I fell in love...

Like many people I had never heard of Neurofibromatosis or NF. It all happened one day when I fell in love with this wonderful man several states away. He would write me poems everyday, we would talk for hours on the phone or instant messaging. We got engaged after only seeing each other once. We both just knew it was right and the other person was the person we wanted to spend forever with. Bennett told me he had NF 1 when we were engaged. He told me that begnin tumors would grow in his nerves and that he had a few removed. He told me that it was genetic and that his dad and grandfather also had it. So I knew there was a chance if we had a son he would have it. Well it didn't change the way I felt about him.

We got married a few months later. And we started on our first journey together to have a family. Only it turned out that I had problems I didn't know about. After 4 years of unexplained infertility I was finally diagnosed with PCOS. We went to a reproductive endocrinologist and within a few months we were ecstatic to find out it finally worked and we were pregnant. Even more over joyed when we learned it was twins. But we were cautioned twin b might not make it. It turns out that Heavenly Father had other plans for us and for tator, what we had called twin b. We lost tator at 8 weeks. But thankfully delivered a very healthy baby boy March 9, 2007. Kyle Bennett Oden was born at 38 weeks weighing in at 9lbs 3oz and 20 inches. It was the happiest moment in our life. Bennett noticed the cafe au la spots right away. So we discussed it with Kyle's pediatrician at his first appointment when he was only a few days old. Our doctor knew about NF and said we would keep an eye on it. Having cafe au la spots doesn't mean you have NF it is just an ear marker. Kyle was always very healthy never had an problems.

Fast forward almost 2 years. in Dec 08/Jan 09 a couple friends asked if Kyle had a lazy eye. I didn't think so but we checked it out and thought there might be something wrong with his right eye. I called and got an appointment with a children's eye doc. We went in on Feb 11th. Bennett had just started a new job and I didn't think much of it so I just took Kyle by myself. They doc came in and examined his eyes and then decided to dilate them. He didn't like the way the right eye looked. It did protrude out farther than it should. The doc asked me about family history. I didn't even think of the NF. Once the eyes were dilated he saw signs of hemorrhaging on the optical nerve and confirmed Kyle had no vision in his right eye. He can only tell the difference between light and dark. On Feb 13th we were in at Phoenix Children's having an CT Scan. It showed a mass on the optical nerve. The next Wednesday we were back at PCH having an MRI with confirmed Kyle had an optical pathway glioma on his right optical nerve, or in nonmedical jargon he had a tumor. We met with a pediatric neurosurgeon, a geneticist to confirm NF and finally met with an oncologist. In March Kyle had a port placed in his chest and in April we started a 13 month regimen on chemo to shrink the tumor. The doctors were hopeful that we caught it early and that Kyle should regain most if not all of his vision. We did 10 weeks straight of chemo every Friday as an induction period. Than we had 2 weeks off where Kyle got another MRI. It showed the tumor was stable. Bennett and I hoped for something better because Kyle's eye had gone back in the socket. We did find out that the tumor was causing so much pressure that there was a lot of swelling. So with the chemo it alleviated the pressure and so the swelling went down. We are now on maintenance which means we have 4 weeks of chemo and 2 week break. Kyle had another MRI on September 21 and it showed the tumor had shrunk slightly. We were overjoyed that we seemed to be going in the right direction. We took Kyle out for pizza and arcade games the day we got the news. We are set for another MRI in December and hope for more improvement. No matter how small as long as we are heading in the right direction.