Tuesday, August 27, 2013

Jacob August Update 2013

August Update for Jacob:

Sadly, I've spent a lot of time on Caring Bridge the past few days. Sweet little Grayson is battling an aggressive leukemia and beautiful McKinnon is undergoing a 12 hour brain surgery today.  Several other children I follow have had MRIs and test results this week and I am thankful that they received good news.  Reading my emails this morning, my dear friend Laura's daughter, Ali, in Chicago, is having spinal surgery this Friday thanks to a nasty NF2 tumor.

My head is spinning, but I feel the need to suck it up and write an update for my Jacob.

In very few, and considering the circumstances, Jacob is really doing well. Over the past several months of triathlon training, TD and I dragged the kids along with us to swim, bike and run, Jacob included. Last week he swam several laps in the pool, rode TD's bike for a mile and did a five mile walk-run with us.  I've been so happy to see him so active.  Jacob even willingly went hiking TWICE with his teacher, Mr. Vogt. He hasn't loved hiking in many years because of how difficult it had become for him and he had so much fun getting back on the trails.  Jacob had an amazing week at Camp Boggy Creek (which, if you've spoken to him in the past few weeks, you should already know since he LOVES to talk about it!).  It was a bittersweet last trip to CBC. I am so grateful for everyone who makes CBC work. The pure joy it brings to these kids who have battled cancer and other types of life-threatening diseases and disorders is awe-inspiring.  The week after CBC, we celebrated Jacob's 17th birthday in St. Pete with family, a trip to Busch Gardens and a beautiful day at the beach.  I love St. Pete beaches.  School started back on Monday and things feel somewhat normal in our house.  Jacob's 11th grade year is in full swing, Boy Scouts have started back up and he returned to OT and PT.  That will all change soon.

I broke the devastating news to Jacob when he returned from camp.  Seeing how crushed he was that his right vestibular schwannoma couldn't be treated with radio surgery broke my heart, again.  Jacob's initial reaction was that he was not having any more surgeries and he was keeping his hearing in that ear.  I left him alone for a little over a week without saying anything else.  I decided that at Jacob's age it should be his choice until it becomes life-threatening.  We've never forced Jacob to do anything surgically.  Even when the doctors recommended Jacob have his right eye removed, we waited years until Jacob said he was ready.  After our trip to St. Pete, we made our way home through Orlando and Gainesville for doctors appointments.

We met with Jacob's neuro-oncologist at Arnold Palmer to decide if Jacob should continue on the daily chemo he's been on for the last 10 months.  Dr. Smith reviewed the scans from NIH in July.  Because Jacob's brain and spinal tumors have continued to grow, Jacob was taken off of the Tykerb (Lapatinib).  This visit was very sad.  Lapanitib was the third and last drug therapy being used for NF2 patients at this time. Jacob had no results from Avastin or RAD001.  Our hopes of a chemo shrinking Jacob's tumors are now dead.  No one knows why some NF2 patients have results with these drugs and some don't, but I am happy we had the chance to try and was able to have hope for so long. While we were there, Dr. Smith showed Jacob his images and the comparison from the last two years.  She showed Jacob the compression on the brain stem and ventricle from his right VS.  We talked about the risks of waiting to have the already-golf-ball-sized brain tumor removed and the risk of the surgery at any time.  After spending the night in Orlando, we made our last stop before heading home in Gainesville for an appointment with Jacob's neuro-ophthalmologist.  Jacob completed vision screaming, a vision field test, optic nerve photos and an exam with Dr. Samy. Even though Jacob's vision has lost a line, one of these "A E K L SD" lines, since January, his Goldman's screening and photos look practically the same. The exam didn't show anything alarming so Jacob's vision is classified now as 20/60.  I'm having flashbacks from 2009 when Jacob's January appointment showed nothing alarming and within 6 months Jacob's vision went from 20/30 to 20/200 and no one knew why.  Hoping now since his doctors know he has an optic nerve meningioma, they know what to look for if it changes.  Praying for stability in that tumor as it could easily leave Jacob completely blind.

Deep breath.

After Jacob's visit with Dr. Smith, I revisited the option of having surgery with Jacob. We have high hopes of saving Jacob's facial nerve and any reducing the risk of facial paralysis. There are also swallowing and other important functions that are in more danger the larger the tumor grows.  There was a lot of discussion as to where the surgery should be and with which doctor.  I will spare you the details of the phone conversations and insurance issues.  Jacob will be having the 12 hour brain surgery at Shands UF with Dr. Pincus and Dr. Friedman.  Jacob asked if we could wait until October.  He is beyond excited about a concert here in Tallahassee he is going to in September. The staff at Shands is coordinating the surgery date now and I will let everyone know as soon as I am notified when it will be.

Today I ask for prayers for Grayson and his family, and for Laura and Tracy and their beautiful daughters, Ali and McKinnon.

As always, thank you for reading.  

Thursday, August 8, 2013

Dear Team Jacob G,

I was going to share my notes from recent weeks, but ultimately they don't really matter.  The back-and-forth with doctors, waiting for them to receive and review Jacob's scans, is irrelevant today.  
I finally spoke with Dr. Pincus, Jacob's neurosurgeon at Shands UF, and he informed me that after reviewing Jacob's most recent scan from NIH in June, he and Dr. Friedman agree that Jacob is no longer a candidate for radio surgery.  The tumor has "changed" too much since January.  We were aware that it had grown 2mm in each direction since January, but never thought a few millimeters would make or break this decision.  We had faith that one of the three drugs being used to treat NF2 tumors would help stunt the growth of Jacob's vestibular schwannomas, but in the end, Jacob needs brain surgery.  A 12 hour, life changing, terrifying brain surgery.  Jacob will have to decide where he wants to have the surgery.  He has to decide when to have surgery. Choosing to have surgery sooner rather than later will give him a higher chance of facial nerve preservation.  He could also wait it out until the tumor is compressing the brain stem more and is life threatening, but that is risky, too.  Then there's the question of when to place an ABI. 
It seems like there aren't any good options with NF2 and we always sacrifice one important part of life for another.  Jacob turns 17 in a few days.  I wish with all my heart that he could just be a carefree 17 year-old for just a little while.  I wish he knew how that felt.  It's disturbing to see kids who take their gifted lives for granted when there are so many sick children who would cherish just one "normal" day.  Jacob was recovering from major spinal surgery on his 16th birthday, without the excitement of being able to get his driver's license.  NF2 has taken that from him and robbed him of so much of his 16th year, enduring three spinal surgeries over the last 12 months.  It just isn't fair, but life isn't fair, is it?  That's what I keep hearing.  We were really hoping Jacob's 17th year would be filled with less medical challenges and more happy adventures.
Jacob will be given the bad new this afternoon when he returns from camp.  My heart is breaking. 
Monday, we will head down to St. Pete to visit family, get in a beach day and hopefully enjoy another day at Busch Gardens.  Thursday, Jacob has an appointment with his neuro-oncologist in Orlando.  I hope they can determine if the current chemo is affecting any of his other spine or brain tumors.  Our beloved nurse practitioner, Hillary, is leaving and her last day will be tomorrow, so we won't get to tell her goodbye. After Orlando we head to Gainesville to see Jacob's neuro-opthamologist at Shands, Dr. Samy.  We will get to tell Dr. Samy goodbye.  He will be leaving at the end of August.  
Please pray for the decisions we continue to have to make. Pray for strength to face the days ahead and pray that God covers us with His love in this lengthy storm.  Pray for Jacob.