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. 

Past 3 days...

April 8, 2013 Monday night:

Good evening family and friends. I just wanted to check in with everyone and
let you know Jacob is good to go for surgery tomorrow. Today Jacob had pre-op with neuro-surgery,
labs, prescriptions, and pre-anesthesia.
Other than the lab refusing to use Jacob’s port to draw blood, today was
long, but uneventful. We were so happy
he did not have to be admitted for traction and we have been able to have a
free evening in Gainesville. Jacob and I
enjoyed a nice dinner at Chilli’s and dessert at Cold Stone Creamery. I went for a short run and Jacob has spent
the evening watching the second Tooth Fairy movie with Larry the Cable Guy and
Anger Management. When did he get old
enough for the latter? Anyway, he’s all scrubbed up with his antibacterial pre
surgical wash and as ready as he can be for tomorrow. We are to report to the hospital at 6:00 am
and Jacob’s surgery is scheduled for 8:00.
We were told by our nurse practitioner that surgery should be done a
little after lunch. We also asked if the
hardware would be extended or replaced with larger rods. Dr. Pincus said he won’t know until he opens
Jacob up for the procedure. We also
asked if Jacob could expect to lose another rib and they said they “don’t think
so.” Lastly they informed me of the
risks, and of the greater risks of this fusion being higher up and to the base
of the skull. I was informed that they
may even need to make an incision in the front of Jacob’s neck (throat area)
and go behind his esophagus and place a plate so both sides of the spine are
supported. I reassured them that we want
them to do whatever they think is necessary so Jacob doesn’t have to go through
this again anytime soon.

That is all.
I am sleepy, snotty, sneezing like crazy, missing our other family parts
and worried to pieces about tomorrow.
Jacob is calm and cracking up at whatever he is watching now on his
iPad.

Thank you all for your prayers, love and
support. I will write an update as soon
as I can tomorrow!


Blessings,

Tammy

Apr 9, 2013 8:44 AM
Tuesday April 9, 2013 8:00 am

Jacob checked in at 6:00 am and they immediately took us up to pre op holding. Jacob got his port accessed and vitals taken...and his favorite part of all, undressed for the dreaded gown. We talked to several doctors, none of which that we have met before. Jacob was in good spirits. We laughed and joked and he played music for me. Jacob did get upset when the Neuro surgeon went over how high up Jacob's new incision will be, or so he said it will be all the way up to the middle of the back of Jacob's skull. This was the first we heard of this so we'll see how Jacob looks in recovery. We didn't see Dr. Pincus, the operating surgeon, yesterday or this morning.
I'm waiting on TD to get here and Jacob's dad and family will be here sometime today as well. So Jacob will have a lot of loved ones to wake up to.
Now we wait.

Wednesday April 10, 2013

Last night was a bit rough and, considering how well Jacob was doing after Recovery (which has become a nightmare thanks to the x-ray crew… Thank goodness he doesn't remember it…), a bit unexpected as well.

Last night Jacob was plagued with a pretty horrible case of the shakes and nausea. After throwing up everywhere and fighting hard to get his pain under control without making him sick, we settled in around 1:30am only to have a new patient admitted to our room. You may recall that during the first fusion recovery, Jacob’s roommate was a motorcross child (maybe 8?) that broke his collar bone and cried the entire time for his grandparents that were nowhere to be found. Well, we lucked out a little more (if that’s what you can call the situation… “luck”) this time that it was a 17 year old boy who had been in a SUV accident. He was in a collar and under watch due to the fact that the vehicle flipped. This kid walked away with just scratches. I'd say he's got an angel. And aside from us being woken up during the shuffling in, he's been quiet all night, hasn't complained and is very polite. His family hasn't been here since they brought him in. I always find this odd, but I guess all of us are just doing the best we can.

Fast forward to 6:00am, one of Jacobs surgeons came in (we'll call him Dr Far because I can't remember, or pronounce, his full name). He talked to Jacob and looked at his incision. Jacob's was thrilled to know that his incision only extends slightly above his hairline and this time they chose to use glue instead of staples or stitches. They even cut out the old scar and pulled the unaffected skin together in hopes it will look nicer when it heals. A little ray of sunshine! Since J had such a hard time stomaching the dilaudid, they took him off the pump and switched him to oral pain medications. They also started his tordol!! Jacob ate a little breakfast and got up for the first time and took some steps. Dr Pincus and Leigh Ann, our nurse, came in and saw Jacob. They reviewed Jacobs neuro exams and said he could go home whenever he was ready.

Since I started this post earlier this morning, Jacob has eaten well, taken a shower and done PT. He's really doing great. His pain is being controlled well and he had a nice visit with his dad and step mom. Jacob even said he’s ready to go home. I talked him into staying tonight. One more night.
Thank you all for your support. I know he has a long recovery but the healing has begun! Thank you God!!

We Run for Jacob (aka “But I had no idea!) 

Most of you are aware of our wonderful group, Moms Run This Town, so I’ll try to keep my probably-way-over-the-top adoration for this truly outstanding community of women to a minimum (or not…). I love being the Tallahassee chapter leader, and as our group continued (and continues!) to blossom, becoming much more active not only locally, but statewide and nationally as well, I realized that it was in the best interest of everyone to recruit help to keep up with, well, everything.  I recently reached out to my running partner in crime, Tammy, to help me co-lead the chapter, and I must say, I did a dang good job picking the best candidate!  Tammy is the perfect mama for the job, sharing our love for running and bringing a very active approach to leadership!  Little did I know her first project would be for me, for my son and for the cause nearest and dearest to my heart.  

I was excited to run in the 38^th Springtime Tallahassee 1 mile/5K/10K, a popular local race with a challenging and hilly course, this past Saturday.  The fact that it was local was a plus, but I had no idea exactly how special this race was going to be.  

Gavin had a tee ball game at 9am on Saturday, so I tried really hard to get out of carpooling to the race on Saturday morning. I wanted to run the race and rush to the ball field (since I haven’t yet figured out how to teleport or clone myself…).  Tammy insisted I ride with her, but wouldn't tell me why.  Trusting her completely, I figured she was doing something nice for me (because that's the amazing person she is!), but I had no idea! 

On Friday night, our group's Facebook board was filled with "Flat Mama" photos, a tradition of posting our outfits and gear for the next day.  I loved the fact that so many members were racing Saturday and loved all the cute outfits even more!  When Tammy showed up Saturday morning, she (oddly) asked to come in with her hubby, Harley, in tow with his fancy camera.  She was bundled up in her running jacket and not in her posted flat mama!  Tammy had a hand full of shirts and a bag of ribbon.  Under her running jacket was an awesome “We Run for Jacob” shirt with the inspiring words, “Love, Strength, and Wisdom” surrounding a blue and green ribbon with the signature MRTT runner girl (my absolute favorite little decal!) in the middle. As I write this, remembering this moment, my eyes are filled with tears of joy!  And guess what?  I STILL had no idea! 

Tammy had a shirt for me and for everyone in our family. After happy tears, pictures and some shirt surgery, including but not limited to cutting sleeves and adding ribbon, we were on our way to run the 10K.  I spent the next 15 minutes in wonder, contemplating how special it was to have someone so kind in my life (you know, other than my wonderful immediate family), to make shirts for me, for herself and for my family.  We made the hike up the hill to Monroe Street and, eventually, to the Courthouse lawn.  We scheduled a MRTT photo meet-up prior to the race, and I was proud as punch to wear my “We Run for Jacob” shirt!   

When we arrived at the rendezvous location, all of our members running the Springtime donned “We run for Jacob” shirts!  ALL OF THEM.  My heart pounded.  My head spun.  My eyes… yeah, yeah, you all know where this is going.  Surprise!  I was completely stunned and overwhelmingly amazed with such a HUGE show of support!  After many loving hugs and heartfelt thank-you’s, Tammy informed me that, thanks to a series of people, thoughts and events, she was able to raise $1,000 to be donated to the Children's Tumor Foundation, the leading provider of Neurofibromatosis research and support for families living with NF1, NF2 and Schwannomatosis.  One thousand dollars!  How awesome is that!?!  These acts, acts of love and support from my best friend and from those that have never met me or my son, went so far above and beyond! 

Thank you, Tammy, for initiating and mobilizing such a wonderful series of actions to make a difference for my son and for so many others I care about!  You are truly one of a kind!  Thank you, Laura, for encouraging, and, Jacy, for designing, an awesome shirt!  Thank you, Stirling, for making the design come to fruition.  And thank you to everyone who participated and donated!  It’s cliché, but words seem so hollow when you experience the goodness of kind hearts in this magnitude.  My world is full of love and support, and no words can express my deepest gratitude.  I’m filled with a great peace that I am surrounded by so many caring people.  So far beyond thankful.  I praise God for each and every one of you! 

I discovered something different this race.  The Springtime Tallahassee was my best 10K to date.  I had a fantastic run!  Not because I didn't suffer any side cramps, because I did.  Not because of my time, because it wasn't even close to a personal record.  But because of the runners who ran with me, and who ran for Jacob, my son and my hero.  

As I sit here at the hospital, anticipating Jacob's fourth major surgery in 14 months, I have the beautiful memory of Saturday morning, my love of running and many amazing people who are fighting this battle with me.  

My shirt is washed, packed and ready to be worn tomorrow during Jacob's surgery.  

Thank you all for running for a cause!!!

 

P.S. Jacob loves his shirt and thought that it was "really cool" that so many people are rallying for him and for our beloved NF2 community.  The two words are more than we get for most things from Jacob!