Tuesday, February 25, 2014

I received the call today from Dr. Ramakrishna's office that our insurance approved radiation in Orlando at UF Healthcare, which was MD Anderson. I don't know when they changed. 

This Friday we head back to Orlando. At 1:30 I will sign consents, at 2:30 Jacob will have his mask made, 3:30 we have check in at MRI over in Arnold Palmer Imaging and then at 4:30 Jacob will have the brain MRI to accompany the mask for radiation simulation. 

We will come home late Friday night. I can't bare another night away from TD and our kids. 

I did not ask how long simulation takes or the next steps. I did send an email asking for an update about starting Avastin. 

Thursday, February 20, 2014

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 promisingJacob says he can see the letters but then loses them. Itpossible 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.


Tuesday, February 18, 2014

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. 


Friday, February 14, 2014

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!