Mommy's Journal...

Well, I'm new to this whole 'journaling online' thing so I guess I'll just start off with trying to bring everybody up to speed on our current events, which is with one of our three daughters,.. for those who are unfamiliar with our journey up to this point. Ashley, our youngest daughter (4 1/2 y/o) has Neurofibromatosis Type 1 (NF1), which is a peripheral nerve disorder where you grow tumors, usually benign, on peripheral nerves throughout the body, but most commonly in the brain, and she is fairly new at having difficulties due to her NF. I knew something was up since her birth because she has so many cafe'au lait spots, but it took me 2 1/2 years just to get her diagnosed. We changed doctors and found a Neurologist who would begin following her condition. Ashley had her first MRI shortly after. Everything looked alright. It wasn't until November of this last year ('03) that she suddenly started complaining of an onset of pain in her eye. With most children, one might ordinarily not think much, and perhaps question if they had poked it, or bonked it, but when you have a child with NF it's different. She complained once, then 2-3 days later complained again a second time, and I called the doctor. My immediate thought was, "Dear Lord, please not tumors!". Ashley had her 2nd MRI in January ('04), and the results showed that she indeed had tumors on both of the optic nerves. These are called, bilateral optic nerve gliomas. They were relatively small, but the left has been larger & longer than the right. The conscern has been the pain because over the last few months the pain has significantly increased going from once or twice a week to once or twice a day to needing recurring medication 3-4 x's per day, and quite often not even subduing it. Ashley has been seeing an opthalmologist and an oncologist for these tumors, and her neurologist also follows, and they've decided to use recurring MRIs and follow-ups with each of them every 3 months to monitor them. The exact cause of the pain is still a real question that, so far, cannot be answered. The oncologist does feel very strongly that it is in relation to the tumors though. A couple of weeks ago, chemotherapy was being considered based on symptoms alone even though her films show no significant growth (a 3rd MRI in April), and her eye sight is currently intact, but because the pain is so severe & recurring and localized. After a meeting with the radiology board, it was decided that chemotherapy should be withheld for now so other measures can be considered. This week Ashley is supposed to go to the lab for a Liver Function Test because it has been decided to try her on a medication that is typically used as an anti-seizure medication, but has also been used to treat severe migraine symptoms. It has risks to the liver so they will be carefully monitoring. Ashley will need a follow-up in 3 weeks. I recently established and built an awareness website for Ashley regarding her NF which is located at http://4ashley.com
I think that brings us up to date,... it has been a very stressful 6 months.