Written by Mandy Moxley.
My daughter, Deja, was born with severe combined immunodeficiency (SCID). Her childhood was never “normal,” but it was unique and she spent it with her family. She was a sassy daddy’s girl and she made sure everyone was aware of this.
Deja had a life full of biopsies, multiple ultrasounds, X-rays and blood draws. Her last trip to the ER was for stomach pain. It was so severe at moments, she could hardly catch her breath. A scan showed there was an infection in the lining of her intestines along with pancreatitis, which can be painful. One morning she woke up and I noticed her belly was bigger. I noticed everything on her little body – being a mother of a SCID child means you notice everything.
Her belly continued to grow, even though her ultrasound didn’t show anything different. A CT showed compartment syndrome. She was rushed to emergency surgery, and in that moment, our life was thrown a loop. We knew this was serious. Things had taken a turn for the worse. Deja was kept in PICU after the surgery, with her stomach left open because it was too swollen to close. Every few days they would clean her stomach. There was an area on her intestines that showed up in previous scans as “inflammation.” They biopsied this area again after the surgery.
We sat down at a small table outside of PICU – me, Deja’s father, and two of Deja’s doctors.
As the words “B-cell lymphoma” and “cancer” rolled off their tongues, our hearts stopped.
Deja was my soldier. She was the definition of the term “beating the odds.” I just knew she could get through this too. Even though we were told throughout that this was a possibility, it’s different when it’s confirmed and you hear “your daughter has cancer.”
Deja’s father didn’t say much. At this point, I really think it didn’t quite sink in. I immediately texted our family and our close friends. They planned to start chemo. We were told it would be a rollercoaster ride from then on out. That was an understatement. Deja went up and she would come back down. There were several times they thought that “this was it,” but she kept on going.
Our last time in the PICU, Deja’s belly again grew bigger, making it very hard for her to breathe, so they had to intubate her again.
I cried and cried in front of her.
She looked at her dad and I and said, “It’s OK, I’m not going anywhere.”
Deja was always the strong one in these situations and took on everything with full force. I remember playing her favorite “Frozen” songs next to her and just crying because I couldn’t wait to hear her sing them another 200 times. As the days passed, I could see the doctors’ faces were less and less hopeful. I could hear it in their voices. She used to squeeze our hands, even while she was on so many medications to keep her asleep. She would nod her head for us and she would still manage to give attitude. That’s what she was made of.
One day she stopped doing all that.
I knew she was tired.
Her eyes didn’t look the same, her skin was different and she didn’t respond as much as before.
On April 19th, around 12 a.m., we were told to call everyone in the family, as they didn’t think she was going to make it for another nine hours. A few nights prior we were told almost the same thing, so I was sure she would just push through this time too. We all crowded around her for hours, talking to her, crying and just pleading with God not to take her. I almost felt as if I was in another world watching this happen, as if it were a movie.
My little girl was dying. I’ll never forget her smell and how her body felt. Then, they declared her time of death. I hovered over my baby and said I was sorry and I love her so much. We washed her and dressed her and everyone saw her for one of the last times. Watching her father place his lifeless baby girl on the stretcher was one of the hardest parts I’ll remember. He was broken, and so was I.
Today, we relive every moment of that day in our heads, over and over. Today we take nothing for granted. We live by loving each other to the fullest. We don’t sweat the small things because they are just that, small things. We keep Deja’s memory alive with her bright smile and sassy attitude. She has shown us and so many others to never give up and push through even the most complicated situations. She is the definition of a warrior.
We hug our other children tighter every night and we never leave without an “I love you.”
Life is too short.
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