Hannah's story is a bit of a whirlwind, although I suppose you could say that it really began in the Fall of '99. That is when she began having eye problems. From then until Fall of 2000, I had taken her to see two different eye doctors, both of whom only told me that she didn't need glasses. In November of 2000, I finally asked our primary care doctor if her headaches and the blurry vision that had worsened might have something to do with her continued sinus problems. He said no, and referred us to the Mann Eye Clinic. The first appointment available was 4 January 2001. At the appointment, there seemed to be a lot of different testings that I wasn't familiar with, as well as serious looks on the different faces. At the end of the appointment, Dr. Baumohl very calmly told me that there appeared to be something pressing on her optic nerve and that we should get an MRI, preferably the next day. As you and I both know, there has to be something foreign to be pressing on anything, so although I began to get a bit concerned, I tried to stay calm for Hannah's sake. We were set up with an MRI the next day, which was a Friday, and the staff told me that I would hear the results by Monday afternoon or Tuesday. Well, by that evening my primary care doc was calling, telling me that they believed Hannah had a tumor, and they started her on massive doses of steroids. We were at the neurosurgeon by the 9th, the endocrinologist by the 12th. The endocrinologist was the first to see the cafe-au-lait markings on Hannah, and to tell us they were indicators of McCune-Albright. The neurosurgeon was very concerned, because the MRI showed that it would be difficult for them to get to the "tumor". He took her films and passed them around, and someone at M.D. Anderson saw something that led them to believe it might be Fibrous Dysplasia. They sent us for a CT scan, and switched the diagnosis, although there was still some "if" factor. She was admitted to the hospital on the 24th of January for her craniotomy, with them not knowing how long it would take, or if she would be blind when she woke up. You see, the fibrous dysplasia was closing her optic canal and blindness was a definite if they didn't operate. Dr. Baumgartner, the neurosurgeon, said that her bones were so far from anatomically normal, that even with their tracking equipment and the MRI, it was very hard to tell where they were. He, along with plastic surgeon Dr. Teichgraeber, did a reconstruction of her head, and decompressed those nerves. Needless to say, it was very grueling, and she looked quite like an alien when it was over. (Pictures here) She was in the hospital for 8 days, and the surgery did result in her left eye being blind from halfway down, keeping her from reading because she cannot focus. Thank God she is not blind! One of the nice things about the surgery, was that she got to keep her hair. I know that sounds silly in this grand scope of things, but for an almost 13 year old, it was a great boon. Dr. T,  along with Dr. B's assistant, Amy, braided Hannah's hair in the front and back of her incision (Thanks, Amy, for that lovely idea!). This is just one instance to show how caring these doctors and their staff are. You can read more on our doctors page. From there on out, it was simply a matter of getting over the surgery and the effects of the steroids. Since Hannah's "tumor" wasn't a "tumor", she really didn't need the steroids, but it was just one of those things where you didn't quite know.  It's now July, and she still has a way to go before things are back to normal, although they are getting much better. After the bone scans, etc., we found that Hannah not only has craniofacial fibrous dysplasia, she has it in almost all her bones. At this point, her leg is the main issue because she is in a lot of pain probably 90% of the time. We are working with Dr. Epps on this to see what is the best solution for her. As you already know, if you know about MAS/FD, it's just a constant watch. Things can worsen, or they can remain the same. Hannah doesn't have any endocrine issues at this time, and that is a blessing. 

This is an update to all the above. Hannah can SEE! The Lord touched her and allowed her to have the blindness only from exactly halfway down - not considered the part of your eye that determines your vision. The other eye cleared of all peripheral problems - these are both things they didn't think would happen. Dr. Baumohl decided that if he cleared a slight astigmatism with glasses that also had a slight magnification, that it would work - and it did! The astigmatism isn't something they generally fool with because it's common in teenagers and goes away in time. But Hannah was struggling so much that he decided to help it. Thank God he did. When Dr. Baumgartner saw her again and I told him she could see, he just grabbed her up and hugged her in excitement - what a great moment. After seeing Dr. Epps the last time, Hannah now uses a forearm crutch to walk with.  So life goes on, one day at a time.

I couldn't end Hannah's story without talking about God. I don't think anyone's faith has ever affected me the way that Hannah's did. When I told her that first day I was called that they thought she had a tumor, she went to her room and cried and prayed. That's the last time I saw her cry over this. Even as she was waiting to go into surgery, she was as calm as a judge. One thing to understand, Hannah has rarely even been sick, and doctor visits were something of a novelty for her because they were so few and far between. Then to be thrown into a situation of this magnitude, and be totally calm and at peace - I think that's one of the greatest testimonies to the power of Jesus and what He can do in a life - even a child's life. (For more about our beliefs, see our organizational website here.) 

Of course, there is MUCH more to Hannah's story now - she's 18! Another surgery for removal of bone growth in the sinus cavity, and a third surgery for Thoracic Outlet Syndrome. If you want to know more about anything I haven't discussed, or the other surgeries, etc., just email me - pamela @ peppermintmoon.com.

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~ Fibrous Dysplasia ~ Hannah's Story ~ Hannah's Pictures ~
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