told, not every parent gets that.

Nine years of fighting. Nine years of growing. That stormy little 3-year-old is now a taller, prettier, still-wild 12-year-old who has lived through more than most adults.

So on the nights when I get deafened by the noisy IV machines in the ward, when my legs feel like lead, I remind myself:

We get to sit beside her.

We get to love her through this.

Immune effector Cell–Associated Neurotoxicity Syndrome (ICANS)

ICANS is unpredictable and frightening, but time is still ours. Right now, Maya is still ours. And I am thankful for every minute, every breath, every day we get.

And I’m thankful for all of you who keep loving our daughter Maya. If love alone could cure her, she’d be healthy already.

We’re still balancing on the edge of the unknown. We don’t know if the ICANS will now start to ease or continues to flare in waves.

But we keep holding on.

And today on my 50th birthday, I’m holding on with gratitude.