Hell on Earth and Moving Up to Purgatory

Saturday, May 18th, 2013 will forever be burned into my head as one of the hardest days of my life because that is the day that my girl, Sarah, was diagnosed with Multiple Sclerosis at the age of 8 years old. It was a day in which I felt that hell had come to settle around me right here on earth

Sarah has had a series of headaches since the beginning of the school year. They would come and go over the course of a day, and she would get one every couple of months. We took her to the eye doctor and was told that her vision was fine. No glasses were necessary. Life continued on with Sarah still getting her periodic headaches.  About 2 months ago the headaches increased in frequency and she was getting 1-2 every week. Because Sarah is a perfectionist I attributed her headaches to stress. I made sure she was getting enough sleep each night, and tried to monitor what would be happening prior to her getting her headaches, but no patter emerged.

On Monday May 13th Sarah woke up with a terrible headache and severe eye pain in both eyes. This headache and eye pain continued through Wednesday when she was seen by her pediatrician. She was given an xray to see if allergies could possibly be the culprit for the headache since her dad suffers from allergies. Her xray came back clear, and the doctor asked that we schedule an MRI for Saturday - just to see. She, like me, had a hunch that something just wasn't right, but neither of us could put a finger on it. MS, I don't think, ever crossed her mind because it is a rare disease in children under 18, and even more rare in pre-pubescent children. In fact, I later learned, that her in 25 years of practice Sarah's doctor has never seen a case of MS in a child. After the xray we were sent home, and told that if Sarah's symptoms got worse to go to the ER. Thursday morning Sarah woke up and vomited. She still had a terrible headache, and her eye pain was excruciating - particularly in her left eye. We went to the ER where she received a CAT scan that came back clean. Sarah was then diagnosed as having migraines, and sent home with a prescription. She woke up on Friday morning without eye pain or a headache, and excitedly went to school. Sarah came out of school Friday after noon and was seeing black dots in her vision. She took 2 naps and felt better. By Saturday, she was watching her sister play soccer when she suddenly went blind in both eyes. Her pupils dilated to the size of her irises, and she became terrified. Because I was still in the hospital Bob came to pick me up, and from there we immediately went over to Children's Hospital. An MRI, Spinal Tap, and several eye exams later her neurologist told us that she has Multiple Sclerosis. Her MRI came back with lesions on her brain, and her optical nerves were extremely swollen which was causing the blindness in both of her eyes. The pediatric neurologist assigned to her case, Dr. T.K. (who is an AMAZING doctor and specializes in MS), started her on a very high dose of steroids Saturday night in order to try and stop the swelling from getting any worse, and then to also reduce the swelling. Sarah stayed on these intravenous steroids until Tuesday afternoon, and began taking an oral steroid on Wednesday morning which she will be on for the next 12 days.

Sarah ended up being in the hospital from Saturday until Wednesday, and was released last night. Her vision in her right eye has mostly come back, but her left eye is not so good. The doctors are hoping that she will be able to recover vision in her left eye, but are not certain that she will be able to do so. It will be awhile before she can see clearly out of both eyes - if ever. I am grateful for the return of her partial vision. I was so very angry with God for a couple of days because I could not understand why he would take her vision of all things. Sarah's big, blue, doe eyes are the most beautiful eyes I have ever seen, and I cannot imagine a world where she would be blind. THAT to me would be inexcusable, and in the event that MS would take her eyes from her in the future then God better be aware that I will find a way to march my ass up to heaven because we will be having words.
Blindness is not an option for Sarah. I will not let it happen. I cannot fathom a world in which my daughter cannot see her siblings as they grow and change. A world in which she cannot do crafts and ride horses. A world in which she cannot see the changes all around her. I will be damned if this disease would try and take that from her. I will be damned if this disease takes anything else from her either.

Our new life will be filled with doctors appointments and adjusting to this disease, and of course this blog will now be filled with entries about Sarah's progress and MS information. For now, we are taking things one minute at a time because really, that is all that I have, is the present moment.


****The above portion of the entry was written on Thursday evening. I am happy to say that after visiting the ophthalmologist today, Sarah's vision in her right eye is almost completely restored. Her left eye is a different story. Doctors believe she will eventually regain vision in her left eye, but she currently has limited vision and is moderately color blind in that eye as well. The swelling in both of her optical nerves is decreasing which is a very good thing. She will be on steroids for the next 10 days, and doctors are hoping that the steroids will help reverse all of the damage done by the onset of the horrible disease. ****