Wednesday, September 8, 2010

Neurofibromatosis

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This is a post that I wrote back in January 2010. It tells a little bit about my family and our battle with this disorder, Neurofibromatosis. Please read and share this story with others, and donate today!  I am posting it again today because I have added a page at the top of my blog to tell this story, raise awareness and donations. 

I will also be adding family updates here about any current news with the disorder.  One update does follow at the end of this older post.  Please continue to visit this NF page on my blog to read about updates!



January 2010:

I know that this blog is mostly funny, yet very true stories about how crazy my boys, dogs and life as a stay at home mom are. This post is going to be a little bit different, yet still very true. I do not talk about this often; in fact I don’t even think I have mentioned it before at all. My son and I suffer from a disorder called Neurofibromatosis “NF”, along with my mother and late grandfather.

Not many people have heard about this disorder and even fewer people know what this disorder entails. Our family has been very lucky to have mild to moderate effects from NF. A few years ago however, we had a scare with our oldest son Luke, they found a tumor behind his eye, basically in his brain, called an optic glioma, that they wanted to keep an eye on. Our first reaction was, “oh, crap, what happens if it grows?” Their answer was radiation or chemotherapy with a possibility of surgery. The idea of brain surgery on my two year old at the time was inconceivable. We prayed every night for the tumor to not grow. We went in for scans, and they were no picnic. Since he was so young they had to put him under heavy sedation so that he would not move during the scans. After several pricks, a screaming baby and a flustered mom, they finally got the needle in, only for it to come out again and he woke up. They tried again, got it and he was out. In he went for his scan. Results…it was not growing, for now. Another scan again in a year. After three scans, and three years, we got the news that we were praying for, no growth and no more scans! This type of tumor does not often grow after the age of three. Thank God!

That night we celebrated with champagne. Not only us, but little Luke had his very own glass!! He was so proud, and we felt so blessed.

Though we escaped that chapter in the battle of NF with our little guy we still may have more to come in his lifetime. We continue to pray for him, myself, my mother and all others who suffer from NF. We pray for a cure.



The reason that this post came about is that my husband is running the Houston Marathon this Sunday January 17th for NF. He has sacrificed his time, body and energy into completing this marathon to raise money for NF. I am so proud of him for doing this for us and others that have this disorder. To learn more about NF please visit their website at http://www.nfinc.org/ or http://www.ctf.org/. And if you are able to make a small donation of any kind we would greatly appreciate it. My husband has a secure site that was set up for the marathon and all proceeds are tax deductible and go 100% to the NF foundation, that site is www.firstgiving.com/derrickhaas. I would also be thrilled if you could pass this post onto others. Thank you so much to any of you who donate, and if you can’t just please go to the web site and learn a little bit about NF, a disorder that is suffered my more people than cystic fibrosis, muscular dystrophy and Huntington’s disease combined.


A little update:

We have just found out that Luke is going to have to have more MRI's for his tumor. We thought we were in the clear, but new research has found that these particular tumors can continue to grow and for now it still needs to be monitored. Please keep him in your prayers!


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