Two weeks ago, I made the trip up to UCLA for my follow up with Dr. Territo. All is well with my numbers, and she wanted me to start another course of ATRA (Vitamin A Chemo.) The last 14 days have been exhausting as I've been taking 3 different chemo meds. Not to mention theo painful dry skin and cracked lips that go with the high dose of Vitamin A. Thankfully, tomorrow is the last day!
A few days later, I had a follow up appointment with my Opthamololgist at Hoag. I was diagnosed with Glaucoma many years ago, and before my cancer the doctor checked my pressures every six months. Since the cancer, and the chemo, she sees me ever 4 months as chemo can sometimes affect the eyes in unwanted ways. What was supposed to be a quick check of my pressures, turned into a much longer visit when I told the doctor that I was seeing small "spinners" in the visual field of my left eye. Upon further examination, I confirmed that there is a small area in the visual field of my left eye that "spins" or doesn't actually focus. When I cover the left eye to check the right vision, the same area is black. Apparently, this was concerning to the doctor. Disturbance in the visual field of this kind can often indicate problems in the brain behind the optic nerve. The doctor believes this is simply some damage from my chemotherapy, but wants an MRI, and an exam with a "retina specialist" for further tests. Not sure there is anything to worry about, but I will keep you posted. Right now, I'm just considering it as a "better safe than sorry" thing that usually happens to me in my post cancer life.
The other trip to UCLA was for Jenelle. We traveled today to UCLA for her 6 month follow up with Dr. Shields. We told Dr. Shields that Jenelle's seizures were still the same, but had decreased in duration somewhat (i.e. instead of a 4 minute grand mal, they last for 2 minutes.) Dr. Shields agrees that Banzel could be helping, but wants to get her off the Vimpat before we fully asses its value. I started the Vimpat wean tonight, and it should take 8 weeks to finish.
I asked Dr. Shields if he felt Jenelle would be a good candidate for the Vagus Nerve Stimulator (VNS). He said it was something to consider, and he will present her case to the neurosurgeon at UCLA for his opinion. We'll hear from them later if they think Jenelle would be a good candidate. As for now, we will stick with the medications and their doses, except for the Vimpat wean.
And, we received a bit of sad news today. The wonderful class with the County of Orange where Jenelle has been a student for 2 years is going to be closed June 30. This is the 4th year that the County has had to cut classes. This means Jenelle will need to be transitioned into a new severe to moderate class for special needs students; and most likely at a new school. I spoke with the County Principal today, and indicated that I wanted to tour all of our options, including the County Program in Anaheim, the County Program in Irvine, and the Severe to Moderate Classes in Tustin. Two years ago, it was my belief that the Tustin program was not a good fit for Jenelle, however, their program has been in place now for 2 years, and of course, Jenelle has changed as well. I am keeping an open mind about all of the programs in our area, and hope the transition will be a smooth one.
That is all for now! Thanks for the continued prayers and positive thoughts. I'll keep you posted!