Sunday, December 13, 2009

Be Brave Daddy

In the beginning of treatment our nurse Annie gave us some gloves and a little plastic syringe to bring home and let Kyle play with and become comfortable with. At first he didnt want anything to do with them. They were put aside and forgotten. Then one day he found them and put the gloves on to wash mommy's or daddy's owie but when we tried "kyles" turn he would rip the gloves off and run to the trash. Bennett will bring gloves home from work occasionally in his pockets. Again Kyle finds them and we go through the routine or Kyle washing mommy's or daddy's but never Kyle. Well this morning Kyle came up and washed mommoy's owie and went to the bedroom to do daddy's. So I went to check on my boys because I heard daddy being upset about the owie. By the time I got there Kyle was actually letting daddy wash Kyle's owie!!! He started to fuss and daddy told him "be brave". So then Kyle showed mommy how he washed daddy's owie and Kyle soothed daddy and told him "be brave" It was such a wonderful moment and I hope that this means it will get easier for Kyle.

Thursday, November 19, 2009

Daddy and Kyle are alike?.......

A couple weeks ago Kyle discovered his Cafe Au La spots on his tummy. He came to mommy and wanted me to kiss his owie better. What a wonderful teaching opportunity Bennett and I were presented with. We told Kyle that he didn't have an owie but that those were his Cafe Au Lait (cafe-o-lay) spots and that daddy had them to. So Bennett showed Kyle his. Kyle's eyes lit up and you could see the connection as he said "daddy spots?", he then turned to me and asked "Mommy spot?" No we told Kyle not mommy only Daddy and Kyle. Daddy and Kyle match, they are the same. Again Kyle's eyes lit up as he exclaimed "daddy and Kyle Match!" and gave daddy a hug. He spent the next few minutes checking out daddy's spots. Having Daddy raise his shirt so he could see them. Then he kept shaking his head like he was sad for me "mommy, no spots. Daddy & Kyle match!" I was so thankful for the wonderful opportunity Heavenly Father gave us to begin introducing NF to Kyle. That is was a beautiful thing and made one little 2 yr old happy to "match" his daddy. I pray for many more positive experiences to teach Kyle about NF.

Wednesday, October 28, 2009

NF Awareness bracelets

We ordered NF awareness bracelets for Kyle. The bracelets are a bright green, the NF awareness color. They are made out of silicon like the Lance Armstrong bracelets. Each one is debossed with the phrase "NF Awareness 4 Kyle" (if you click on the picture you can see the wording better). This is the best method of putting a message on these bracelets and last longer. If you want to buy one to help out Kyle and to help raise NF awareness they are $2/ea. You can email me at chemo 4 kyle at yahoo dot com with instructions, quantity etc. Kyle also has a paypal account for his fundraising efforts. It is the same chemo4kyle email. If you have any questions please let me know. We appreciate all the love and support and we are excited to help bring awareness to the NF community!!

Monday, October 26, 2009


I created this blog to sort of journal my journey as a wife and mother to the wonderful men in my life. I hope to raise awareness to a disorder that is more prevalent than Cystic Fibrosis, Hereditary Muscular Dystrophy, Huntington's Disease and Tay Sachs Syndrome combined. Yet not many people have heard of it or understand what it is. NF is either hereditary or spontaneous. In our family it is hereditary. If you have any questions or would like to learn more read this blog, check out the links on the side or please feel free to ask questions. The single most thing we can do to help is to educate ourselves. Knowledge is power. I hope to help shed some light on NF, help other parents on their journey and most importantly be there for my own NF boys.

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.