This post was written by Jessica Buchannan about her daughter Rylee Buchannan.
Our story begins when Rylee was 6 months old and was diagnosed with Neurofibromatosis Type 1 (NF1), which is a genetic disorder that could cause tumors to grow on any nerve ending in her body. NF1 is caused by a mutation of a gene on the long arm of chromosome 17 and can be inherited; however, in Rylee’s case is a spontaneous mutation which happens in about 50 percent of the cases. The incidence of NF 1 occurs in about 1 in every 3,000 births.
As part of monitoring her condition, we routinely have to undergo MRI’s to scan for anything that might be of concern. As a baby, it was discovered that she had an Optic Nerve Glioma, which is a tumor on her optic nerve. While we have known she had this for a years now, the last MRI revealed that the tumor had enlarged and has 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.
Unfortunately, treatment for this tumor means that Rylee has to undergo chemotherapy. The treatment regimen will last a little over a year with a schedule of 4 weeks on, and 2 weeks off after the initial 10 week phase. Each 4 week session is considered a round, and with each round of treatment there is a 50/50 chance that there will be physical changes that occur as a result of the chemotherapy. With that being said, it is almost certain that she will lose some or all of her hair at some point through this process. There is no other treatment available that would give her a chance to keep her vision completely. Surgery would result in partial if not full loss of sight.
Rylee is currently in the third round of her treatment regime with the current end date of February, 2011. The results of her last two MRI’s show very positive results to the chemotherapy and her visits to her Neuro-Ophthalmologist reveal that she is currently showing no vision loss! This makes our journey a little bit easier knowing we are doing all we can to preserve her vision! Although we are winning this battle, we know that we have a long road ahead of us regarding all the possible side effects of not only the secondary cancers due to her chemotherapy treatment but also to her NF1. We have had wonderful support from the Brain Tumor Foundation for Children.