Lucy was diagnosed with a brain tumor (desmoplastic astrocytoma) at the age of nine months. For a few months prior to her diagnosis, her eyes had been flickering and jiggling with a condition known as nystagmus, which two different doctors told us not to worry about. Meanwhile, she was eating poorly and her sleeping habits were horrific -- every time she would lie down to sleep she would awake within an hour or two, screaming. Thankfully, we finally took her to another specialist who immediately ordered an MRI and the egg-sized tumor in the center of her brain was discovered. After a brain biopsy told us what type of tumor she had, and after her oncology team decided the location of the tumor made it inoperable, Lucy began a course of chemotherapy that would last nearly eighteen months. She had a broviac catheter inserted in her chest and we became weekly visitors to the pediatric oncology department at the Cleveland Clinic. We spent every Monday there, usually from about 8am until 3 or 4 pm. Lucy's chemo was part of a clinical trial, an IV course of carboplatin and vincristine, administered with a cocktail of Benadryl and Zofran (for nausea). We brought massive bags of videos and books and Lucy's favorite stuffed animals from home. We brought snacks and drinks, packed our lunches, and settled in for a long day. After a few weeks of chemo Lucy became neutropenic -- her white blood cell count was dangerously low and her immune system seriously compromised. Every Monday would begin with a blood draw and we would wait -- sometimes several hours-- for the final blood count to come back from the lab. Often her counts were simply too low to get chemo and we would be sent home. We soon learned that patience was an absolute necessity, and the unexpected should always be expected.
Lucy's doctor had told us that the first twelve weeks were a sort of "trial within a trial" -- if the tumor responded to the chemo (and they told us "responding" would mean not necessarily shrinking, but simply not growing more), then that would be a very good sign. After twelve weeks of chemo we got the best possible news. The tumor had responded. In fact, the tumor had shrunk by a measurable amount. Over the course of the next year and several months, the egg-sized tumor became the size of a grape, and then a pea. Of course, during that same time period, Lucy had countless infections -- pneumonia and other upper respiratory infections, ear infections, and several scares regarding infections in her catheter. She was frequently neutropenic, repeatedly hospitalized, and constantly on various antibiotics. She had ear tubes and chest X-rays, CT scans and a blood transfusion, and too many MRIs to count. Every day we injected her catheter tube with Heparin to prevent blood clots and I frequently had to inject her with Neupogen to increase her neutrophil production. Wearing masks and sterile gloves, we had to clean her catheter site every day with a harsh alcohol scrub which burned and irritated her skin. We had to learn how to clean and replace her catheter caps and try to keep our house as germ-free as possible -- not easy with three kids under the age of 6. My husband and I both lost weight, sleeping and eating irregularly. I had nightmares and frequent anxiety attacks and found myself often on my knees in tears, praying desperately that God would heal Lucy. Sometimes the only prayer I could put into words was just "help me". I needed to learn how to find joy despite my overwhelming fear and worry about the future. My first and greatest fear was that Lucy would die. But even if she lived, I was terrified that she would have some significant sort of brain damage from the large tumor she had had. (Her neurologist believed she had probably been born with the tumor. He described it as "a bulldozer -- slow moving but destroying everything in its path.") But --Praise God!-- our news was good. The tumor was shrinking! Each delay, each infection, each hospital admission, was frightening and anxiety-producing, but our "big picture" was undeniably optimistic.
What made our trials more bearable was the fact that Lucy was clearly improving. Her sleeping habits were getting better and she didn't scream in pain whenever she would lie down. She started to eat better and her nystagmus eventually stopped altogether. The other thing that got us through these long days and months was the support of our friends and family. My parents relocated from North Carolina to help with the kids, and Bruce's parents drove up every day for months at a time to do the same. Our friends from the neighborhood and from our church and other churches sent us gas cards and parking vouchers, and every Monday evening after we returned home from a long day at the Clinic, we were greeted by a friend or neighbor with a hot meal for our entire family. Lucy's two sisters were quite young at the time -- just 4 and 6-- and many friends made a point of bringing them special gifts or taking them out to dinner or the movies, perceptively recognizing that their lives had been thrown into turmoil as well.
Lucy's last chemo was February 14, 2005. By this time, she was walking, talking, potty-training, feeding herself, and doing all the things a high-spirited toddler would be expected to do. We made the decision to remove her broviac catheter even though we knew the tumor could start growing again at any time. But we wanted to take our girls to the beach, let Lucy swim in a pool and splash around in the ocean -- things she could never do with her "tubey" hanging out of her chest. And finally she was able to do something she hadn't been able to do since she was nine months old -- take a bath. I didn't have to hold her with me in the shower any more -- which was getting pretty challenging with a two year old.
So here we are in 2017 -- twelve years after that last chemo-- and Lucy is now fourteen years old. She did end up losing about 50% of her vision due to optic nerve atrophy from the tumor, but her remaining vision is functional and she does very well in school and her activities. She lost her sense of smell for many years but it started to return a couple of years ago. Miraculously, the tumor didn't cause any cognitive brain damage or delays. Lucy will continue to have MRIs on a regular basis to check on the status of the BB-sized tumor (which has been stable for many years now). She just registered for her high school classes and finished a recent performance as Rafiki in The Lion King at her middle school. She is looking forward to studying musical theater over the summer at Interlochen Center for the Arts in Michigan and being a part of the Jackson School for the Arts at Jackson High School in the fall.
We are so grateful to our friends and family, Lucy's doctors and nursing teams, her counselors and specialists, her teachers and music directors, and our church family, for all they have done throughout the years to improve Lucy's health and her overall quality of life. We thank God for the miracle of her healing, for the many gifts she has been given, and for the blessings each day brings to our family. On this page we are including a video of Lucy singing "Be Not Afraid" by Craig Courtney. Lucy offers this song as a reminder to all who have to go through the frightening, dark battle with cancer that God is with them through it all. "When you pass through the waters I will be with you; when you pass through the floods they will not sweep o'er you, when you walk through the fire you will not be consumed. You are mine, you are precious in my sight." (From Isaiah 43:1-4)