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Courageous Cailynn 2016
Aug 21, 2016
Cailynn is our 7 year old daughter. She is my brave heart. In May of this year Cailynn started complaining of her arm being sore. We gave it a week or 2 with the thinking that maybe it was a pulled muscle then took her to her nurse practitioner when the complaint was every night at bedtime. An x-ray was ordered of her arm to check her growth plate. Everything looked good. We were then sent to an Orthopedic surgeon where 4 more X-ray's of her right arm were taken to re-check growth plates and rule out any tumors on the bone. From here an MRI of her shoulder was ordered, which came back inconclusive. Through all this time Cailynn was her normal self all day until bedtime with the pain escalating nightly and still having no answer. We were in the beginning of summer and my child was becoming exhausted from not getting sleep at night. We were referred to the Pediatric Ortho in Greenville. They wouldn't see her until they had an MRI of her cervical spine. Getting up multiple times a night turned into crying in the middle of the night, to total crying discomfort on car rides (esp to and from columbia), through out the day soreness with the most miserable nights that nothing would touch it. While waiting for the approval of the Cervical spine MRI the pain had escalated to the most unbearable pain that my little girl didn't want her arm, it became a stabbing pain, her thumb was burning she was bitting it, she was so scared she didn't want to die. I could wait no longer in this final day of pain. June 27th I rushed her to Greenville memorial children's Shriners hospital. I almost thought we were going to be turned away and in that feeling I told them I wasn't leaving until I had an answer. All I heard from the ER doctor was "we have so many case blah blah blah," lady this is my daughter and I know something is WRONG. After her assessment of Cailynn, seeing her pain and weakness, not even being able to sit up and stand straight she said "mom you're right, we will get you an answer and we will get you there faster." We were admitted and getting her out of pain was their first and foremost goal. They did and by 11 pm by baby girl was sleeping peacefully the most solid sleep she had had in 6 weeks. The MRI was scheduled for the next morning. The MRI brought our answer, well the first step to the answer, and revealed there was a growth between c5 and c6 of her cervical spine. When you hear this you immediately think cancer. Another MRI was done the next day of her brain and complete lumbar spine. Which concluded to be excellent. So this was the region of focus. We were put in the hands of Dr. Chris Troup Pediatric Neurosurgeon for her care from here. With her pain being controlled and seeming like her normal self again, not wanting to put her straight in to surgery causing permanent damage to her bicep of her right arm, and feeling certain there was a window of time he wanted to seek a second and third opinion from very respected world renowned Neurosurgeons in Salt Lake city and Atlanta and get their insight. We were discharged from the hospital. We returned to his office in 2 weeks. It had been a great 2 weeks. This growth was speculated to be a benign nerve sheath tumor which they have all seen plenty of and agreed to just watch it and wait. We would return in 2 months believing it should not change and could be controled for a time with pain medication (not a narcotic). Because of this growth Cailynn had a weakened push, pull, lift and lower of her right bicep. He wanted Cailynn to do some physical therapy to see if she could regain any strength back. She did 3 weeks of therapy and after week 3 I noticed pain was returning. We went to visit my sister in TN and both to and from she could not get comfortable in her seat. After swimming her neck was sore. We did one more therapy session but I told the the therapist she had a rough night the night before (yes even those were back) and I thought the last session was to strenuous. She did more of a massage therapy. After the night getting worse night by night I called Dr. Troup's office and got an appt for the following Tuesday. This waiting seemed so long and as each night passed with her waking up all through the night I knew that it was changing. August 16th we went to her appt. and after doing an assessment of motor and strength he notice she was significantly weaker and immediately ordered another MRI. I closed that doctors office (we were the last ones to leave) bc I wanted them on the phone getting me the first available MRI and getting back to his office the following day. No more waiting I needed the answer. The MRI was the next night and we returned to his office the next morning August 18th. By this point Cailynn who is right hand dominant was using her left hand for everything except writing, she could not run or yell without it hurting her neck, and she twisted her torso to see left and right and could not look down. She also started to have pain in the left upper arm. The scans were reviewed. The tumor had changed...quite significantly doubling near tripling in size growing further around and on the spinal cord compressing the spinal cord sac. Surgery was our only option. It was scheduled the next morning at 8 am August 19th. We arrived at the hospital at 6 am to begin the check in process. These 2 hours went by fast with signing lots of papers, answering 1000 questions (not really), seeing the Neuro Tech, the anesthesiologist, the nurse that explains the process kid friendly and decorated her gas mask, to finally seeing Dr. Troup and asking final questions. We said a prayer. We walked her to the doors and said "we'll see in a little bit" She did so good up until this point and it took every ounce in me not to break down. I checked in and got our pager to get updates as we watch her number change color on the screen. An hour in our update was they started surgery. Another hour he was at the tumor everything was good she was ok. Another hour still at the tumor. Another hour closing up. Another hour and a half he came out to the waiting room. I had the blessing of having our long time family friend Mack Bayne, my childhood and young adult pastor Alex Stevenson, my current church pastor Dr. Greg Butler and another man of our church John Osborn. Also my amazing husband, my support, shoulder to lean on or cry on, the love of my life and the father of our beautiful little girl. Prayers from hundreds of people. And most of all GOD. Having five men in conversation you can only guess what men can talk about. It kept me busy and laughing so these 4.5 hours didn't seem that long. Though this entire time my intuition was uneasy, something in my gut just didn't feel right. I still kept strong to my Faith and staying hopeful and praying. Little did I know that my world was about to stand still in time for a moment with the words I would hear next. Dr. Troup's words, "The outcome was not what we had hoped for. What I originally thought and what looked like to be a benign nerve shealth tumor (a yellowish white in color fragile easy to peel away) looks like a malignant tumor (bluish gray and granular stuck having to scrape off). I was only able to get about 80% of it hopefully with out any permanent damage to the nerves and not wanting to damage the spinal cord but being able to decompress it at least. The tissue is being sent to pathology and we will know something as to what this is categorized as in 7-10 days. This is not common, actually rare" I didn't even blink, the tears just fell and I had had to control the sobs to ask questions. We prayed to our amazing father in heaven and rejoiced his son giving his life for us and knowing only he has the true answer. I took a minute to let the floods flow. I wanted to see my baby and just marvel at her beauty, hold her, kiss her, love her. I thanked God for giving her to me, to us. Seeing your child wake up from surgery being confused, asleep, agitated, inconsolable is so heartbreaking. Trying to stay strong for your child who just underwent a complex aggressive spinal surgery and finding out news no one EVER wants to hear really is a test of FAITH. We will take it one day at a time. The "C" in CHRIST is bigger than the "c" in cancer.