“Savana loved people and loved to laugh. Her face was covered in freckles. She played a game of plucking them from her skin and placing them on mine. In sixth grade Savana made Valentines for her class. On the back of the card for the girl who bullied her, Savana wrote, ‘I know we haven’t been the best of friends this year, and I know that you are going through a hard time. But I want you to know that you matter, and I love you. I hope we can be better friends in the future.’
Savana turned 13 and scenes started playing in her mind like a movie on top of what she was doing at school. I thought she was just daydreaming. Then came the call from the school that Savana had urinated on herself. I knew something was wrong. That was March 2018. I was a single mom with Savana and Seth, my 16-year-old son. I took her to the hospital and they gave her an MRI. We ended up at the emergency room at USA Children’s & Women’s Hospital. It was the beginning of a very long journey.
On August 30 the oncologist met with us. The doctor had written “high grade glioma” on a yellow notepad and underlined it twice. This wasn’t what we expected to hear. The ICU doctor said the tumor was aggressive, incurable and terminal.
We spent 14 of the next 24 months in hospitals in Mobile and Atlanta. I quit my job and became Savana’s sole caretaker. There was radiation to shrink the tumor, but the steroids reducing Savana’s seizures began destroying her bones, making walking difficult. A biopsy on her thalamus found a second type of brain cancer that controlled the functions of her body.
In the fall of 2019, Savana declined in ways the doctors didn’t understand. They called it “disease progression” as the seizures became unmanageable. In comes Rene and the Bridge Program program. They were the best thing that could have happened to us. Rene took over the role of being the connection between Savana and the teams of doctors. I realized it had been so much work trying to be Savana’s nurse that I wasn’t given the opportunity to be her mother.
Savana spent her fifteenth birthday in the hospital, and Rene and everyone in ICU threw the biggest birthday party for my little girl. We knew we were getting close to losing her and went home two days later. That was where Savana wanted to be.
Two weeks after we got home, I knew it was Savana’s time to go. I called Rene, and she came over and made my baby as comfortable as possible. She told me when Savana was gone. Rene assured me I had made the right choices and had done everything right. She loved us enough to be there when Savana closed her eyes for the last time.
Savana died on January 27, 2020. Her tombstone says ‘I love everyone,’ because she did.
I’ve learned it’s possible to live a good life even after you lose someone you love. It’s not the life that you dreamed of, but you can make new dreams. I thought the one thing I couldn’t live through was losing a child. But it’s your choice on the other side of it. Whether you’re going to live through it or whether you’re going to live dead because of it.
A painting I made hangs over Savana’s bed. It says, ‘I will love you with my whole heart forever.’ That’s what she always said to me. That’s what I said to her as she was taking her last breath.”
Savana and Evie are part of the story “A Bridge to Home, A Bridge to Heaven, A Bridge to Healthy” running in Lagniappe this week. Here is the link to the story: https://lagniappemobile.com/bridge-program-at-usa-childrens-womens-provides-support-to-parents-of-children-who-are-facing-difficult-medical-diagnoses/