Sunday, January 6, 2013, was a typical weekend day. We met my sister’s family for lunch, enjoyed watching our two children and their cousins play, and finished the day reading Dr. Seuss and watching Barney. I never expected that Monday would be the worst day of my life.
After 12 months of taking our beloved 20-month-old daughter Banks to numerous doctors’ appointments with ophthalmologists and neurologists, January 7 was the day my husband and I took her to a large regional medical center to receive an MRI. The test had been scheduled for six weeks, so the anticipation was unnerving. And while my mommy intuition drove me to order the MRI, I never expected what happened next.
The doctors took her back and told us the test would take 45 minutes and someone would come get us when it was completed. After an hour, my heart was racing and I was growing anxious. My phone rang and the call was from my pediatrician’s office. I recall thinking, “Weird, why am I getting this appointment reminder?” My pediatrician explained that she had just received a call from the radiologist with the results of Banks’ scan. She asked me if I was sitting down, and I vaguely remember clenching to the armrest of the chair, preparing myself for bad news.
The doctor told me Banks had a mass in her head to which I replied, "What does that mean?". She said it was a brain tumor and I went white. I was four months pregnant with our son and thought this devastating news might literally stop my heart. The painful memory of a fourth grade classmate who died from a brain tumor flashed in my mind.
Our pediatrician asked us to go to the recovery floor where a pediatric oncologist would meet us to review and explain the results. We were like ghosts drifting down a hallway, silent and white. I immediately called my sister Elizabeth and asked her to call my mom and dad because I didn’t think I could do it. Banks was waking up from her sedation when we arrived at her room, and my husband sat on the bed holding her. I sank into a chair in the corner of the room, focused on suppressing my fear and keeping conscious.
The oncologist said, "It is bad. While a lot of tumors looks like a golf ball or an orange with neat edges, hers looks like a cracked egg. You cannot tell where it starts and stops." We were told the tumor was near her brainstem and appeared to be malignant. She made an appointment for us to meet with a neurosurgeon the next day to discuss a treatment plan that she said would likely include surgery on Thursday and possible chemo or radiation.
We were sent home that morning reeling with our earth shattering news. It was like a bomb going off in your heart and having no control over what happens next. Of course I ignored what everyone tells you not to do in this situation. I turned to Google to try to find answers to what was about happen to our little girl and our family. I remember that my crying woke me up in the middle of the night – I didn't realize it was physically possible to cry in ones sleep.
My sister joined my husband and me at the doctor’s appointment the next day so she could take notes. We realized it would be difficult for us to take it all in and ask the right questions given our frazzled emotional state. Banks ended up having surgery four weeks later at Duke Medical Center in Durham, North Carolina. The doctors did a resection and removed a large portion of the tumor on her right cerebellum. We learned after the surgery that the tumor was benign, and at that point our world got a little better.
It is at this juncture where the stories of the families supported by the Make-A-Wish Foundation get worse. While many people look at us with pity and say we have gone through so much, my husband and I look at it very differently. We are the LUCKY ones. Our precious Banks had a benign brain tumor treated successfully with surgery, physical therapy and routine MRIs. We spent little time in the hospital compared to the families we are raising money for and were able to start moving past this nightmare far sooner.
Most of the families we are raising money to help have been through excruciating experiences that are difficult to imagine much less endure. Some have been in hospitals for months or years, suffering through treatment after treatment and watching their children being robbed of a happy adolescence. I learned first hand how the trauma of having a child with a potentially life-threatening condition impacts families, including mothers, fathers, aunts, uncles, grandparents, friends, teachers and more, in far-reaching ways.
Bob Crawford of The Avett Brothers, whose daughter also has a brain tumor, was asked in an interview about how he gets past the sadness of such an experience. He said, "I think the goal is not to get past it. The sadness is always there, so the goal is to let the joy in to sit next to the sadness, because the human heart or soul, or whatever, is capable of containing joy and sadness at the same time, and high levels of both."
While we will never forget the fear and sadness experienced with Banks during her diagnosis and treatment for a brain tumor, our focus now is to support others in similar circumstances and help bring joy to children with life-threatening medical conditions through the Make-A-Wish Foundation.
In addition to Make-A-Wish, Twine & Twig has also contributed to JDRF, Susan G. Komen, Alzheimer's Association, American Cancer Society, ALS Association, Cystic Fybrosis + many more.
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