Another long day...

Well, another long day, but well spent. We got the results back on all of Ashley's tests. Monday's MRI, on her brain, shows no new changes. He said that the right eye's tumor is close to the chiasm, but that it was before (this I didn't know,.. I thought it wasn't even close before, but I might have misunderstood as there is always a lot of information to digest). The chiasm is the part where the right & left optic nerves cross. Anyway, both the left & right tumors apparently still look about the same, which is good. No sudden rapid growth, or invasion. The MRA did show something, but they are unsure whether it is really something or not. Our oncologist is skeptical about that, and feels that there is a good chance that this could be what is causing Ashley's eye pain. The MRA, which with the use of injected dye, scans the blood vessels & arteries for signs of collective blood,.. it's sort of bulgy in a section on the right side, near the tumor, and so that swelling could mean that the tumor is somehow pinching, or causing spasms. He is going to go over it thoroughly with the radiology team, and they will decide whether they feel they should repeat another MRA at the next MRI appointment. For now, we will continue using the Depicote (the anti-seizure medication), and see if it will help with her symptoms. If it does, then we would continue with that, however it there isn't a significant enough remedy, and it is confirmed that without a doubt there is a genuine effect from the tumors that is causing the pain, then we would procede with chemotherapy. It is still going to be used as a last result, and only if it is confidently felt that it would be beneficial to do so, of course. That decision has been confirmed by his collegues that he consulted with at the conference in Boston earlier this week. They too, had nothing to offer for opinion, or suggestion, on what this is, other than migrain... Ashley's case seems pretty rare. He even consulted with the doctor who actually has the largest amount of patients in the country, that have optic nerve gliomas, and even he has not seen this in relation to the NF tumors before, and was puzzled. They are suspicious of migrain relations, but our oncologist is still leaning also towards this finding on her MRA now. She has also started to show sensitivity to light at times, and especially in the right eye, which is suspectful of migrains also,.. but again that could all be from a constriction from that tumor, too. The lab work for the Liver Function Test came back with excellent results, and so it does not need to be repeated for awhile. He feels that we can wait to do it at the next MRI again, which is nice because then she doesn't even know they are doing it. Speaking of the next MRI,.. the next one will be in another 10 weeks, at the beginning of September. He was going to go ahead and start doing them every 2 months instead of the 3 month intervals, but then decided to meet in the middle and go every 2 1/2 months. That would leave the following one after that for around the middle of November then, too, which will make 7 MRIs for the year. She shouldn't need to have another spinal until at least next January, but the brain scans will be quite frequent as I already mentioned. Her spinal MRI was clear with no tumors, thank goodness. Ashley is to see the opthalmologist again on Monday, July 19th, a month from now, and then she will see the oncologist again the following Monday, July 26th. I am also supposed to schedule an appointment with her neurologist for her 6-month check-in with him, for next month (July) also. The oncologist also wants me to document any of the especially severe episodes,.. particularly ones that wake her in the night. The rest he said we don't need to bother trying to keep up with,.. we already know that we can't really pinpoint anything surrounding those since I journaled on them for awhile already.

Anyway, that's where we're at on that. On the way out, we took a couple of minutes to walk through the Children's Garden again,.. the girls all really enjoy that. I do, too. Next, we headed across the river to see friends... one of my very dearest friends & her family. The girls had a wonderful time getting to play with the other kids & their puppies, and I got to sort of unload some of my 'stuff' with my friend & her husband,.. let me tell you, they are both such tremendous friends that I just don't know what I'd do without them. They have been so supportive & I know she is always right there for me. Andrea, you're like a sister to me, and one of my very best friends... you're such an amazing friend!!

The girls & I stopped off for dinner @ Denny's on the way home, and that was fun. They pretty well slept through rush-hour traffic most of the way... wasn't too-too bad, about a little over an hour and a half. We got home just after 7:00 PM, this evening. Pretty tired though, and so we're off to bed.

Brittney has a follow-up with her orthopedic surgeon next week for her arm. They'll x-ray again, too. She's doing pretty well... getting tired of the sling though, and frustrated more than anything. She very rarely complains of pain,.. mostly just about all the things she still can't do right now, but all in all she's been being a real trooper. Probably handling it a lot better than I would, LOL.

Thanks again to everyone for all of the prayers and the support. We are grateful for each & every one of you!!