It's a keeper!

Ashley had her appointment with the ophthalmologist on Monday. Sorry I haven't updated on that until now, but this week has been pretty busy, as most are. She looked adorable, and got a lot of attention as we left,.. wearing one of her special hats, and a pair of dark sunglasses to protect her eyes after having her eyes fully dilated. It takes hours for them to go back to normal, and even a little light can be terrible painful.

Anyway, the doctor appointment Monday, it went well though,.. there are no visible changes in her vision, and he, too, is still baffled at the eye pain epsiodes. We go back for another follow-up in 3 months,.. Tuesday, October 19th.

Speaking of the eye pain episodes,.. I didn't really think that the anti-seizure medication had really been showing much improvement for her, but this past week, we pretty much eliminated her taking it (she is getting pretty sick of it, and so I thought I'd give her a break in order to see what would happen). Anyway, after several days, the really bad episodes came back. So, although she's not happy about it, we will be continuing the medication!! Apparently, it's been helping more than I had even realized. The last few weeks have been so busy that I hadn't really noticed that the episodes, although still fairly regular, had not been so high scale in severity. I noticed that w/o the medication, that the neck pain also came back, whereas it seemed to have subsided. She also had a few episodes wake her in the night which has been rare. I'd say, for now, the medication is definitely a keeper! Anyway, something to discuss further with the oncologist when we see him this Monday. I'm wondering if we should consider increasing the dosage a little bit more,.. perhaps we'd eliminate even more of these occurances, and severity, but at the same time, I don't want her liver to be put at any extra risk than absolutely necessary either.

I also want to discuss any possibility of pushing her MRIs out a little farther,... we just can't handle adding another $1,000 -$2,000. to the pile every couple of months. They're eating us alive.

Anyway, I'm trying to get more involved now, too, with the Oregon NF Support Chapter, as well as people linked to the National Neurfibromatosis Foundation,... to see if there are any other alternatives, suggestions, or whatnot they can help us come up with before we're burried in medical debt. I'm making new NF friends, too, which is excellent support to have in addition to all of you. I have a new friend, Melinda, whom also has NF, as does her daughter Shaylee, who is a year younger than Ashley. Shaylee & her family live very near to us,.. they are only about a 25 minute drive away. Please also keep Shaylee in your prayers when you are remembering Ashley,.. Shaylee is currently undergoing chemotherapy for her bilateral optic nerve gliomas, and she ended up spending this entire past weekend in the hospital due to a spike in her temperature. She may have contracted something which can be very, very dangerous when you've just had treatment. A sudden high fever can be a first sign of this. We know about this because Ashley's Grandma Carol goes through chemo for her cancer. Anyway, please keep little Shaylee, her parents, her two brothers, and her baby sister in your prayers. They need them, too!

Have a gr8 day,.. the weather is awesome, just a bit HOT,.. they said they aren't ruling us out on getting into the TRIPLE DIGITS before the weekend! Well, they sure weren't kidding,.. it's currently 102 degrees here right now! Ashley's daddy has been working in southern Oregon all week, and he said today that it was 110 by Noon!

Oh, before I close today,.. Remembering Ashley's Grandma, Carol,... Her CH125 counts went from 11 to 23 in the couple of months before the last, then just in this past month she went up further to 34. By the time she has her CAT scan and further bloodwork, prior to starting any chemotherapy again,.. another 3-4 weeks will have gone by. The doctor did tell her that as long as her numbers stay under 50 that there is no reason to panic yet, but we are conscerned about letting it get so close to that. By the time she starts her third round of chemo, her counts could be only a few digits below that so please pray that God will sustain her numbers, and that they will show a positive reduction rate with this next round of chemotherapy. Please also pray for the pain & discomfort that she has as a result of certain tumors, to be diminished... she needs our prayers for peace & strength, too. I know she has to be just as worried as we are, although she's such a trooper she never likes to let anyone know when she's struggling with it, and never wants to worry anyone else.

That's just the incredible person she is,.. We love you, Gma H!!! (((BIG-BIG HUGS)))
Thank you all, again, for all of your prayers & support for both Ashley (& her Gma),.. I'll plan to post again after we see the oncologist Monday. Until then,.. have a safe & happy weekend, drink lots of water, and don't forget your sunblock!!