Today, we spent 11 hours in the Emergency Room of the Children's Hospital of Philadelphia.
Before I go any deeper into the story, I want you all to know, we are home. Lily was in the ER. And Lily is okay. We have some follow up, but she is okay.
Lily had a brain tumor when she was 14 months old. She is now nearing 15 years old. She's been tumor free since her treatment in 2007. But, she has a ventriculoperitoneal (VP) shunt. In 2019, she had that shunt revised after it catastropically failed. Lily went to CHOP that time by ambulance and she was barely conscious. She woke up from shunt surgery, talking, joking and as herself, our Lily.
This morning, I noticed something off with her eyes. They were more downcast than usual--which can be a sign of hydrocephalus.
So we called CHOP and went to the ER.
These sorts of sudden, terrifying moments are pretty normal for childhood cancer families. It is a strange way to live, not only knowing the very logical idea that bad things happen; but also knowing the very nature of the bad things that could happen.
The price of survival in this cancer world is always this truth-based fear of what could happen. It is price I'll pay, with gratitude, everyday of my life, as long as I have my daughter Lily here.
Our emergency rushes to the ER not only scares us--but my two younger kids too. They are scared, filled with questions and most heartbreakingly, they also know how it goes: stay home with Grandmom, a friend will check on you, FaceTime us, the waiting will be long, the apologies from us and the constant "I love you's" via phone. Chloe and Nick are 11 and 8: they know childhood cancer, too.
We spent the day at CHOP--so many exams and neuro-checks, Lily's first COVID test (just protocol and negative) and then a CT Hydro scan to look at her ventricles. The scan showed no enlargement as compared to last time (which was in September 2019). We were given the word we'd be discharged.
Then, they changed their minds--Lily's symptoms were worrisome and neurosurgery wanted to see her. The CT scan last time was at a point when Lily's ventricles were so filled with fluid that they were practically bursting. The CT scan this time showed some enlargement, but maybe that was just normal for Lily's ventricles or maybe not. Lily would be admitted to the PICU for observation.
When Lily heard this news, she broke. How unfair is this to her? A 14 year old girl with her entire future in reach--the winter Crew season finally starting, plans with friends to see each other outside (socially distanced, etc) and the promise of babysitting to save money for her trip to France in 2022. All that good stuff at her fingertips and then the unfairness, the horror of childhood cancer leaps right in to stop her.
Neurosurgery needed more information, another exam--this time with a neurosurgeon and a shunt tap--when they draw out some cerebral spinal fluid from her shunt to make sure it flows. He came to see us in the ER while we waited for our PICU room.
All of his tests were fine. The shunt is working. Her neurological status is good. Even her eyes--although I can tell something is happening there--did not indicate any neurological issues. He signed her discharge papers and talked through things with us. So we will follow up, we will watch her, we will get another CT scan as a baseline and we will see a neuro- ophthalmologist to find out what's up with her eye muscles.
I was nervous, at first. But, Lily she was overjoyed. Lily has this way of living life not as if she is being hunted by the bad things that she knows full well have happened and could happen again; but instead Lily chooses to live in the long, beautiful in-between moments and let those simple joys envelope her.
So, I am not nervous anymore. I am taking my lead from my amazing daughter, who has been through more and seen more horrors than most adults. Lily knows childhood cancer. She knows what it does. She's seen how it robs children. But Lily does not live waiting for cancer nor does she live with cancer--she lives all around it, in the places of joy and victory and normalcy.
I think this is a choice we have to make everyday. We be anxious about what bad things might happen or we can simply live in the good moments--knowing that we are the only ones who can rob ourselves of joy.
So, today, I choose joy. I choose joy in the laughs we had with our rockstar nurse. I choose joy in the ridiculous Tik Toks Lily made her in her hospital bed. I choose joy in the love of our family and friends who instantly activate to counsel us, pray for us, send us videos, feed our kids at home and leave hoagies on our door knobs. I choose joy in a day not wasted in the ER; but a day I spent with my oldest daughter and my husband-the original three who can survive anything, together.
And I choose joy, because my once little girl, is now a big girl, who still thinks she is getting strength holding my hand, when really I am the one who needs a hand to hold.
Thank you for your love. And thank you for the joy you bring to our family every single day.