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Mary Katherine Detwiler
Feb 2, 2017 Latest post:
Mar 18, 2018
Welcome to our CaringBridge website. We will be updating this site to keep our friends and family informed of our journey. This will help us share where we are in this season of treatments, appointments, etc. Also...it may spare you from being cried on by me or Michael at the grocery, ballgames, post office, church, or work. Not that any of that has ever happened. Bless our hearts, seeing your baby girl fight like a champ will move you to weepy eyes fast.
We appreciate your support, prayers, and encouragement. Thanks for following our journey. We are so thankful for our community of family and friends. Know this before you read about MK's diagnosis and treatment...we have HOPE. Yes, we have been mad, emotionally raw, physically spent, said some bad words, and weary. Storms of life come to us all, but God has promised they will not overtake us. We are not alone. We are trusting a mighty God and an awesome medical team. I don't know all the answers for this journey or how this year will look. I am learning to enjoy today. This day. It is a gift.
Our sweet Mary Katherine is currently known as the bravest girl I know. The last month has been a whirlwind. I can say now that we are "stable" and are going to make it! My first reaction when we got her diagnosis was to run and hide her for the next year. So many unknowns. So many "what if's". So many concerns. I didn't want to see her hurt, suffer, or have side effects of treatments. It felt like bringing your first newborn home and not knowing what in the world to do or where to start. The Oncology team said we would eventually be pro's at this. Not there yet.
The medical scoop: Mary Katherine is 9 years old and when she was an infant she was diagnosed with a condition called neurofibromatosis (NF1). In our home, we have decided that NF stands for NO FEAR. Take my advise, don't google image it. It will scare you and show you heartbreaking pictures. I was banned by Michael from too much reading when she was young because there are many different things that "could" happen. We are grateful that she has not had some of the common symptoms that accompany this condition. She has done well in school and has not had learning issues, etc. However, NF1 can cause tumors to grow on the nerves in her body.
During her regular eye exam mid-December, there was a mild change in her vision that was not correctable. That was a Friday afternoon. The following Monday, her pediatrician and Papa (my daddy who is a Dr.) made some assessments/calls and she was sent for an MRI. Like, that day. That Monday, a tumor was seen by the Radiologist on her optic nerve. We ended up being referred to a Pediatric Oncologist at Vanderbilt the following week. The Wednesday after Christmas we met the Oncology team, who are quickly becoming our new cheerleaders and friends. We went into this appointment thinking the "growth" would be observed and re-imaged in a few months. However, the Dr. said it was considered a brain tumor associated with her NF1. It required chemotherapy because of the size, location, and her pre-puberty age. Our hearts sank. Our brave girl was taking this in like a rockstar and had some tears of her own. We were given the basics of what we needed to know that day. Two days later we were back at Vanderbilt for 3 appointments in preparation of a portacath placement and chemotherapy. We are learning more each day and with each visit. As a mama, I wanted all the answers and had 1,001 questions. Thank God for a patient Dr. and husband. I now see why they tell you what you need to know as you walk this out. Sometimes our hearts and brains can only process so much at a time. I have my mama folder of files, reports, and notes. It is filling up fast.
A week from her diagnosis with the Oncologist, she had surgery to get a portacath and began her chemotherapy treatment. She began weekly treatments that will last one year. Please keep our MK in your prayers. She is handling this extremely well, overall. We are making adjustments in our life during this season and we are grateful for those who have come to our side to walk with us. This is not a path any parent would EVER choose for their child. But, we know that it can be turned for good. We are determined to look up to those we meet at the Cancer Center and share the love we have so freely been given. I literally stared at the floor the first week. Then the second week I looked around the infusion room to see the bravest and strongest children. True little heroes. You just can't unsee or unfeel that place. It has changed us. It will keep changing us. We are believing for this tumor to shrink and disappear.
A mama in a new season with a fighting daughter, Shawn Detwiler