Family Night at Temple Square

Meghan calls this statue "Jesus in space."
That always cracks us up.

Funny comments aside, I can't stand in front of this statue, without feeling awe, without feeling the power, the grace, the love and the divinity of our Savior. It's breathtaking.

We've been meaning to take the kids to temple square for a long time to visit with Grandma and Grandpa who are serving a full-time mission there right now, and we finally took them last week. We had such a great time. We've decided we need to go more often. We enjoyed walking through the gardens, and we loved the visitor's centers, seeing all the displays, the statues, and the neat little films they have. We ate dinner at the Garden restaurant on the top floor of the JS memorial building with Grandma and Grandpa on their dinner break. It was so beautiful over looking the temple. As I watched our children play on the bench looking out the window, I felt a little bit of heaven. You know what those moments are like. It's those rare moments where you tell yourself to take a picture in your mind and cherish it. I'm not sure why it felt so good, but it did. I just love our little family. We are so blessed.

Neurofibromatosis Type 2

First of all I want to thank all those of you who have been praying for healing and peace for me and my family. We have felt the comfort from your prayers and are grateful to have such wonderful supportive friends and family. Thank you so much! We love you.

Many of you have asked about my recent diagnosis, so I've decided to explain it here on the blog to keep everyone in the loop, and to hopefully answer everyone's questions. Please excuse the technical details here, I apologize up front if it's boring or too much medical jargon. It's just that many of you have asked for the details, so here they are.

We discovered in Sept. due to a recent brain MRI scan, that I have two brain tumors. They are called hypoglossal schwannomas. They're small tumors just above my brain stem attached to the hypoglossal cranial nerves which are responsible for motor control of the tongue. I was also diagnosed with neurofibromatosis type 2. NF 2 is a genetic disorder that results in tumors growing on the spine and in the brain.

50% of people with NF2 got it from a parent, the other 50% had a spontaneous gene mutation. The doctors think it's likely I got the disorder from my dad. I can also pass this on to my children. Each of my kids has a 50% chance of having it. My dad's brother currently has an acoustic neuroma/schwannoma (which is the kind of tumor I had 10 years ago). The treatment recommended for me is surgical removal of the tumors. Radiation is not a great option for me, because with people who have NF2, the radiation will shrink the tumor it's aimed at, but causes more tumors to grow in the surrounding radiated tissues.

My tumors aren't currently causing disfunctioning thanks goodness. I've been told the tumors can't be removed without destroying the nerves they are attached to. That means as a result of surgery, I'd lose the ability to move my tongue (unable to swallow and speak) The doctor said once I've had both tumors removed, and both cranial nerves were damaged, that I'd have to have a GI tube for eating, and have to learn sign language to communicate most effectively.

In order to give me quality of life for as long as is possible, the doctor doesn't recommend surgery until it's absolutely neccessary. It would become absolutely neccessary when the tumors get big enough to put pressure on my brain stem, or when they've already destroyed nerve function and I can't move my tongue anymore anyway. The doctors don't know how long I've had the tumors and at what pace they are growing. There is some good news here though. The doctors say these types of tumors, or schwannomas are relatively slow growing and have probably been growing for 6 years, so it could be several more years before I need to have them removed.

All in all, we know this is not a great diagnosis. But we're not content to just sit around and wait for these tumors to grow. I've already contacted online some other doctors, specialists in this field, who are interested in my case and wanting to see my scans. One of them wants to take my MRI's to an upcoming neurological conference to review. Hans & I both strangely feel like everything is going to be okay. We're not sure what that means, but we both feel peace, warmth & reassurance. We feel like the Lord is with us and carrying us through this emotionally difficult time.

The GOOD NEWS.
1. We have time on our side. The tumors are slow growing, by the time they are problematic there could be new technology to get rid of them.
2.Thank goodness, I am not symptomatic yet.
3.My spinal MRI's turned out fine, no tumors. Hallelujah!
4.Because we now have the NF2 diagnosis, we can watch our kids for symptoms and hopefully catch them early on. McKenna is having a brain MRI on Thursday. I'll also be scanned often to detect future tumor growth.

Thank you, thank you, thank you to all of you who are so concerned and prayerful on our behalf. We so appreciate your friendship and love. We know the Lord can work miracles and we have all the confidence that He WILL work miracles for our little family.

I'll try to update this blog with any pertinent information as we get it.

Monday's Memories "Ballerina Babies"

I got the idea from a friend to do a "Monday's Memories" post each week and highlight some photos from the past. These photos of McKenna and Meghan were taken 3 years ago. They look so young here and so precious. Kenna was 5 and Meggie 3.