Tuesday, May 10, 2016

A Mother's Perspective

I have always had a very close relationship with my mother. Now that I'm an adult, our relationship has grown into a treasured friendship. She lives her life with grace and faces every challenge with faith and perseverance. She has been an incredible support and caregiver throughout my journey with brain cancer. When I started my blog, six years ago, I asked her to write a post so that others might be able to understand and learn about brain cancer from a mother's perspective. A few weeks ago, I approached her about it again and the following post is what she wrote. Love you, Mom. :) 

From the very day my daughter’s brain tumor was lit up on the screen in our primary care physician’s office, we have faced the battle to survive, as a team. That was the last day of September 2010. For once in my life, I was completely speechless, caught completely off guard, and listened to my brave 22 year old tell the doctor that she was way too busy to take time out for surgery, that it would have to wait! Maggie Hinkle was in her Senior year at Cal State Stanislaus, carrying a double major, working part time, and planning a wedding! Not only that, she was the vocalist for the University jazz band and had a performance on the calendar and midterms coming up! She saw the first neurosurgeon the following day and when he recommended surgery, she again pleaded to be allowed to finish her semester and have the surgery over the winter break, after finals. (He too was a musician and they spoke the same language.) I felt like he was speaking in a foreign language and could not take it all in, my eyes must have glazed over as I shut down. Maggie agreed to have frequent MRI’s to monitor the tumor and that if there was any change at all, she would have the surgery, and she gave up driving and rode a bike to her classes. She sang with the jazz band and in the CSUS Christmas Choir program. I was scared to death, afraid for her to wait, afraid for her to put off the recommended surgery. I had been protecting her for her whole life, how could this be happening??? As parents of a determined young adult, we could not make her decisions for her but we would stand by and support her! We prayed constantly and enlisted the prayers of all our friends and family, to pray for her wisdom, for the wisdom of all the medical team and for God’s protection. She blogged about her brain tumor, she even named it! She ordered her wedding gown! And we prayed. She completed her last final for the semester in mid December and had an MRI the next day showing the first indication of change… the surgery was scheduled for December 21st. Brain surgery on my baby. I remember thinking about how I was so careful, even about what I ate, during my pregnancy… I didn’t even eat chocolate! How could she have a brain tumor? We started the day very early, at the hospital at 6:30 AM, but the surgery didn’t happen until 3:30 PM and lasted 4 ½ hours. Surrounded by family and friends, we waited. When the surgeon came out to report to us, he told us he could not get it all but that “it” was going to pathology and he would not “call it” until he got the report. We went in to see her and I remember being so thankful that she knew who we were and knew her fiancĂ© and her brother! She could see us and hear us and talk to us. She would spend the night in the ICU and I spent the night in a chair draped across the foot of her bed, napping and praying. Maggie’s tumor was deep and the part of the brain that controls nausea was disturbed during surgery and it was hard to see her so nauseated for the first few days but her brother and fiancĂ© took the night shifts at her beside. My husband and I were there early and left late. We all felt helpless. I told the doctor that she might be his patient, but she was still my baby! My husband and I held on tight to each other and to our faith in God. We prayed constantly that our faith would be greater than our fear. The pathology report on December 30, 2010, was that it was cancer, an Oligodendroglioma?? Who knew there was such a “thing”?! We tried to joke about the name, but any kind of cancer is a fearful thing. You are up against the unknown. We circled the wagons, so to speak, our son moved home from San Francisco to help us, as much as helping his sister. He made her laugh and that was good medicine. The Sacramento neurosurgeon referred us to Dr. Susan Chang at UCSF and she “threw us all a lifeline” from day one! She, and her team, is amazing. There were two more surgeries, one lasting 7½ hours, and a year of chemotherapy. We learned to give shots and administer antibiotics every 4 hours in an IV PIC line. It is a hard road to travel and you don’t want your child to suffer and all you can do is hold their hand and promise to be there and hope they can’t see how scared you are. You can also be the one who washes the dried blood from their hair for a month after surgery and the one who tells them how cute they look in a scarf when their hair falls out from the radiation. Or, like Maggie’s dad, you can remind everyone on the surgery team, as they rolled her to the operating room, to take as little of her hair off as they possibly can, “remember she is planning a wedding when this is over.” Or, like her Uncle Mark, tell her you will “BUY her more hair! Just get well.” BUT there were happy times: There was a college graduation, (with honors) AND A BIG WEDDING CELEBRATION, she is now MAGGIE HINKLE GUTNIK. She got her teaching credential, and a teaching position at a great school. In the spring of 2014 she put together her first team, Bye Bye Brain Cancer, for the Brain Tumor Walk and we walked with her, proud to be a part of her hard work for an important cause. AND THEN THE CANCER CAME BACK last year in the spring of 2015, LIKE A THIEF IN THE NIGHT!! And two months later we joined Maggie’s Team again, determined to do the Brain Tumor Walk, even if she couldn’t. But she did! And her radiation and chemo was delayed and started the following week. God knew how important it was for all of us to do what we could to raise money for research and come together as a team to support Maggie and all the others who are facing the fear that comes with brain cancer. It still amazes me what a brave young woman my daughter is! She did 6 weeks of radiation and chemo TOGETHER and then 6 more months of chemotherapy since the last Brain Tumor Walk. She has continued to teach school every day and live life, with her amazing husband who has been by her side through it all, to its fullest every day. We continue to pray and try to support them both any way that we can. The easiest way to support them is by participating in the Brain Tumor Walk and feeling like we are doing something toward a cure so that our children outlive us! We look forward to seeing you all at the 2016 Brain Tumor Walk! My prayer for all of us is that our faith will be greater than our fear! Patricia Hinkle Proud mother of Maggie Hinkle Gutnik, brain cancer survivor