Thursday, July 11, 2013

NF2 continues to be cruel to Jacob. As we head home from our appointment with the new neurosurgeon at NIH,my heart once again breaks for my child. The helpless feelings overwhelm me. What do you say to your child when they tell you, once again, that they wish they had cancer so they could either die or be healed, that God has abandoned them? I have no words. I remember the scripture of Jesus' crucifixion and Him calling out to Abba, asking why he had been forsakenIn no way am I comparing any of us to Jesus, but if Jesus could feel that way, then I understand how Jacob and I can feel that way.


It appears Jacob will add radio surgery to his list of trials in 2013. His MRI from yesterday showed growth in both vestibular schwannomasThe right side is still the greatest concern. According to the new NIH neurosurgeon, it has grown 2 mm in both directions. This means that our high hopes of lapatinib (chemo) buying Jacob time are crushed. Three chemotherapies in two years with next to no results.  Jacob has four choices:


1. Leave the tumor, live his life and it will slowly grow and eventually cause so much pressure on his brain stem he will die.


2. Wait and watch for symptoms, but it is already compressing his brain stem and the larger it gets, the more complicated the already-extremely-complex, 12-hour surgery becomes. The bigger the tumor gets, the morelikely his facial nerve becomes to being damaged in surgery.


3. Brain surgery. The benefits of surgery are that majority or all of the tumor will be gone and there's a chance of preserving Jacob's facial nerve. We've been told by the NF2 community that living with facial paralysis is much harder than living deaf. Facial paralysis complicates speech, eating and causes horrible dry eye. It is also cosmetically an issue in todays cruel society. A huge negative of surgery is the 100% that Jacob will lose all hearing in his right ear. With the left side growing, the possibility of Jacob being completely deaf in the near future is very high. There is also a lot of documentation that when one VS is removed, the other one seems to have accelerated growth. With Jacob having already lost his right eye completely, and because he has an optic nerve tumor in his left eye which has ready threatened his vision once, Jacobs hearing is so precious and important. I can't even wrap my mind around going to NY or LA to have anABI placed.


4. Radio surgery, aka radiation aka cyber knife. The doctor today mentioned fractioned and steriotic radiation,but Jacob has been offered radio surgery at ShandsThe dangers and benefits are all similar, the method of delivery is what sets them apart. The positives of radio surgery are no open incision, no bone removal, short recovery, 50% chance of hearing preservation and, if it works, the tumor could remain stable for 5-8 years. If it doesn't work and continues to grow, the radiated tumor,which has been altered, can make removal more difficult,and saving the facial nerve is harder. I guess a radiated tumor meshes with healthy tissues. It is also unknown what the effects of radiation are 50 years down the road.Jacobs young age is another reason the neurosurgeons shy away radiation. Swelling after radiation can also cause deafness.  


Jacob is strongly leaning towards radiation and we will have to do it soon. We've been told that Dr. Friedman atShands UF is one of the very best. Dr. Pincus also supports radiation. Dr. Pincus is the only neurosurgeon that I have ever spoken with that supports radiation for an NF2 VS.


Not having Dr. A today has me feeling very lost. Even if we wanted to do surgery, who would we see? A doctor atShands I don't know or this new doctor at NIHI don't have enough time or money to get Jacob to HEI or UVA.I was so hoping, maybe even counting on, that Jacob would finally respond to drug therapy.


We need a miracle.


This week I will send copies of Jacobs MRI to Dr.Brackmann at House Ear, Dr Smith, Dr Pincus and DrAsthagiri to get their opinions. In the meantime, Jacob and our family will begin to prepare mentally and emotionally for the coming storms.


Prayers welcomed!!! If it isn't God's plan to heal Jacob,then let our prayers be of strength and peace in whatever His plan is, and although I know there is no way for us to understand, I'd love the feeling of dread to be gone.  For him and for me.


  1. *HUGS* to you... You are one of the strongest ladies I know. I really admire you and your family. I hope that things work out somehow, there is not much I can do but send my positive thoughts. Hugs to you all!

  2. Ugh - so much to work through! Dr A will surely give you an opinion. Did you see Germanwala? Google him - he seems to be a really good surgeon from what I can tell. He's pioneered some minimally invasive surgeries, which must take some skill to do.

  3. HUGS to you (Jacobs & Family), from Malaysia... Syahidah