In August 2010 I noticed that my 16-month-old daughter, Bayleigh, was starting to fall a lot. She kept running into things and seemed really off balance. Of course, she was doing these things at the same time that she was perfecting her walking skills, so it was hard for me to know what was normal and what wasn’t.
Around that same time, she began to nap more frequently, sometimes sweating through her pillow. When I noticed her favoring her right hand more than her left (just slightly), I decided it was time to take her to the doctor. As I scheduled the appointment, I was sure that I seemed like the type of mom who panicked about the smallest things. But I didn’t care. Something deep down told me Bayleigh needed to be evaluated.
When I explained the multiple, and vastly different symptoms to her doctor, she told me it was probably nothing, as Bayleigh is a toddler and still learning how to walk and run. But she could see the concern in my eyes, so she said she would schedule an MRI within the next three weeks. A feeling of doom washed over me. Something told me this needed to be resolved sooner.
The feeling of uneasiness continued as I sat at the dinner table that night. I knew something was wrong but I couldn’t put my finger on it. As we were eating, Bayleigh’s doctor called with the date of the MRI, which was still scheduled for three weeks out. I told her how concerned I was, and she heard me out. She told me that I should always trust my mommy instincts and said she would let Cincinnati Children’s know that we were on our way—if that’s what we wanted to do.
And we did. We left immediately for Cincinnati Children’s, after dropping our oldest daughter, Makenzie, at her grandma’s house.
After we arrived and explained the situation to the doctor, he ordered a CT scan. Then we waited. For what felt like days. At 1a.m., a physician walked into the room and asked me and my husband to sit down. The CT scan showed a large mass on Bayleigh’s brain. It felt like I had the wind knocked out of me, and I couldn’t breathe. I knew at that moment that our lives would be forever changed.
Further testing showed that Bayleigh had a tumor the size of a racquetball in the lower right portion of her brain. The neurosurgeon showed us exactly where the tumor was located and the massive pockets of spinal fluid surrounding the tumor.
Then he said something that I will never forget: if we had waited three weeks for the scheduled MRI, Bayleigh would not have survived. It was at that moment that I realized the power of motherly instincts. The connection that I felt to my daughter – and that any mother feels with her children – is very real and I’m so grateful that I listened to it.
He went on to explain that her tumor was growing at a rapid pace. And she might be favoring one side over the other due to the swelling in her brain. After a biopsy and further testing, we were told that Bayleigh had a stage 2 pilomyxoid astrocytoma. It was a type of brain cancer, and she needed surgery to remove it.
On August 26, Bayleigh had her first surgery. It lasted most of the day. When she woke up, we discovered that she had lost all use of her left side. Before the surgery, her doctors told us there was a possibility that this could happen, and if it did, she could regain some use with physical and occupational therapy. But my heart was broken and heavy. I wished it was me going through this instead.
Two weeks later on the therapy unit, Bayleigh started to cry continuously and showed signs of pain and frustration. I was worried and asked her doctors if this was normal. They said that it was, but I was still concerned. When her neurosurgeon agreed to come in on Labor Day weekend to see her, he evaluated her and said that her brain was swelling and needed an emergency surgery. He then performed a procedure that implanted a shunt to drain the spinal fluid into her stomach.
While Bayleigh and I spent 42 days in the hospital, we tried to keep our oldest daughter, Makenzie, living life with as much normalcy as possible. She continued to attend third grade. She stayed with family when her dad wasn’t home. But whenever she had the chance, she was at the hospital with continuous smiles and encouragement. She attended therapy sessions with Bayleigh, played with her, and even helped take care of her. Her spirit is what kept us going.
After Bayleigh’s second surgery, all I could think about, all I wanted to do, was take her home. Get back to a normal life. When we were finally able to go home, reality finally hit me. Our “normal” life was gone. Our lives had been forever changed.
Because of all of the follow-up appointments, therapy sessions, and 24-hour care that Bayleigh required, I had to quit my job. She was in and out of the hospital for the months following her surgeries due to viruses and complications with her shunt. She had to relearn many of the milestones that she had already passed, like “tummy time” and walking.
But I wouldn’t change any of it, because Bayleigh is still with us. She is four years old now and cancer free! She still wears a brace to help her walk and has a splint for her hand. She has exceeded all of our expectations: she is an intelligent, beautiful, feisty, strong and happy. I love everything that she has become and her success has helped me heal.
And without realizing it, she has taught me some things along the way. Most importantly, to trust my instincts. I know my children better than anyone else and have a connection to them that allows me to pick up on things that other people wouldn’t.
Her journey with cancer has also taught me to enjoy every second of every day because it can all change at any time without any notice. This is why I turn the radio off when we ride in the car. And why I will never be upset about muddy feet in the house. These are memories that I am grateful for each and every day.
You can help support the research and clinical care that saved Bayleigh’s life. Click here to make a donation to the Cancer and Blood Diseases Institute at Cincinnati Children’s.