Anna can be an adaptive, insightful, kind, goofy, and persistent kid. She loves being silly with her sister and brother, bantering back and forth with her dad, and helping her mom. She loves math and art, and enjoys reading and writing. Given the choice, Anna would probably choose to play games with someone all day. If she needed a break from the games, then she would most likely find a sibling to play with, a pet to snuggle with, or a baby to hang out with. Anna’s unwavering faith in God, her continued hard work, and her positive attitude has been an inspirational example to many during the last four and a half years.
Anna was diagnosed with cancer in early February of 2014, when she was six and a half years old. A few weeks before Anna was diagnosed, she began having intermittent headaches and fatigue. She came down with a stomach bug a week and a half before her diagnosis so we attributed her previous symptoms to the virus, but this time she didn’t bounce back from the virus like she usually did. When Anna began vomiting more frequently, complaining of more headaches, and extreme fatigue, we knew something was truly wrong. Of course, all of this is easier to understand and see in hindsight.
Anna’s treatment included brain surgery to remove as much of the tumor as possible, 6 weeks of high-dose radiation therapy, and an additional 6 months of chemotherapy. During her 9 months of treatment, Anna spent over 100 nights in the hospital; underwent anesthesia dozens of times; experienced multiple surgeries (in addition to the main one); and had more tests, procedures, blood draws, transfusions, and antibiotics than I care to count. During Anna’s treatment, our family life was severely altered. Our other children were 4 years old and 14 months old when Anna was diagnosed. Although all of Anna’s treatment happened in Madison (only a 20 minute drive each way on a good day), we needed lots of help from family, friends, and neighbors to get through each day. While Anna was inpatient for her initial 3 month hospital stay, we had to find childcare for our other children so one of us could stay with Anna as much as possible. My husband worked about 60% of the time during those months. Once Anna was discharged, we continued to need much assistance due to the complexity of her needs. Even though we hired a family helper for a few months that summer, we still asked for and received help (including meals, childcare, and yard work) from many people. The uncertainty of the future and the challenges of each day caused plenty of physical, mental, and emotional strain that entire year.
Anna’s entire neuro-muscular system was affected by her cancer and its treatments. At her lowest point, her muscle strength, coordination, and balance was similar to that of a newborn’s. All of her muscles were affected: large motor (used for walking, climbing, and jumping), fine motor (used for writing and anything else requiring our hands), visual motor (looking where we want to look), and oral motor (used for eating and talking). Anna used a wheelchair as her primary means for a long time and required the use of a g-tube for all of her daily nutrition for several years. Since her treatments ended and she became medically stable, she has worked hard to regain many of the skills she lost. She can now walk independently for short distances, or use forearm crutches or a walker for longer distances. She can also eat much of her daily nutritional needs, although she still needs a g-tube for some of her caloric needs.
Anna’s physical abilities are often the most noticeable results of her experience with cancer. However, like many children who are treated for cancer, she experienced damage to other “unseen” but previously healthy parts of her body. Cancer treatments can be pretty brutal on a child’s developing brain and body. Anna’s intelligence and personality remain intact, but her cognitive abilities were adversely affected by her treatments. She qualifies for an IEP for both her physical and her cognitive challenges. Because of all of this, Anna’s life as a middle school student is very different from a typical child’s life. She does not participate in sports nor can she play an instrument in band or orchestra due to her challenges. She has had a difficult time hanging out and playing with peers because of her physical limitations.
In December, Anna passed away.
In the darkest moments of 2014 when Anna was first diagnosed and in the hospital, what made us most sad as Anna’s parents was that our other children would not have enough lasting memories of their sister. They were both too young to have had Anna’s life imprinted onto them. Although we are sad and will miss Anna dearly, we are no longer concerned in that way for her siblings. We can see clearly how her life influenced both of them.
Through the experience and wisdom of Anna’s medical care team, we were given a gift of five more beautiful years during which our family was able to make many lasting memories with Anna. The limitations on her body due to cancer and its treatments did not prevent our family from finding joy in any event, big or small.
Our family is extraordinarily thankful to The Gold Hope Project for giving us the motivation and the means to have a photography session last fall. We will treasure these pictures of our family always.
Hope Session by Gigi’s Joy Photography | Instagram | Facebook