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.  

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.

Being Brave Despite Being Scared…

Although they tend to get overlooked, Jacob wasn't the only one with recent medical appointments. I took Gavin to our family doctor a few weeks ago for constant throat clearing. It had been going on for months, I had forgotten to ask about it at his four-year well visit and the throat clearing was happening more often.  Gavin kept telling me he couldn't help doing it and he couldn't stop.  I tried offering incentives, but became worried that it could be something else, especially since it was worse during meals.

Dr. Kelch did an exam and looked G over. She said he has very large tonsils, which didn't surprise me because that seems to run in the family.  TD had to have his tonsils out because they were uncharacteristically enormous.  Gavin’s throat and lungs were both clear of infection.  Dr. Kelch had G do a breathing strength test with a little plastic contraption much like what they give patients post-op, except this one you blow out as hard as you can instead of sucking in.  Gavin passed with flying colors. He was well over the requirements for a six year old, the age that the scale started. She still wrote a script for G to have a lung x- ray. We went on to talk about neurological ticks and if they run in our family. Being adopted I have very little family history and with my observation of TD’s family over the last nine years I couldn't think of any at the time. She does think it’s most likely a tick and he should outgrow it. She even went as far to say that most ticks resolve during teenage years. Oh my!

When we were done discussing the throat clearing, Dr. Kelch told me she heard a heart murmur during the exam.  Yeah, awesome.  I, naturally, start imagining the worst possible afflictions, but after talking a little more and doing some research, apparently murmurs are common, especially in children.  According to the National Heart, Lung and Blood Institute,

A heart murmur is an extra or unusual sound heard during a heartbeat. Murmurs range from very faint to very loud. Sometimes they sound like a whooshing or swishing noise.  This is the sound of the heart valves closing as blood moves through the heart. Doctors can hear these sounds and heart murmurs using a stethoscope.  The two types of heart murmurs are innocent (harmless) and abnormal.  Innocent heart murmurs aren't caused by heart problems. These murmurs are common in healthy children. Many children will have heart murmurs heard by their doctors at some point in their lives.

I’m not even going to go into abnormal murmurs because… Well, because I don’t have to.  Dr. Kelch went on to say she wasn't too concerned because G is SO active and developing on-point, but wanted him to have a heart echo for a baseline and to confirm his heart is healthy. 

Gavin has been exposed to so much more than any child his age should have to see and he does amazing processing and understanding it all.  It's the normal for him.  He has this quiet concern that I can see in his eyes, but he's too brave to break down.  I've seen it many times, like during shots, or when he had his concussion and CT, watching other little kids getting chemo, seeing his big brother hooked up to 6 lines, eye exams  and during this heart echo.  We had to go to Cardiology at Tallahassee Memorial Hospital, which G is very familiar with because we take Jacob there every two weeks, but it's still the big hospital and is scary. Gavin and I were taken in to a private room and he took his shirt off and climbed into a big bed. His tech was super cool with a hip short hair cut and funky glasses.  She started right off kidding with G and making him smile.  She explained everything to him and got busy setting everything up.  A few leads were attached, but the echo only consisted of an ultrasound of the heart.  G thought the jelly was yucky, but the leads being removed ended up being the worse part.  It was really neat to see his heart beat and watch his blood pumping through.  The tech told us about her own little guy, adopted from Russia, who has a congenital heart defect.  She even showed G a video from her phone of her son dancing and singing.  He's six years old and had G cracking up.  The appointment went as best it could.  No results were given, but she did show me a very small leak and told me if there was a great concern we would not be free to go home.  We went home.

The results were back a few days later and we were informed that Gavin only has a "trace of tricuspid," which is less than a mild case.  He's going to be ok!  He may have to do a follow up in a few years, but for now we will be thankful that our little guy’s heart is healthy. That makes my heart happy!  Since the appointment, G had an x-ray that was clear.  He was a brave boy and sat tall up against the metal, with me holding his hands above his head.  She took four pictures and G and I got to see them afterwards.  We talked about him conquering his fears by recognizing that he’s scared, but following through and doing whatever it is he has to do despite being scared.  He made us proud!

 

 

PS - I wrote this almost a month ago and the throat clearing has stopped!!! Yay!!

 

 

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 forsaken. In 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 schwannomas. The 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 today’s 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, Jacob’s 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 Shands. The 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.Jacob’s 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 NIH? I 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 Jacob’s 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.

Highlight Reel

I'm not sure where to begin.  It's been months since my last blog post.  It would take several very long chapters to tell all of our recent tales, so instead I’ll roll out the highlight reel, starting with Jacob, of course.

 

He and I are en route to Bethesda right now for his six month MRI at The National Institute of Health.  I'm a bit more stressed than usual about this trip because the amazing neurosurgeon, Dr. Asthagiri, is no longer at NIH. We were notified last month of his departure and I’ve been sick over it, as is a large majority of the NF2 community. Dr. A was our NF2 rock and I feel a bit abandoned over his leaving. He did send Jacob and me a personal note saying that he would continue to see Jacob if it’s possible, and that he would continue to review Jacob's scan and provide surgery for Jacob if needed. I would like to think we have not seen the last of Dr. A, but UVA is a long way from Florida.  With all of my anxiety and fears aside, Jacob and I wish Dr. A success and happiness in his journey!  So, with all that said, we will be seeing a new neurosurgeon at NIH on Thursday, most likely an appointment spent rehashing Jacobs entire medical history. Exhausting!  And sad. Not looking forward to that, or to the possible let down from the MRI results that could show the chemo isn't working.  We were supposed to discuss radiation versus surgery for Jacob's right vestibular schwannoma to save his facial nerve and increase hearing preservation odds.  That's not happening this week.

 

Medically, Jacob is doing well overall, or at least appears to be. Since his second fusion surgery, his neck is supported and his left hand function is improving. He continues to come home from occupational therapy with good results of positive changes. He’s back to opening doors and bottles and being able to do buckles and tie his shoes (all the things we can do easily that we take for granted). His physical therapy is slow-going. The side to side and up and down range of motion in his neck continues to be limited. The hyperextension in his leg at the knee isn't getting any better either. I'd like for Jacob to be more diligent with his at-home exercises, but he's a teen age boy and lazy is his middle name. As for finishing the 10th grade, it's happening! Jacob was assigned a very cool and patient teacher who comes three times a week and stays well over his paid one-hour sessions. Jacob completed and passed 10th grade English and History. He's very close to finishing Biology and just beginning Algebra, but according to TD, Algebra doesn’t seem that difficult for Jacob, which is a really good thing! School work is consuming a lot of his summer, but it's necessary. He's done a few fun things.

 

Well, that was a bit more than a highlight... Who's next?

 

Brie survived freshman year at Leon! And so did TD and I, but barely. Life is really tough on these teenagers, but I'm reporting positives! I loved watching Brie grow in her dancing this year. She loved her dance techniques class at school and continued with Jazz at Hannah's. We added Ballet to the schedule this year (my favorite!) and she did amazing in all her efforts. Brie's studio recital was moved to an old theater venue in Thomasville. I was a bit bitter about the drive for rehearsal and recital, but it turned out just right. Brie turned 15 years old that day, too. She was showered with flowers and treated to dinner at Osaka’s.  My eyes still well up when I think about how much she's grown and how fast the time is going.  My little girl isn't so little any more. A few days after her birthday, I had the honor of watching her dance again, but this time at Leon with her classmates.  Let me tell you, they ROCKED it!  All different types of dance were incorporated and Brie was perfectly in sync. She was even chosen as one of the eleven freshmen to perform a piece. Considering there are a large number of 9th graders, this was a big deal. Brie is going to move up to Dance II and continue at Hannah's.  She's hoping to add Point to her list of classes.

 

I am very happy with Brie's grades. She did very well in all her classes, but still had to go to a summer prep class for Biology Honors End of Course Exam.  It floors me that a solid B student can't pass the EOC and I haven’t yet decided whether it’s the student or the education system.  I’d imagine it’s a little of both. She's retaking the EOC exam on the 23rd. When that is done she will be an accomplished, soon-to-be sophomore with 10 credits, two shy of being a junior! Brie is working on all the steps to get her FL driving permit. There's so much more to do than when I was 16, many moons ago! I'm thankful she will be taking Driver’s Education in the fall as well! And if you haven't seen Brie in the last few weeks, she's now a brunette, soon-to-be-returning-to blonde, or as G calls it, "golden hair."

 

Speaking of my little firecracker, he's awesome. Gavin turned a big four years old in April!! He finished Pre-K3 and got his very first report card. Yes, he did.  He excelled at everything and his daddy and I sat in awe of how much growth his "work" showed for the year. More happy tears. Gavin also played his first season of spring tee ball, which was both entertaining and hilarious! I loved watching him learn the fundamentals of playing ball and I loved even more watching TD coach him. After six weeks, G and his teammates were starting to "get it” and really became a team. I think tee ball should last longer! We had a pizza party and G got his first baseball trophy!  TD and I were (are) so proud.  I already wrote about him swimming by himself and how good he's getting on his strider bike. G ran a one mile trail race two weeks ago, posting a sub-15 minute mile, but had a meltdown on the course after falling on a root. Poor little knees! His next one is this Saturday.  He's also enjoying gymnastics and has conquered his fear of flipping over the bar alone. This week he's been busy helping me take care of our new bunny, Stella Ella. G will be starting VPK, five days a week, 9-12 in the fall. Yikes! I'm going to miss him.

 

Hey, guess what? I've been running. Haha! Still loving it and loving my Moms RUN This Town group. I’m running the Gulf Winds Track Club Summer Trail series and so far have found it a lot of fun. I completed my goal of running 100 miles in June and I've committed to running my first 26.2 in February. Exciting!!! Well, to me it is anyway.

 

I think I'm even more excited that TD agreed to do a triathlon with me (using “agreed” loosely). I’ve wanted to do a tri, but I'm scared of the swim. I knew that if TD swam with me I would feel safe. I was totally deflated to learn he would not be swimming with me due to gender and age. Operation triathlon is still moving forward, though. I'm going to suck it up. The swimming and biking has started. Have you ever heard of an exercise called bricks? Yeah, me neither, until this morning. Those started too!

 

TD continues to study for his CPA exam and fishes when he can, which isn't often enough. He had a birthday too, but after 30 they aren't worth mentioning, right? Especially when everyone’s sick.  We took a mini vacation to St. Pete, went to Busch Gardens and enjoyed a beautiful day at St. George Island.  Seems like it’s been raining forever.  We’re ready for the sun to shine, or to see Noah, whichever comes first.

 

I'm sure you've read enough for now! I started in a new group I can't wait to write about and I will update about our appointments at NIH, but for now, good night!

Thanks for reading!

 

I will add pictures soon!! 

 

 

Big, Big News!

 

Our BIG BOY four year old has learned to swim! June 21, 2013 will go down in Gavin's book as the first day he braved the water alone!

 

Gavin took swimming lessons over the past two summers, hoping that he’d take to the water like a guppy. At age two, we did a mommy and me class at the city pool, and last summer G took a two-week three year old class at the same city pool.  He did not learn to swim.  As Gavin's love for fishing has grown and his curiosity of the outdoors continues to flourish, being around water and him not being able to swim has made TD and me very nervous.  We told G in May that this summer was going to be his summer to brave the swim!  I was aware that this could’ve very well NOT been his summer to swim, but I'm pretty sure there was no “option B” in TD's mind.  Jacob and Brie were equipped with the ability to swim at four years old but didn't conquer their fear until much older, and although I don't mind pushing our kids to achieve things, I also worry about pushing too hard.  The solution was signing G up for swimming lessons the first week of summer with a professional, choosing Alan Cox Aquatics at the Piney Z Plantation.

 

Leaving him no time to "play" his own way in the water and getting right down to business, Matt, the instructor at Alan Cox, was fantastic.  He was very good with the kids and worked with them on holding their breath, going under the water, using a kick board, jumping in, swimming with their arms out, floating and general pool safety.  I loved the relaxed atmosphere and the fact that G and I could stay and play in the water afterwards!  Perqs are very important!  I also loved that the pool has a huge stair area for the kids to play comfortably until they are ready to go out on their own. 

 

This year was the first year G's coach was a man so I'm not sure if that helped, but after two weeks swimming every morning with Matt for an hour, and then with me for another hour, G had all the information he needed to swim.  All that was left was to conquer his fear.  We traded in his puddle jumper for a dollar store super-skinny noodle and we had three beautiful mornings of swimming in the shallow shores at the beach in St. Pete last week.  Gavin did not agree that it was the right time to swim.  He played very well without floaties and went under the water, but he just wouldn’t let himself swim!

 

Friday was our first day back in the pool since his swimming lessons, and when Jac, Brie and I took G to swim at Killearn, it clicked!  Gavin swam!  Under the water, holding his breath, the whole 9 yards.  We went back with TD on Saturday so he could show daddy that he's part fish now!  We had so much fun! Gavin still refuses to float on his back, but he's working on it.  We can finally have some level of comfort on our water-bound adventures!

 

We are very proud!! Beyond proud.  We’re a happy, water-loving Aquarius mama and crabby daddy!

 

Great job, Gavin!

Happy Friday Team Jacob G! Happy Mother's Day to all you mamas and Happy sweet 16 birthday to Chason Grimes!!

I just wanted to write a quick note and let everyone know that Jacob is doing great!!!

He's really recovered well from this last fusion surgery! 

I was a happy mama watching Jacob and G play their form of kick ball at our picnic on Tuesday and seeing Jacob get to be the big the big brother that he loves to be, chasing G around the playground at Tom Brown. 

Jacob has started back with OT and PT and his left hand is getting better at each appointment. 

We got a great home bound teacher coming in working with Jacob three times a week and Jac is doing pretty good with the work he's been given. I see a huge difference in Jac without the stress of six hours of school every day. 

Jacob has started back to Scouts and is working on a Bird merit badge. One step closer to Eagle!! 

Now I pray for it to last! Jacob needs time to enjoy his life, to live without pain and to continue to heal physically and emotionally with less stress!!

We go to Shands next week for post op and NIH July.