Ella Nienow

First post: Mar 4, 2019 Latest post: Jun 29, 2019
Hello everyone-
I have been contemplating starting this site for weeks but didn't want to admit that this might be a fairly long-term thing. I will back up and start from the beginning of our story... It began the weekend before Christmas when Ella was staying at her grandpa's house and her glasses got stepped on overnight, bending the frames. My dad did his best to fix them but they still weren't quite right. As coincidence would have it she noticed that she was having some double vision for a short time beginning that day. The double vision would come and go about once a day for the next week. I really thought that it was due to her glasses not sitting right and after we got her frames fixed and her double vision was not resolved, I knew something more was wrong. This is when we contacted the ophthalmologist but we're not able to get in for an appointment for over a week. Once we got in for the appointment, he took one look at her and knew that she was seeing double and that this was an issue that required further testing and ordered an MRI. He also prescribed a prism to be placed on the right lens of her glasses which would correct her double vision. We were able to get in the next day (1/8/19) at Children's Hospital for the MRI. We spent that day getting her braces off - metal braces could obstruct the view they needed on the MRI, getting labs drawn at the pediatrician's office and then to the hospital for the MRI. Ella then headed to church to teach her 2nd graders at their faith formation class. By the end of the day Ella began to have a horrible headache and was so nauseous she began vomiting which we could not control at home. We were then told to head back into the hospital to get her evaluated. 
It was almost midnight when Ella and I got there, and when she was examined we got the results of the MRI that she had earlier in the day which stated that she had a 7 mm neoplasm or less likely demylenating process on the pons of her brain stem. I work on the Hematology and Oncology unit at Children's Hospital in Minneapolis and I knew exactly what this meant- some sort of mass in a very important part of her brain. We were then transferred to the ICU for the night to keep a closer eye on her neurologically. The next day we met several doctors- a neurologist, neuro-oncologist, hospitalist and the intensivist. Several more tests were ordered in order to determine what this lesion in her brain represented. She underwent a full spine MRI to be sure there were no other lesion anywhere else in her central nervous system (brain and spinal cord), a lumbar puncture (LP) (aka spinal tap) to see if there was any protein, what her glucose level was and if there were any abnormal or cancerous cells, elevated white or red blood cells all of which would give the doctors a clue as to what this lesion is. Every test came back negative or normal. In the meantime it was decided that we would try a pulse of high dose steroids in case this was a demylenating disorder- like Multiple Sclerosis (MS), which would be treated with steroids. She was inpatient for, as Ella would say, 1 hr less than a week. During this time her double vision did not improve and instead she experienced an abundance of side effects from the LP and steroids. She was extremely light sensitive, had spinal headaches, was nauseous and weak, along with her double vision. Her mood was uplifted by all of the visitors she had over the coarse of the week. Now that we are home we are all adjusting to our new normal and Ella is trying to get back into school full time. She is still experiencing double vision, which the prisms on her right lens help with, but over time she develops a headache, is extremely light sensitive and is nauseated throughout each day. We appreciate your support and words of hope and encouragement. Thank you for visiting.

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