The Day My Daughter Was Diagnosed With A Brain Tumor
August 2018 our first day of the “school” year (we homeschool) happened and shortly thereafter our whole world changed. . The only thing out of the ordinary about her that day was that she was especially clumsy, but she is my most clumsy child so it wasn’t remarkable. She also confided in me that she had peed in her pants on the way to the toilet a couple of mornings in a row. I dismissed that as well, thinking she had overslept or had a lot to drink the days before. It is so strange to me now that I managed to quiet the alarm bells for even a second.
That Wednesday, she caught her little brother’s cold. I went in to the bathroom to see why it was taking her so long to dress for her hip hop class and noticed that her left hand was closed. I asked if she was holding something and she said she wasn’t. I asked why she was keeping her hand that way, and she said she didn’t know. Then, I watched her try and pull up her dance shorts using her right hand normally, while keeping her left in a fist. It startled me. She argued that it was fine. That night, her dad and I had her show us that she could open her hand and move all of her fingers normally. The cold had given her a fever, so we assumed it was something to do with that.
Thursday night, she couldn’t close the toothpaste normally. She wedged the cap in her left hand and screwed it onto the tube with her right.
I took her to the doctor Friday. The nurse practitioner who saw her noticed a rash on her hand and decided eczema was causing swelling that lead to her holding her hand strangely. She prescribed a cream, had her leave a urine sample because of the accidents she’d had had, and sent us on our way. Relieved, I took the kids shopping. At the second store, I noticed that my daughter suddenly had a slight limp. She claimed it was nothing, that she was tired. I asked her to stop limping if she could control it. She stopped. At the next store, it was back, and I could hear the panic in my own voice when I asked her to tell me if she was doing it on purpose. “I need to know if there’s something wrong in your brain,” I implored her and then felt awful for sounding so alarmist. She stopped limping again.
Saturday morning, I was supposed to take her to a t-shirt decorating get together with three of her friends. I started to put the cream on her hand and realized that her arm was drifting down. I asked her to hold it still, and she claimed that she was, but it kept falling. I called my neurologist brother, who told me to have her hold her arms out like she was balancing a tray on them. I did, and her left arm drifted in and down. I sent him a video, and he told me to take her to an ER. When he said, “She needs an MRI of her brain,” my chest seized up and I sobbed and said that I would.
We told the other kids that we were going to the hospital to check out her arm issues, and I called my mom who said she’d meet us there. On our way, we stopped at a drugstore to grab a snack in case the wait was long. She went in with her dad, and I sat in the car trying not to think. In the waiting room, she sat at the end of a row of chairs, and her dad sat beside her. I asked if she wanted to move to the middle seat so that we could sit on either side of her, and she said no. I think she was upset with me for making her go.
The doctor asked a million questions and eventually told us that she would order an MRI of our daughter’s brain and spine. She assured her that she would be sedated for the scan. A nurse started an IV and we waited. My daughter was anxious to finish up and head to her friend’s house. Just before the MRI, a tech popped in to say that they weren’t going to sedate her after all. It was a shitty thing to do to a kid who suffers from anxiety. I went with her for the MRI, and she was able to remain calm for the first hour. She asked to pee, and when she came out of the bathroom, she was in tears and ready to leave. My poor baby sobbed for the second hour of the the MRI. All I could do was rub her leg and hope that things were going to be ok. I had no idea that the tech had spotted the tumor in her brain as soon as the test started. That he had informed the doctor, who went ahead and shared that info with my husband and mother. As soon as she and I walked back into her ER room, they told me. Then, the ER doctor came and got my husband and I and took us to a little room with a monitor. She showed me my child’s brain and the tumor growing in the middle of it. She held my hand and told me that she was sorry.
That was the end of my happy life.
If you are ever in a room with a doctor who tells you that there is a likely inoperable tumor in your child’s brain, and you do not already live near a world-renowned hospital that specializes in pediatric brain tumors, have that doctor contact St. Jude immediately. Do not entrust your child to anyone less qualified than that. I wish I had known that.
The doctor told me that they were going to transfer her to the nearest Children’s Hospital via ambulance. I asked if we could just drive there ourselves, and she said no because they had already started an IV. I wish I had said no. I wish I had asked more questions. No one told me that we had the option of a different hospital with a huge pediatric unit. I found out later that they gave my husband and my mom that option, and no one thought to tell me.
I called our older daughter (18) and oldest son (15) and told them what was going on. Told them that Dad was coming to get them and their little brother (7) to bring them into the city to be at the hospital when their sister and I arrived by ambulance.
My poor, anxious daughter had to be strapped to a bed to ride in the ambulance. I wish I had said no to the whole ride. I understand that she had a brain tumor, but she wasn’t in immediate danger. We could have driven her ourselves. I am prone to horrible motion sickness. I tried so hard to stare out of the tiny square of windshield visible from the back, but the EMT asked so many questions. I had to repeat everything I had already told the ER doctor. We had to drive for an hour. In the city, we ran into a parade and had to take an alternate route. I suddenly felt so sick that I was nearly passing out. I asked if they could stop, but they wouldn’t. I had to droop against the harness they made me wear, and I lost consciousness for a bit. I remember wishing when I came to that I had just died.
We got to the ER. We never saw a neurologist or neurosurgeon while we were down there. A doctor came in and gave her a dose of steroids via her IV. The billing woman rolled her little cart into the room to make me sign stuff promising to pay whatever they billed us. A nurse came and lead all six of us up to the oncology floor and left us in a large patient room. About ten minutes later, she came back and said that our daughter was being moved. She lead us to the neuro floor and a smaller room. My husband and the other kids waited with us until midnight because he wanted to see what the neurosurgeon had to say. This Children’s Hospital does not have a neuro-oncologist. I wish I had known to take her to a place that did. No doctor showed up. My husband and the kids left. We live in the same town as my parents and sister. We had a lot of friends willing to help. Someone else could have been there for our other kids. Her father chose to go home, rather than stay with us in the hospital. She and I went to bed, with no answers.
