Finally, I am here for a real update.
Preston has been having his usual annual round of appointments lately, and those included an MRI, pediatric ophtholomogist, and today the oncologist. The MRI looked pretty stable with exception to his plexiform neurofibroma (in his left cheek/jaw/ear). There was some growth noted, but nothing will be done about it unless it becomes problemsome. The Dr today did say that the plexi does surround one of the main arteries (the carotid according to the MRI report), but that it is not putting any pressure on it at this time. The eye exam revealed that Preston has lost 20 feet of vision in his left eye (the one with the optic nerve glioma) in the last 6 months. A new perscription was given & filled and we go for a re-check in 6 more weeks. We learned today, that depending on the exam in 6 weeks, he may be sent for another MRI and that it could be time to stop "watching and waiting", and it may be time for chemo. According to the oncologist, MRI's often show stability when there has been tumor related vision loss - the MRI's tend to lag a bit behind, and that would be the reason for the follow-up MRI in 6 weeks. I will be calling her as soon as our ophth appt is done and we will go from there. Please, please pray with us that we will not have to go down the chemo road as many of our friends in this same position have. There is comfort in knowing that others have had good outcomes, but it is still a scary and un-easy road to explore.
One good thing is that the ophth noted that there was not a color change in the optic nerve. Typically, the nerve would show some paleness/ greyness as the tumor progressed, and it still looked to him as it has in the past. The bad part is that he could not tell me confidently that this was "normal" vision loss, and not tumor related.
Thanks for checking in on us. We appreciate your prayers!
TARA
