On Jan 1, 2013 we were in the kitchen and my husband was looking at Taylor and all of a sudden he notices her eye acting all weird. He calls me over and it was like she had a lazy eye thing going on. It was really obvious. We kept watching it and it did not do it all the time and when it would do it it would just be a little bit and you would have to catch it just right to notice it. It freaked us out though, because the day before she had just ran into her ladder on her bunk bead causing a huge bump on her forehead. After some research I figured it was not related to that at all. I know with her having NF1 that we need to keep an eye on her eyes, because of the chance for the optic gliomas. So I started wondering if that was what was going on.
So, the next day we took her to the pediatrician and she immediately said we should go see her ophthalmologist We got an appt for the following week. He confirmed the problem we were seeing with her eye and said that he believes a growth from NF is the issue and she needed to have an MRI to get a better look. He said we were smart to being her in.
He wanted to get an MRI in the next 24-48 hours, however due to some miscommunication, it was 5 days later, Jan 14 that she finally got it. The MRI went well and while we were still in the recovery room, the ophth called and said he read her results and confirmed the presence of the optic glioma. He said another doctor would be calling to schedule us to work on treating it. It was a fast call because I was in a whirlwind int he middle of helping my daughter, with 3 other kids in tow and my cell phone about to die. So I did not get very much info during that call other than that. I did not know how big it was, how bad it was, where exactly on the nerve it was, etc... These tumors can range from never being an issue, to being an issue right away and needing treatment.
The next day nobody called... so I emailed the geneticist to inform her of the diagnosis and see if she was in the loop. She emailed back the next day saying she would talk to the eye doctor. During this time, I posted on FB about what was going on and a friend from high school mentioned to me that she works with NF kids and explained the process of what happens with these tumors in treatment. She mentioned that when the tumors are bad they use chemo since they can't do surgery or radiation and that chemo works really well in these tumors and NF kids. I was like Chemo??????? I started doing a bunch more research... and prayed that wasn't the case for Taylor.
The geneticist called me that night and said that it was a neuro oncologist who would be calling to set up an appt for us with him. I am thinking, oncologist??? Does that mean things are bad??? So, Wed Jan 16, the pediatric neuro oncologist called me to inform us that her tumor is in a place that is causing problems with her vision and seems to be agressive and they recommend treatment with chemo right away. Um, excuse me? Did I hear that right? He was really nice and we talked on the phone for a while about it all and we scheduled an appt to see him on the 23rd (today). He said he would want to start the chemo the next week. Smack in the face! Whirlwhind! Is this for real? I did more and more research after this call.
Today's appt filled in a lot fo the gaps of info we were looking for concerning Taylor's tumor and her care. We got to see the MRI and see the tumor. It looked huge!!! She had an eye exam 8 months ago and the ophth was not concerned about anything. Now, here we are and it seems to be taking up the entire right optic pathway. It is not in the chiasm which connects the left and right eye nerves, thank God, but it is close and it is unknown if the tumor is growing towards it or not. They are guessing it is agressive and if left untreated, Taylor could go blind in her right eye and if the tumor were to grow into that chiasm, she could go blind in both. They don't think we should wait a few months and watch it, they believe it is already to the point of necessity for treatment. We have already been noticing her eye weirdness more and more, like it is getting worse since the beginning of the year. They can not remove the tumor due to its location in the brain. They would have to remove her eye to get it out. The best course of action in these cases is Chemo to try to stop the growth and preserve her eyesight as much as possible. NF kids respond really well to this chemo.
So, she is set to start the process of treatment next week. Mon we will spend in the hospital getting surgery for her port a cath to be put in her chest (this is used instead of always having to have in IV). Tues we will spend at the hospital getting kidney tests and hearing tests (to mark a baseline to know if the chemo is affecting these areas in a negative way) and Wed, HER 4TH BIRTHDAY, she will start chemo. Happy birthday, Taylor... you have an inoperable brain tumor and you need to start a weekly dose of poison for the next year... SUCK, I know... but oh well... it is better than going blind. Anyway, back to the treatment... It is a low dose out-patient chemo that will be once a week for 10 weeks on 2 weeks off, then 4 wks on 2 wks off for like 8 cycles. So around a year or so of treatment.
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