So, we know that it is the Horner's syndrome. And there are a myriad of causes, including a neuroblastoma. That being the worst. So Dr. Richen's orders a scan done in St. George. When we got the results, we were excited, because they said that nothing was found. Dr. Richen's was excited also but wanted to confirm that it indeed was a Horner's Syndrome. So we took our scans on a C.D. and off we went to the Moran Eye Center to see Dr. Katz, a neuroopthamologist. This was a few weeks later, but we were feeling good about everything because they ruled out the tumor. They performed a procedure called a cocaine test. They put eye drops of pure cocaine in your eye to find out if it was a true Horner's Syndrome. The test confirmed that and all the doctors were intrigued because it is so rare and to see it in someone so young. They wanted to look at our scan that we brought with us. Next thing we knew, they were taking it over to Primary Children's to have the neurologist look at it. When the doctor called us back into his office, his demeanor changed. He says, " We have found a tumor at the base of the skull in her neck." My stomach hit the floor. If you have ever gone through this, you know what this feels like. It's indescribable. I put it like this, "now I get it, this is what it feels like to have your child diagnosed with a devastating illness." Nate and I and Nate's mom were speechless. We were here to find what else it could be. That was supposedly already ruled out. I thought this must be a mistake. That first night I cried all night. You think doom and gloom when you get a diagnosis like that. That next day, I woke up and decided that we were going to fight this head on and not be so negative.
Ellie was moving right along with everything as far as growth and development. But one night as I laid in bed with her on my chest, I felt that something was not right. A few days later, I noticed that as the day went on, her eyelid began to droop. By the end of the day, her eye completely covered her right pupil. When Nate came home, he noticed that her pupil was totally smaller than the other. We rushed her to the doc and he thought that her pupil drooped because of a benign cause and that her pupil was probably off and we didn't notice it until the eyelid dropped. I was back two days later because I was not happy with the "nothing is wrong" approach. They said, if we felt better, we could go see an eye doc. When Nate called the doc on the phone, she new what it was just from the description we gave her over the phone. We went in to see her and she gave us the diagnosis of a Horners' Syndrome. The two things combined, drooping eye and different dilation, mean that something is pinching the sympathetic nerve. This began our journey in the health care system.
"Sometimes the pattern of life seems monotonous and discouraging. It is like climbing a mountain and after reaching the top, getting knocked back down to the bottom to climb it again; but I guess the fun is in the climbing and not the arriving!"-Marjorie Pay Hinckley
Nate, Becca, Macy, Adrie and Ellie
I am the author of this blog, my name is Becca and this is our story. My husband and I have four beautiful girls. Macy, Adrie, Eve (who was stillborn) and Ellie. Ellie is the reason for this blog. She was born with a neuroblastoma in her neck and a coarchtation of the aorta. She has congenital heart disease and severe cardiomyopathy due to a late diagnosis. We are hopeful of the outcome and wanted to share our journey with family and friends. I wanted to update her status as of January 2010. Ellie has physically done well despite her heart not seeing any improvement. We are still in limbo of whether she will need the transplant, but we are hoping to avoid that. The tumor was shrinking, but after the last scan appears to be slightly larger. We have a follow-up MRI in February, so wish us luck on that. She is one year old and talking and trying to stand on her own. She is such a joy to us and her sisters and keeps us all entertained.
Macy is such a bright personality. She loves to take care of her siblings and is the perfect non-rule breaker. She is such a good example to her little sisters and is very nurturing.
Adrie is our spitfire and Is our drama queen of the family. But she is extremely tender hearted and is very observant of others and their feelings.
"Some people dream of angels, we held one in our arms."
This is Ellie! She is the reason behind this blog. She is the bravest strongest girl I know!!!
The baby of the family of all girls! She has been such a happy go lucky child. She keeps us laughing with her cute and fun personality!