From the moment our daughter Rylee was born, she has filled our hearts with such joy and love! Never did we think she would later be diagnosed with a genetic disorder that could cause tumors to grow on any nerve ending in her body. But when she was 6 months old, doctors told us she had Neurofibromatosis Type 1 (NF1). We had never heard of it before and after researching it, we learned just how frightening NF can be.
As part of monitoring her condition, she routinely has to undergo MRI’s to scan for anything that might be of concern. At nine months old, it was discovered that she had a stable Optic Nerve Glioma, which is a tumor on her optic nerve. For years we monitored this stable tumor and didn’t feel overly concerned about it. However, in November of 2009, all that changed. An MRI revealed that the tumor had enlarged and had moved from just her left optic nerve into what is called the chiasm. (This is where the individual optic nerves intersect.) The growth of this tumor is of concern because it could impact her vision at some point and now this harmless group of cells has manifested itself into what we never wanted to hear a doctor say affecting our little girl…cancer!
Unfortunately, Rylee had to endure 15 months of chemotherapy. During which, she showed us just how brave and strong she was. Even through all the finger pricks, port accesses, chemo medicine that made her weak and sick, some hair loss, MRI’s and everything else, she never complained. Of course there were times she was scared and sad but overall, she took it all in and held her head up and did what she needed to do. All she wanted was a hand to hold and for us to be there with her through it all. To say that we are completely impressed with her is an understatement.
This experience wasn’t something we thought we would have to go through, but looking back, we can see the blessings of it. Our family is forever changed…for the better! And we’re thankful for the friends and family that carried us through. Rylee finished her chemotherapy in February of this year and has won the battle…her tumor is once again stable! We continue to pray that this life-long war (NF) will not rear its ugly head again and hopefully the worst is in the past! But for now, we are thankful to have our happy little girl back. Watching her smile, laugh and play with her brother and other children again is just what we all needed…and now cherish even more!