On Monday August 17th we drove from St. Pete to Gainesville for Jacob's MRI of the brain and eye orbit. This was the first MRI Jacob has ever had without anesthesia. It was at a different place than we usually go. It was at UF Radiology in the Medical Plaza instead of the UF Shands Hospital. I was worried because Jacob's MRIs are usually long and exhausting for all of us.
Where was our EASY button? Holy smokes something went the way it was supposed to go. We got there early and were taken right back. TD stayed in the back with Jacob for support. I was given the task of entertaining Maks and Brie, taking care of Gavin and walking Grissom and Connor (Maks and Brie were a big help). The scan only lasted 15 minutes longer than they said it would....45 mins instead of 30 and they got Jacob's IV in on the 1st try! Jacob said the contrast didn't hurt either. Which was really nice. For those of us who have had a CT before know how bad the contrast burns. Jacob said it was really hard to be still with his eyes closed for the scan, but the nurse said they got great pictures and that Jacob sat more still than most adults do. The only issue Jacob had was with the headphones. He said it was cool to have music to listen to, but they were too tight and started to hurt. They had to stop the scan for him to take them off. Jacob said the machine was really loud too. Not a big deal. With all this said it was definitely the easiest MRI Jacob has ever had...thank goodness. Jacob's dad and GG came too to support Jacob and be there for him also.
The MRI may have been easy, but the results have not been easy to swallow. The scan showed that Jacob does have a tumor/growth on his optic nerve in his left eye - his only eye. Dr. Robert Harbour called Friday morning and informed me that Jacob has either a meningioma or a glioma on his left optic nerve. It is more likely a meningioma, but he isn't sure. And why not I ask?? It was a rushed conversation and I was left, as always with more questions.
Meningiomas are common in NF2. Jacob has some in the brain already. This type of tumor is slow growing and usually are not malignant. Dr. Habrour said if it is a meningioma it has most likely been there since birth and just now gotten big enough to cause problems. We really didn't talk that much about what a glioma is, but it is the "worse" of the two types of tumors and grows very fast. He really feels like it is a meningioma.
Dr. Harbour recommended Jacob be seen by Radiation Therapy at the Cancer Center at UF Shands - a Dr. Robert Amdur. Jacob has an appointment this Thursday, August 27th. He isn't sure if radiation is an option, but surgery is not at this time. We will know more after Thursday.
Please, Please, Please keep Jacob in your prayers. Please pray for God to speak to me, to us and help us make the right decisions for Jacob's care. This is Jacob's only eye, his only way to see the world. We need to make the right choices for Jacob's future!