NIH Trip Jan 2-7, 2011 (IV)

Thursday, January 6, 2011

Day 5: Phlebotomy Lab and Neurosurgery

I'm not even sure I would be writing this blog tonight, I would have probably waited a few days to compose myself before relaying this information to all of you, but this blog is the only way I have to communicate with Jacob's father....

On February 25, 2000 Jacob had his first grand mal seizure. He was 3.5 years old. He had gone through several eye surgeries prior to this day, but the day of his first seizure was the day our world changed. Unfortunately I remember it like it was yesterday. It plays over and over in my head like a bad dream I am unable to forget. I remember the moment, the following day after many scans and tests, that Dr. Truman informed us Jacob had brain tumors, brain lesions, abnormalities. I remember how I felt and the fear that overcame me. I have thought about that day a lot this week, as the 11 year anniversary approaches. I have thought about how strong and amazing Jacob has been over these years and how very special he is to us. I never imagined 11 years later this is where we would be, I guess I was too afraid to look to far into the future, but I knew we would fight it all the way.

Today, I felt like I did 11 years ago when they told me that my precious son had brain tumors. Completely devastated and fearful of what tomorrow will bring. Like our life and world as we know it is about to change, again. Today was a lot to take in at once, a lot to process and once again, imagine.

This is what was discussed with Jacob's neurosurgeon, Dr Asthagiri at today's appointment, as best as I can recall and understand. I will have a better grasp on what we talked about when I receive the clinic notes and dictation from today.

Dr. A did not want to talk measurements and sizes with me today. He said it wasn't necessary, that it was useless information for me to worry myself with.

The very first thing Dr. A wanted to discuss with Jacob and me was why he did the CT of Jacob's brain this visit.  He wanted to view the changes in the unknown lesion, tumor in Jacob's right frontal lobe.  It does have calcifications, which we already knew because we were told that in 2000.  Dr. A is concerned as to what the tumor really is and how it may be effecting Jacob.  It has changed and grown over the last 10 years.  The way he explained it to me was if this tumor was seen on a scan for one of us (in the room) it would be a cause for alarm.  He said because it is not clear as to what the tumor is he does not want to just assume because Jacob has NF2 that it is a begin tumor, especially with the changes it is showing.  I do not understand what these changes are or think that it was important for me to understand.  I did understand that he doesn't want to jump to conclusions, but he doesn't want to assume it couldn't be harmful either.  He has requested that Jacob see a neurologist at Shands and have an EEG performed.  We discussed episodes of mumbling and eye twitching that Jacob has been experiencing over the last 8 months.  We also talked about them last visit.  They have not gone away and he believes that their is a high chance that Jacob is having seizures.  The EEG should show if there is abnormal activity in that area or any other area of Jacob's brain.  I also informed him that many years ago Jacob had a nuclear medicine scan (I can't remember the name) for the tumor in question, in the right frontal lobe looking for activity.  The purpose of the test was to help show whether the tumor was cancerous or not.  Jacob's doctors have been curious as to what it is all along.  Dr. A said there are a few different scans like that they can do for Jacob that will give us that information.  We will wait to have those ordered until after we get the results of the EEG.  There will be a basic EEG done and the neurologist will then decide if a more detailed EEG needs to be done. I will find out exactly what test Jacob had previously so the results can be compared. The tumor is close to the surface and surgery to remove it would not be without serious risk, but if surgery is necessary it is in a good place (if that is possible).

The next thing we discussed was a schwannoma at the C-7 (nerve 8) in Jacob's cervical spine that they have been watching very closely.  It has grown a considerable amount over the last 6 months and is now pressing on Jacob's spinal cord.  Dr. A is extremely concerned about this tumor because it is in a place to damage Jacob's left hand and arm, his only hand that really is well working.  If the tumor continues to grow it will have to be removed to protect the use of his legs and even the surgery could damage the left hand.  Dr. A has requested that we have another MRI of the brain and spine at Shands to monitor the growth of the unknown brain lesion and this schwannoma and the bilateral vestibular schwannomas.They are surprised that Jacob is not having any weakness, problems or pain with the left hand or arm.

Next Dr. A told us that the right vestibular schwannoma is growing and has grown several mm over the last 6 months.  He said it is in fact now touching the brain stem and if it doesn't stop growing it will have to be taken out in the very near future.  He also said that the VS is at the size now where if surgery was done now Jacob's right facial nerve could be saved, but the surgery would definitely take Jacob's hearing on the right side.  If the facial nerve is damaged it effects a persons ability to smile, talk and eat.  It is impossible to predict what any of these tumors are going to do, when they will grow or stop growing. The balance nerve is always cut during a removal surgery of a VS.  Balance is usually restored a few days after surgery.

The left VS has also grown some, but is not as big as the right.  He also said the left facial nerve tumor has grown.  He said that the facial nerve tumor is at a good size to be removed and some doctors may recommend having the facial nerve tumor removed to save the facial nerve and may tell us the chance of hearing loss is only 20 or 30 percent, but he does not agree with this and feels like a surgery like this for Jacob would leave Jacob with a 50 or 60 percent chance of losing his hearing if they went in to remove the facial nerve. He does not recommend anything be done at this time for the left VS other than just watch it.  

We went on to talk about the 2 ependymomas inside Jacob's upper cervical spine, inside the spinal cord, one of them at the base of the brain stem.  The good news is that the eppy at the base of the brain stem that doubled in size over the last year and a half that we have been terrified over has not grown over the last 6 months and seems to be stable.  The bad news is that the one under it that showed up last MRI in June of 2010 has doubled in size over the last 6 months.  That one also will have to be removed if it doesn't stop growing.  Dr. A did say the spinal cord still has room on the sides for the fluid to flow through.  These will also be imaged in 3 months on the MRI at Shands. We hope it will stop growing after this spurt like the other one has stopped.

Dr. Asthagari then went into details about how the surgeries would be preformed and the recovery time.  We talked about the risks and the many ifs, maybes, and possibilities.  We also talked about chemotherapy.  He gave me information about different places doing protocols for NF2.  He said there is no drug that has proven to work on any of the types of tumors Jacob has.  He is not against Jacob having chemotherapy, but he made it very clear not to wait until something starts to go wrong to get Jacob into it.  It will be too late then and he will have to have surgery either way.  We talked more about the different drugs, but until I do more research I won't ramble on about that.      

This is all the information I can share at this time.  I am exhausted, overwhelmed and my emotions are drained.

Please continue to pray for our precious Jacob.  He needs Gods hands on him to heal him more than ever.