04/13/2024
April 13
Are there any days that hold so much emotion for you on their anniversary that the feelings just pour out? You can feel it from the depths of your heart to the tips of your fingers. You are completely utterly consumed by the flood of memories and emotions? For me, I have some great examples of those days. The days each of my children were born for example.
But then there are other days. Days of unimaginable loss. Days of pain. Days of sadness. Days of grief.
For our family April 12 and 13th are big days. You see, in 2016, as April began, our second daughter, Emmi Grace, was not well. On April 12, we learned that what we believed was colic was something far more serious. We learned that her inability to keep down food was not in aversion to the milk she was drinking. We learned that she had severe swelling in her brain and was going to require an immediate surgery the following day.
On April 13 of 2016 she underwent an MRI to confirm there was no structural reason to avoid surgery and relieving her hydrocephalus. The world changed after that MRI. A truly remarkable pediatric brain surgeon entered the room. She was quite clear as she explained to us that Emmi Grace did not merely have hydrocephalus. Emmi Grace did not have colic. Emmi Grace was not allergic to her food. Emmi Grace had a brain tumor. She was 3 1/2 months old.
At the time, they were of course unclear as to what it was. She wrote down three types of childhood brain cancers: Ependymoma, medulloblastoma , ATRT. I asked if there was a chance they were wrong. What should I pray for? Was there a chance? She said, “Pray it’s not ATRT.”
Emmi Grace went to immediate surgery to have that tumor removed. Nothing short of the grace of God and the skills of the amazing surgeons and team at St Joseph’s Children’s Hospital, she survived that surgery. We were going to get one more day. Pathology came back. Ultimately, we learned that she did in fact have ATRT. Atypical taratoid rhabdoid tumor. We began to learn everything we possibly could about such a diagnosis. We had never even heard of it before. As it turns out it was a particularly aggressive cancer that often occurred on the brainstems of babies under the age of three. Due to its location and the age of children being diagnosed with it, it was and still is incredibly hard to cure or even treat.
We were told that she had about a 1% chance of survival. A family of faith, we stepped into action and identified the best resources for her. We believed that she would be that one percent. Someone has to be, right?
I believed that that was the worst day of my life. I had no idea that eight years later, I would be wishing to go back desperately to that day. Or any of the terrible days that followed. I would do anything to hold her one more time. Kiss her cheeks. Hear her laugh. See her play with Nina. Let her meet Joe. Absolutely absolutely anything in the world.
So today, on this absolutely terrible anniversary, we mourn. And we ask that you take a moment to say a prayer for the other children currently fighting for their lives. For the mothers, fathers, sisters, brothers. For those who’ve had to bury their children. For those fighting like hell to avoid having to do so. And if you happen to know one of these, just give them a damn hug. They might need it. If you are so inclined, there are amazing organizations working hard to come back the horribly toxic effects of chemotherapy in children. Working tirelessly to eradicate these unnecessary deaths. If you would like a list of resources to where you can contribute, I am happy to share… Hope4ATRT, Cure Kids’ Cancer Now, Cannonball Kids Cancer, Beat Childhood Cancer, Finn’s Fighters, 1Voice. The list goes on and on.
But today, please hold Emmi Grace, and all of the children gone too soon warmly in your heart
