Jacob and I are home. We returned to Tallahassee around 7:00 pm last night.  Waking at 5:00 am to clean the room,driving from Orlando to Gainesville, spending four hours in eye clinic, grabbing a quick lunch and then spending another four hours at the Oculist makes for a long day.

 

I'm headed to Leon to see my beautiful Brie dance in the Black History Month assembly, so this will be short :).  Eye clinic with our neuro ophthalmologist, Dr. HazemSamy, is always worth the wait, no matter how dreadful it seems at the time. In the first few hours of our clinic time,Jacob had a vision screening, had photos taken of his optic nerve and completed his Goldman's fielding vision test.  All of this activity is done to monitor his left, and only, eye. The good news is that the nerve fibers on the photo haven't changed since both January and August of 2013 and the field of vision tests are the same.  The bad news is Jacob has suffered some vision loss since August.Since his decompression in 2009, his vision has changed from 20/50 in 2011 to 20/60 in 2012 and to 20/70 in 2013. Yesterday, it was 20/80 with no changes in appearance.Dr. Samy had Jacob redo his vision test with him and gave Jacob a long time to "scan and find" the letters.There were a few letters that Jacob read at 20/70, so that was promising. Jacob says he can see the letters but then loses them. It’s possible that the combination of the loss of his right balance nerve and the vestibular schwannomaon the left are affecting his vision.  Dr. Samy wants Jacob to return in four months to retake the tests and if there are any other changes, he will order an MRI at Shands of the orbit area. The fear is that when optic nerve tumors likethe ones Jacob has start to change, the vision is what changes first, before the other tests pick up the changes.  So we wait.

 

We also talked about radiation at the University of Pittsburgh if the tumor starts to change. Dr. Samy said he’s sent two patients to Shands UF in Jacksonville for proton radiation with stable results (so far), but he isn't as confident in it as he’d like to be yet. Hoping he will be by the time Jacob needs it, if in fact he does. I continue topray that Jacob never needs it!

 

The appointment at Guzman's Ocular went well.  They created a mold for a new prosthetic and started some of the lens coloring.  She worked on it for the entirety of the four hours we were there. It's a very impressive and laborious process. We will go back for more art work in a few weeks.

 

That's all for now.

 

Thank you all for your prayers and support. I'm trying to keep my head above water as I'm feeling less optimistic.My two hours of sobbing on the way home last night(while Jacob slept) may have helped slightly. I'm sure a few days back at home, prayer and a lot of love will make it easier to be ready to face what's next.

 

Quick summary-

Jacob and I are done with our consult with radiation oncology. 

We both liked Dr. Ramakrishna

very much. He took a lot of time with us and seems very smart and kind. 

He is ordering a more precise MRI and an appt to create a thermoplastic mask for Jacob. Both of these will be used to do radiation simulation. We won't know which radiation approach will be used, fractioned or one shot radio surgery until after the simulation is done. Dr. Ramakrishna seems very thorough and he does believe Jacob's right facial schwanomma can be treated with radiation. He will go over the risks more thoroughly after he has all the information and decides which type of radiation is best. There will be a risk to the facial nerve but we don't know how high that risk could be yet. 

Radio surgery aka cyber knife is a one shot deal and fractioned aka stereotactic is five treatments a week for five weeks. Jacob will be treated either way in Orlando. 

We also discussed Jacob starting Avastin. Dr. Ramakrishna will work with Dr. Smith on that. 

So now we wait for tests and pray on more hard decisions. 

Tomorrow Jacob has eye appointments at Shands, so there's that too. 

Here's a link I found that simplifies the planning stages. 

http://www.mayoclinic.org/condition/cancer/multimedia/radiation-therapy/SLS-20076358?s=1

Recent Results

I had hoped and prayed my next blog post could simply state, "Stable Results," but, unfortunately, that doesn't seem to be the case. I'm also writing this without all of the information, so if there are unanswered questions, just know that I am most likely wondering the same things. I was waiting to post until I heard from Dr. A, but since there's a hold up with that, I'm going to report with our preliminary findings. This is what we know. 

Jacob had surgery on his right vestibular schwanomma on October 29, 2013. During resection of the tumor, the surgeons removed Jacob's right hearing nerve and right balance nerve. A portion of the tumors was left to preserve his facial nerve function. Directly after surgery, the doctors believed they left about 2% of the tumor attached to the facial nerve. Given that the goal of the resection was to remove as much as possible without disrupting the facial nerve, the surgery was a success.

Jacob had a post-op MRI of his brain on recovery day 1. I saw the images. He gave Jacob a print out of the before and after images. I wouldn't call my initial reaction disappointment given that the surgery went so well and I was so thankful that they saved Jacob’s facial function, but I remember wishing they had removed more. He did have some mild facial weakness, and at that time we did not know if he would regain 100% function of the right side of his face. I had the thought that if he wasn’t going to fully recover, at least I could rest knowing they removed as much as possible. I can say now I’m glad he recovered fully.

Looking at the post op MRI I can remember a view where you couldn't even see the tumor, and when the image moved down, it looked similar to a thick crescent moon. Dr. A did say after the MRI review that 10-15% was a more accurate assessment of how much of the tumor was left. After 15 hours of surgery, I was just thankful that it was no longer the almost- 4cm brain tumor compressing Jacob's brainstem, and that Jacob was alive and doing well. Dr. A provided that photo mentioned above to Jacob with the before-and-after images side-by-side and very clear. You can see both the right and left VS’s in the side-by-side shots. The right side VS at that point, post-op day 1, was considerably smaller than the left VS. 

We knew going in to the surgery that there was a 60% chance of re-growth even if the entire nerve was removed. It's one of the reasons doctors don't think sacrificing the facial nerve is necessary. We knew it could grow back. 

Fast forward almost exactly 3 months, Jacob had an MRI at home in Tallahassee on January 27, 2014. I received copies of the images, burnt them on CDs and sent them to Dr. A, Dr. Brackmann and Dr. Pincus. I sent emails informing each of the doctors that the scans were coming. 

This past Monday, I went to Radiology and Associates and picked up a copy of the written reading of the MRI. There was mention of Jacob's spinal cord bulging at C1 and notes of changes in a huge, 7 cm para-spinal tumor Jacob has in his lower back. Both concerning, but neither as shocking as the measurements of his right VS. His left side had very slight changes (Thank you, Lord!), but his right side was measuring, at its largest length, 2.6 cm. I tried not to be alarmed. I imagined that it could be scar tissue, or maybe that it was the measurement of where the tumor is elongated onto the facial nerve. 

The next day, we went to see our neuro oncologist in Orlando, Dr. Smith, with scans in hand. Jacob sees her at least every six months, regardless of whether he's in treatment. We had intentions of talking with her about drug therapies for hearing preservation for Jacob's left ear. She did her exam and looked at Jacob's scans. I looked at Jacob's scans. I was very sad to see the right VS was now, once again, larger than the left. It had grown back to a rather large size in just a few months. Obviously, I'm not a doctor and I don't have skills in measuring volumetric tumor sizes, but by eyeballing the scans, I can say with near certainty that the right VS has at least doubled in size over the last 3 months. 

The NF2 community is telling me that this can't be right... I'm hoping very much that I am wrong. I remember in Summer 2011 we asked our medical team to look at a tumor that had not been scanned for several years near Jacob's adrenal gland. It was 5 mm when they first found it, years early. That Summer’s CT scan showed it had grown to be 5 cm. We decided to have it removed. Five months later, Jacob had a pre-op CT the day before surgery. The adrenal gland bed mass had doubled in size and was over 11 cm. Five months. It was also verified to be a schwannoma. Just saying. 

So, back to Tuesday. Our neuro-oncologist feels like Jacob should see a radiation oncologist. Starting a cycle of Avastin (chemo) is also in the plan to support possible radiation and maintain hearing. Jacob has an appointment in Orlando this coming Tuesday to meet with the radiation oncologist to see what, if anything, he can offer. The post-op scans from UVA are being sent to Dr. Smith and the new scans have been sent to Dr. A. I am waiting not- so-patiently to hear from them, and, hopefully, Dr. Brackmann, soon, too. I haven't even asked about the spine yet. 

That's all I have for now. Heavy hearts and occupied minds at our house this week. 

I do want to wish all of you a very Happy Valentine’s Day! Hallmark holiday or not, everyone could use a little reminder of how much they are loved! May all of your lives be filled with love!

Tammy

Hello, world.  It's been 10 weeks since Jacob's brain tumor resection and I'm happy to say that things have been quiet in our medical world.  A much welcomed peace.  I wish so badly that it could last Jacob's lifetime, but we know that won't be the case. Jacob returned to school and is back to most of his normal routine and activities.  He's adjusting the best he can.  He gets easily confused and frustrated with multiple sources of noise and voices.  He has lost his sense of place in his surroundings, but it is what it is and he's doing amazingly well with what he's been given.  Jacob has very little facial weakness and regained most of the feeling that he lost during surgery.  He claims the odd tastes are going away as well.  He continues to heal.

As Jacob sits at his desk trying to catch up on missed school work, I sit at mine trying to straighten out all the things to come.  With Jacob coming home with tales of almost falling or full-on wrecking himself daily, it's time for him to return to physical therapy.  Jacob's right side blindness and missing right balance and hearing nerves combined with the multiple spinal surgeries, poor balance is expected, but hopefully with hard work it will improve.  Jacob's six month full brain and spine MRIs are scheduled for the last week in January, followed by a clinic appointment with our pediatric neuro-oncologist at Arnold Palmer in Orlando the second week in February.  In this appointment, we will review the MRI findings and discuss any more chemotherapy options to control the growth of the myriad of other tumors Jacob has.  Jacob is particularly worried about his left vestibular schwannoma (VS).  It’s around 2 cm and it’s very common in NF2 to see rapid growth after one of the VS’s is removed (which is the surgery Jacob had in October).  Jacob's left side is now his only functioning hearing and we know that the left facial nerve has it's own tumor as well.  Radiation is an option, but with a 50/50 chance of hearing loss after radiation, we hope that a drug therapy will finally grant some reprieve.  Jacob has also asked for a new prosthetic eye, so we’ll be heading to Gainesville soon to start that process.

As always, please continue to pray for Jacob and for guidance and hope in the next chapter of his journey.

Oh, and most importantly, I hope all of you are doing well and each of you had a very Merry Christmas and Happy New Years!  It was a thankful and humbling season for our family for sure. I'm still in awe of the love and support we received during this last storm.  I will be forever grateful. Thank you all.

Sincerely,

Tammy

I'm so happy to share that Jacob and I are at home!!
Jacob is amazing and recovering so well.  He looks and feels good.  We've gone for walks, he's played video games with the boys, he's enjoyed visitors and he's up and awake for all of the day. Today TD took some time off work to be with Jacob and they went on a short walk around Tom Brown pond and Jacob went with me to pick up Gavin from KKP.  Our weather has been beautiful!
Jacob is still adjusting to the numbness in his right cheek, talking, drinking and eating.  He is working on that with daily exercises.  Yes! You can exercise your face :)  His balance is improving and the drops are helping with the dry eye.  If you don't blink your eye dries out.  Never thought of that.  Friday will be another milestone.  Jacob's stitches and staples will come out.  I will be taking Jacob to Dr. Rosenberg's office at Southeastern Plastic Surgery to have the stitches from his head and back removed and the staples from his abdomen taken out.  Jacob says he's ready.
Once again I can't express enough how thankful I am for everyone's support and prayers.  I am in awe of the out pour of help we received.  God is good and we are so loved and GRATEFUL!!!
 

These photos should be hard for you to look at. NF2 robs our loved of the things we take for granted like hearing, seeing, eating without struggle, walking, smiling, and the use of their arms and legs. I'm sharing these photos to once again to show what Jacob has endured.

The good news we are headed home!!!

Jacob has had a great day! 

Most of you have seen his video and can see he's got some good movement on the right side of his face. 

Today he took two walks down the hall with a walker. The second stroll was tripple as far as the first. He does stop and close his eyes randomly to control the dizziness. Jacob had his lunch sitting up in a chair and is eating well. We've been released from PICU but since the Peds floor is full we are staying put. It's not a bad deal. We are in a private room with a beautiful view and on the floor schedule. That means no more neuro checks every hour and he's off the monitors. He's down to one IV and it's his port access. Wound care doctors came and looked at his bum. The spot of pain is a bruise. It responded well to pressure, turning white under the red means the cells under the skin are alive and a blister should not form. Dr. said it should feel better soon. Jacob continues to have 15 ccs of spinal fluid drained every 2 hours. He went most of the day pain free but has a bad headache now and is going to bed. He's been switched to oral pain meds. The dressing on his abdomen incision was changed and they kept the drain in. Jacob's been on the phone and in good spirits. Dr. A was happy with his progress. Oh & I love our nurse, lol. Sorry for the complaining this morning!

I had a nice quick lunch with lovely woman named Mary today from the UMC here and now Im hoping to get a nap. 

Happy Halloween everyone!! I hope you have a lot of fun tonight.