Guess that's that

Well, Ashley started her new medication a couple of days ago. The Liver Function Test came back with good results. This medication is an anticonvulsant which is used to control seizures, but it can also be used to treat other conditions, including severe migraine symptoms, and so the oncologist thought it might be worth trying to see if we have any better results than with the tylenol. This medication poses risk to the liver, which is why she has to have the labwork done periodically to monitor. It also comes with some other risk to possible adverse side effects, but it does say that they could go away during the treatment. The primary side effects with this particular type are nausea & indigestion so they said it might help if I give it to her with food. The other two main side effects are drowsiness and hair loss. The hair loss shouldn't be substantial like the chemotherapy would be though. She's still needing to continue taking her tylenol at the regular intervals, for now, but if this new medication is helpful then we should see the pain ease up in intensity & frequency soon, although he didn't really say how long he thought it might take to really show an effect so I need to ask. Ashley's next follow-up appointment is in a week and a half, on June 4th.

Courtney has her appointment with the specialist tomorrow morning. The conscern is still Scleroderma so prayers are appreciated for that, too, please.

Oh, I got my results back on the audiogram and my mammogram. Hearing turned out fine so not sure what they are planning to do next to determine what the problem is. My mammogram was clear/no cancer, which I didn't really think there would be. I'm sure the ultrasound will come back showing something more like fibrostic cysts. They put me back on estrogen so that should help. For those who don't know,.. I had to have a total hysterectomy 2 years ago,.. hence, the estrogen. Guess that's that.

*ugh* Incompetency!

Ashley had her blood drawn yesterday for her Liver Function Test (LFT). To put it mildy, it was AWFUL. For starters, I will admit that children's veins are much smaller and can be difficult to find,... this is a fact. However, these nurses did not appear to have any experience drawing vlood on children whatsoever. They stuck my child 4-x's in the right arm, before deciding to try the left, I was getting upset, and I was just opening my mouth to demand that they stop,... but she got it,.. 2nd try, left arm. I was livid. I didn't even realize how many times they had actually stuck Ashley until after we got back home because I had been trying to calm her, and I can't watch that stuff anyway... I get too woozy & would pass out. After seeing her poor little arms, I wanted to just bawl. Ashley had been screaming & crying so much that the entire building heard her.... it was an awful experience, and needless to say, I will not take her back there for labs,.. EVER.

I'd rather drive all the way to Portland where the nurses in the Children's Oncology Ward (our doctor's office) have daily experience in this sort of thing. Yesterday stunk,.. I am just kicking myself for taking her there, but I just didn't take those things into consideration. Lesson learned,.. the hard way. If anyone else out there is ever in this type of situation, please learn from our ordeal, and find someone who has experience before you let them touch your child. Don't just assume, and don't be afraid to ask them. I thought these people could handle it,... I should have asked.

I wish I had something more positive to say, but I just don't. We got through it, it's over,... just have to keep moving forward. Ashley's eye pain is still consistant with no improvements. We should have the results of her lab in the next day or two, and then they plan to start her on the anti-seizure medication.

PS- For those of you who know,.. I had my audiogram, mammogram & ultrasound this morning. I should have the results by next week.

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.