Jacob's June 2010 Trip to the National Institute of Health (NIH)

Jacob's June 2010 Trip to the National Institute of Health (NIH)

As most of you know Jacob and I just spent the last week at NIH. We traveled up there for his second semi-annual visit. This trip was for a brain, spine and brachial plexus MRI, Radiology Speech and Swallow testing, blood work and an appointment with Jacob's Neurosurgeon, Dr. Ashok Asthagiri (Dr. A).

I am only going to write about Jacob's testing and the consultation with Dr. A in fear if I try and write about the rest of the trip, this will never get written. I will quickly say, however, that our flights were fine, but I prefer Delta over US Airways. Both boys did great on the planes, buses and subway trains. Our trip to the National Zoo was awesome, but extremely hot. And our stay at the NIH Children's Inn was very nice, as always.

Tuesday morning was the 1st time Jacob has done a full brain and full spine MRI without any anesthesia. I was so super proud of him! He only asked to get up once during the nearly 3 hour imaging. Jacob got his IV right after having blood drawn in the Phlebotomy lab and it took two tries in the same vein to get it placed. He didn't complain and handled it like a champ. Thursday morning he had an IV placed and brachial plexus MRI done all by himself. He went back into Radiology alone and said he didn't need me to come back and told me,"it's alright, I'll be fine." Jacob is so brave and grown up!

Jacob suffered some brief moments of speech loss a few months ago so Dr. A thought it would be good to have a baseline of Jacob’s speech and swallow functions for the future. Jacob hadn’t done the Speech and Swallow testing before and we were very thankful that it was not invasive. He drank juice, ate pudding and ate a cookie, one at a time. They took pictures during each and Gavin and I watched on the screen. Jacob got to watch too on a monitor right in front of him. The images were really neat. It reminded me of a Halloween movie! You could see Jacob's skeleton and the product he was eating or drinking pass through his throat, down past his heart and into his tummy. Jacob's swallow results were normal, but his speech results showed some slight atrophy in his tongue, most likely from one of the tumors in his neck. So, as always, we were given good news, but also bad news.

Our last appointment was on Thursday morning with Dr. A to go over the MRIs that Jacob had done this trip. Dr A compared them to the MRIs from the previous trip in December 2009. The good news was that the ependymoma (tumor inside the spinal cord) at the base of Jacob's brain stem has not really grown or changed in the last 6 months. Also the very long meningioma tumor growing near the middle of Jacob spine has not really changed, and although it is touching Jacob's spinal cord, it is not pressing on it - the spinal fluid is still able to flow through. (Thank you, GOD!! and Mrs. Bunny!!!) The other good news is that the left side Vestibular Schwannoma (Acoustic Neuroma or ear tumor) has not changed or grown at all and the schwannoma in Jacob's c-spine that has 3 parts and is branching out on both sides of Jacob's spinal nerves is still only pressing on the left side of the cord and has only grown a small amount.

These above are our answered prayers.

The bad news (which it seems we cannot escape from) is that the right side Vestibular Schwannoma (Acoustic Neuroma or ear tumor) has grown from 19 mm to 24 mm over the last 6 months. It is a blessing that it has not interrupted Jacob's hearing. Jacob’s audiogram and ABR testing, done here in Tallahassee in May, was within normal limits. The ABR did show on the right side where the signal (sound) is taking a bit longer to reach his brain than on the left. Dr. A discussed with us possible surgery with him at NIH and we talked about CI and ABI implants done at HEI in California. We also talked about protecting Jacob's balance and facial nerve and how big the tumor can get before it damages those nerves also. We are going to continue to watch it for now to allow Jacob to have hearing as long as possible on that side.

The other bad news was that there is another ependymoma (tumor inside the spinal cord) growing under the one at the base of the brain stem. It is seen on his other scans, but has not been growing considerable until now. They will be watching it as well.

We also discussed the continued loss of strength and use of Jacob's right hand. Dr. A said he reviewed the films of the brachial plexus, but they had not been read by the radiologist yet. He said he still did not see a way they could safely remove any of the tumors in that area - the brachial plexus is like a field of nerves all entangle in each other and there is not one large tumor that they see that could be causing the problem, but several that stretch across the field.

Jacob's optic nerve tumor was not discussed since Jacob's vision has not appeared to have changed over the last 6 months and is too hard to see on MRI.

We will return to NIH in 6 months for another set of MRIs. He will also have his eye, balance and hearing tests and appointments. We have appointments at Shands in July to have the scans at NIH reviewed by his doctors there to keep them in the loop and we will also be seeing Jacob's new eye doctor there in 2 weeks. Wish us luck!

Thank you for reading and please, please keep Jacob in your prayers