A week of Firsts....

Jacob and Brie started back to school. We all went and had breakfast together and talked (I cried) about how exciting it is to start a new year of school.



Both of them are now at Elizabeth Cobb Middle School. Brie is a 6th grader and Jacob moved up to 7th. On the 1st day Brie was really nervous, starting a new school and the Math and Science Magnet program. Jacob was glad not to be at the bottom of the food chain any longer.

The 1st day could of gone by without a hitch, but why would it? Jacob and I both ended up mad by 10:30 am. Jac got pulled from 1st period over a vaccination. This year it was required that all 7th graders have their Tdap vaccination (whooping cough, tetanus, and diphtheria). Jacob only had the tetanus part of the required shot because the whooping cough part of the vaccine is known to cause seizures. Since Jacob has a history of seizures and NF2 can be considered a seizure disorder our primary didn't want to give it to him. I discussed this with the nurse at Cobb this past May and was told everything was taken care of...so needless to say I was very upset that Jacob was pulled out of class, sent to the library like he had the plague, and I was called to "pick up my son." I spoke to the teachers in the media center, a person in the office and the nurse. By the time I got Gavin back out of bed and walked through the doors of Cobb, Jacob had been given his schedule and sent to class. I was assured everything was fine. It took me a while to cool down from that - like Jacob doesn't go through enough! Little things add up!


Anyway, after school on Monday I was so glad to hear they both like all of their teachers and seem happy with their classes.


It has been really nice to have them both at the same school only a mile down the road!! Gavin and I even walked to meet them when school was over Monday and Tuesday. A 2 mile walk in the afternoon feels great. Can't wait for the fall breeze.


Wish all I had to worry about was a vaccination and the weather. School has been really hard for Jacob adjusting to school with his vision loss.


I spoke with the vision teacher at Cobb on Tuesday and they are working on Jacob getting set up in the vision program. They were waiting on paper work from Shands. Being in the vision program will offer Jac large print books, talking books, and teach Braille. I will learn next week what other things they can offer to help Jacob. Like with his notes and worksheets and such. This week was hard for him regarding doing, reading, and writing his school work. The print in the books are too small, his worksheets print and numbers are too small and he has a hard time seeing the things he has written himself. TD reprinted a lot of Jacob's home work in font 28 to help him see it, so he could do some of it on his own. Brie, TD and I took turns reading him questions and helping him fill out papers. I guess we are going to have to go to key locks instead of combinations - those numbers are too small for him to see too. It's been rough for him.

I am waiting still on Division of Blind Services to finish his application and get him help through them.

Then there was Thursday...

It was another lovely day at Shands.

First let me say that I received an email from Dr. Amy Smith (a response from an email I sent her last Friday) really late last night. She stated in her email that her and Dr. Pincus are not convinced that what is showing up on or around the optic nerve is a tumor, based on the MRI from August 17th. Dr. Harbour is the one who stated it was a meningioma or a glioma. I sent the email to Dr. Smith asking why he didn't know for sure. Dr. Smith's email said she would like for Jacob to do a CT scan to get a better look at his optic nerve and the surrounding areas. It could be a tumor or another possibility is spinal fluid collection from something else. She wants to discuss Jacob having a spinal tap to check his spinal pressure. (I recently read about this on the NF2 Crew - elevated pressure in the spinal fluid can cause the optic nerve to swell causing problems with vision). I don't know how safe the spinal tap is with NF2- I haven't spoken to Dr. Smith yet.

So we got up and went on to Gainesville to met the radiation/radiotherapy doctor.

At 9:45 we met with Dr. Amdur at the Cancer Center and his 2 residents/fellows.

He said if it is a tumor then they can do radiation, but he isn't sure he would recommend it at this time. There are a lot of risks. (Better to wait)

He went over radiation options in the event that the CT does reveal a tumor.

The type of radiation they would do is photon RT. Shands Jacksonville (1 in 5 places in US) offers proton RT, which is the same radiation delivered by a different machine. Jacob could do either.


He discussed the risks.

• 50/50 that patients pituitary/hypothalamus get "screwed up" and will need some form of meds to help hormone imbalance.


• 1/4 that sight is improved at all


• 1/4 usually report no additional loss of sight


• 1/100 that patient will suffer memory issues (short term memory, thinking skills, etc)


• 1/1000 that radiation will cause complete blindness (Dr. Couldn't recall any)


• 1/100 that tumor will grow back years later or a new tumor will grow (cause new tumor growth)


• typical radiation treatments for this type is 2x a day for 5 weeks

Dr. Amdur called Dr. Smith before we left to see if she wanted to see us. She sent us to have a CT. After 2 hours of the CT staff trying to figure out the orders from Pincus and Smith, Jac got his IV in and had his 45 second CT scan.

Now we wait again for those findings.

On the bright side.....

I am very excited to say Jacob has been accepted into the NF2 study at NIH.
I received an email from the Neurosurgeon Dr. Asthagiri's Nurse Practitioner. She stated that they had received a letter from Dr. Amy Smith and Jacob's films and they were reviewed on August 20th. She said since that time, their offices had been moving and she has not had a chance to respond to me. However, she said Dr. Asthagiri is interested in seeing Jacob in the NF2 study. They are booking in Oct and Nov. They plan on Jacob getting an MRI scan, seeing the eye doctor and ENT doctor as well as doing audiology and vestibular testing, blood work and seeing the pediatric oncologist. She said the MRI scans are the hardest to book and depending on the availability it could take several weeks. She still needs to register Jacob so I hope to hear from her soon.

I am holding onto hope that this group of doctors at the NIH who take care of many NF2 patients will have more answers and be able to help Jacob.

So Jacob and Brie weren't the only ones who were busy this week. Gavin started eating cereal this past Sunday and he loves it!! By Wednesday night he was opening his mouth when he sees the spoon coming and he is learning to keep his hands out of the way. It is really cute and less messy than I remember, but I bet there is plenty of mess to come. Gavin also cut his 1st tooth. Ouch. This little bottom tooth is so sharp and is making him drool and chew on everything...like a little boxer. :) There are only a mouthful more to come. Bring em on - we're ready.

Glad it's Friday. We are ready for the weekend. Jacob and Brie are excited they are going to their favorite cousin's house and I am thrilled to have TD home with me a few days that don't include doctors appointments.

Our week of Brie's 1st day of middle school, Jacob's 1st day of 7th grade, Jacob's 1st trip to the radiation therapy doctor, G's first taste of cereal and G's 1st tooth is winding down.


What's next???