So, some of you already know, and some do not - but Lucy was diagnosed with Neurofibromatosis Type 1 (NF1). It is actually quite common (1 in 3,500 people have it), and most of the time it is very mild, with little complications. There are multiple websites that explain it - but one of the best is http://www.ctf.org/. In a nutshell - it can happen two ways: 1. Hereditary, so Lucy will have a 50% chance of passing it onto her kids. 2. Spontaneous Mutation - which is how Lucy got it.
In a nutshell, the neurologist started out not worried. Then after an MRI showed multiple brain tumors, he was very worried and started saying they would do all they could for her, and we should try to stay positive. He was putting her in the 3-5% of children with NF1 who don't live past 21. He referred us to a brain surgeon (who is supposed to be amazing) to track her and let us know what to do. While waiting for the appointment with the neurosurgeon, she had a second MRI (three months after the first), and the neurologist was excited and told us that the tumors were not really growing as he had worried, and we didn't have to have another MRI for 6 months.
We didn't want people to treat Lucy differently, and didn't want her to change from this - so we are staying very "matter of fact" and positive. She knows she has the tumors, and that we are watching them. She knows that it means it is harder for her brain to talk to itself, so school is more difficult, but that just means she has to work a little harder.
We finally had the appointment with the neurosurgeon, and he said that most of the tumors were consistent with NF1 and not a worry - except for one in particular that had him very worried. He is ordering a PET scan, to determine if we need to biopsy, do surgery, or if we can wait - how long. So now we are waiting for that test to happen (everything has to wait on approval from insurance).
It is a huge waiting game, and there isn't anything that we can do. There is no cure for NF1, they can only treat the symptoms as they occur. I will keep you all updated as soon as we have the PET scan and get the results.
2 comments:
Wow--What a huge challenge for you, and especially when you are pregnant and dealing with other major stresses (like being a mother of 4 other children, and being the Primary Pres., and working at a job, and on and on). I will keep you and her in my prayers.
Take care, Love, T
P.S. The picture of your three girls is really cute.
I had no idea! I am sorry that you all have to go through that, especially Lucy. I will keep you all in my prayers! Tell the girls I said hi!
Sarah Stever
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