Here again.
It’s September 1st. What did you think of today? Today I thought of my sweet Goddaughter. My sweet Emmi Grace. I thought of the millions of children every year who are diagnosed with childhood cancer. I babysat sweet Emmi’s big sister Nina and rather than putting Emmi to bed and letting Nina give her baby sister a kiss on the cheek, sweet Nina said goodnight to her sister in a prayer while looking at the “Emmi moon”. It’s the most beautiful, terrible thing she does every night. She sees any full moon and says “EMMI MOON!” with all her energy. She talks to the moon like her sweet sister really is up there on the moon and she’ll come back to her any minute. Sometimes its quick and sometimes she babbles on telling Emmi anything that comes to her mind, sharing her life with her sister one prayer at a time, the way I grew up babbling to my sister as she tried to sleep in the twin bed across from mine. I only wish they had been given the opportunity to grow up together and know that love and friendship you can only experience with your sister. But they don’t get that. Nina gets to grow up with a sister she can only talk to in her prayers and her dreams. Our family has a hole in it. We miss our sweet baby. Cancer took all this away from us. It took Emmi’s life from her. It took her right to live away from her. Her parents were told they had to make the choice for their 4 month old baby: to treat or not to treat. So they treated. Then they treated some more. And some more. And then they were told the treatment had made Emmi too sick. She couldn’t continue treatment. There was nothing more to do. Their were no more options. How terrible. How heart breaking, sould crushing, mind boggling. What did they mean no more options? I was there on that day. The day she went from okay to too sick. She was in my arms sleeping. I put a bow on her head at the hospital, put my laptop on the hospital stool, rocked this sweet girl that was finally letting us hold her again and watched Suits while rocking her. I remember her parents coming back to the hospital that morning and we took a picture of me holding sweet Emmi. It’s the last picture I have of her. I’m laughing at something said off camera and Emmi is bundled up in a blanket with that big bow on her head, sleeping soundly for a few moments. I had to leave again for my other cousins shower. The doctors were coming in to talk to them, I stayed just to hear the updates. Emmi was going to the PICU, but it was going to be okay. It had to be okay. It wasn’t good, but she was okay. I just been holding her after all. I helped my cousins pack all their carefully stored belongings and we parted that day. That’s how it happened. So quickly. Our world went from upside down to sideways. I drove home, under strict instructions to tell no one. Not yet. She was going to be okay. That’s what we told ourselves that day. Then the call. That terrible call. Come back. Bring my mom. We don’t know, but it might be time. Just bring my mom. And back we drove. In the pouring rain we drove to Orlando. How appropriate that it was raining as we held in our tears because it couldn’t be true. Emmi couldn’t be out of time. Not yet. She was so tiny. So much life left she was supposed to live. So many memorie she was supposed to have. Her sister was supposed to have her as a maid of honor. They were supposed to grow up together and hold hands, and play games like little girls do. They were supposed to wear matching dresses every year for family pictures until someone got old enough to say they didn’t want to match anymore. But instead we lost her. In that terrible moment, more terrible choices were presented. The oscillator pumped her tiny body with oxygen so quickly she shook. She was unable to move. We kept vigil. We prayed. So many prayers were said, over and over. Prayers for a miracle. Prayers that she would make it. Prayers that she wouldn’t feel any of this. Prayers that she was not in pain. We prayed so hard for that little girl. She was confirmed. I promised to guide her in the instruction of the faith. I knew she would guide me instead. Forever watching over us and the lives we lived in her honor. I still cannot listen to the Beatitudes without crying, thinking of her tiny body in the big room and those terrible days that never ended. They still haven’t ended and the truth is they never will. We will always, ALWAYS fee her absence. In family photos, at Christmas, only 3 days after her birthday, at Easter, so close to diagnosis day, in September when we go grey and gold for our sweet Emmi. We feel it forever. Those days will never truly end. Emmi never should have had to endure adult chemo adapted to treat a pediatric cancer. Emmi should have had a treatment plan that involved treatments designed specifically for pediatric cancer, and more specifically for ATRT. That does not exist. Pediatric cancer isn’t pretty. It’s not bald heads and smiling kids. In reality, pediatric cancer is a million terrible choices. They are terrible because treatment options are slim for pediatrics. I’ll say it again. It’s not pretty, it’s terrible. And that’s why you need to go gold in September. Because no child should be fighting war with a slingshot when the enemy has a machine gun. And no parent should have to bury their child because their were no more options. Join us and fight. Join us and pray. Join us and go gold.