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. 

Hi, my name is grumpy! 

Jacob's RN for the last 12 hours has been great to Jacob, but I'm ready for the nursing rotation this morning. It can't happen fast enough. I'm a fully aware that I am a pain in the butt, demanding you get it right parent and that you don't over baby and over medicate. I understand its annoying to constantly have to answer questions, but get over it. The lack of respect can be beyond frustrating to me. Don't insult me. I may not be on staff, but I know my son and I will not be ignored. Yes, lack of sleep intensifies these negative feelings. I am internally stewing and watching the clock for the shift change. My kindness is sweating bitterness and there maybe a snap drawing near! 

The little boy next to us is scared. He cries in pain and fear every few hours. Maybe he'd like a new nurse too. 

Ok vent over...

MRI with contrast done. Jacob went down at 5:30 am. I told then that Dr A was going to look at him first and then decide if today was the best day for the MRI but that didn't happen. I also told them that I wanted them to do it later because all of his doctors usually come around 6 am. But whatever. Jacob had his MRI with contrast and it's over. It was not fun as you can imagine but it's done and Jacob is happy that's behind him. Jacob did miss Dr Kesser's resident who came to remove the drain from the abdomen and change the dressing. They may leave it off for a while too. He's coming back after his first surgery so that will happen later today. Hoping with the drain out the incision will bother him less. It starting hurting last night. Neuro came in too and they will also come back later. We haven't see Dr A. I wish he would come in. Jacob looks better this morning. His facial weakness seems to have improved. I've asked the nurses to not give him any ativan until he sees Dr A. It makes Jacob so sleepy and non responsive. He only had it once yesterday. Jacob is still getting Zofran, antibiotics, steroid and pain medication, Fentanyl. Today PT is going to get Jacob up to walk. He needs to move around more. He's getting so stiff and he's in the "fear place" he gets into where he's scared move. Mind over matter!! 

Day 2 recovery underway. 

God grant me patience and flood my emotions with kind thoughts! 

Continued...

Dr. A came in twice today.  Once this morning and once this afternoon.  He said that Jacob looked good several times.  I could tell he was disappointed that Jacob's facial functions was not as good as right after surgery this morning and this afternoon when he saw that it was continuing to digress he said they would continue to watch it.  He said more than once too that the lack of weakness right after surgery is a good indication that better function will return in a few months.  Jacob keeps telling me he is having a hard time because of the swelling, but the swelling doesn't look too bad this evening.  He was really tired when Dr. A came in this afternoon so I am hoping the exhaustion is contributing.  Only time will tell. Dr. A told me this morning the blood was ok in the spinal fluid line.  This evening he said he wanted to see that starting to clear up.  He spent a little while shaking the line to get the blood spots to flush through.  As of his last 15 cc drain, which happens every two hours, there is still blood. I keep reminding myself that his brain has been through a great trauma.  I should be praising the time I had with him today and not complaining about what isn't going by the text book!!  

I have been able to spend time with one of the pastors here from the UMC on campus, Rocky.  She is wonderful.  She said with me until Dr. A left me after he was done with surgery.  She prayed with me and came and visited Jacob and I today.  I wasn't sure sitting with a stranger on the most stressful day of my life would be good for me, but God, once again, knew better than me.  I am so happy she was there.  I look forward to keeping in touch with yet another beautiful person God has sent me! Thank you Jane!!

Jacob is up for an antibacterial birdbath soon by his nurse and in the morning he will have an MRI.  I thought Dr. A was kidding when he said they have a person who removes braces if they junk up the images, but they really do.  The nurse said they have to use them often for trauma patients.  Makes sense.  Hoping for one MRI and not having to take his dang braces off again!!

I will say that Jacob is dealing with a lot of very frustrating things, like confusion and dizziness, but his pain is mild when he is laying down and I am thankful for this!

I'm not sure what I am forgetting to report.  I am in a fog, I have spent the day by Jacob's side or dozing for five mins here and there.  We are moving right along.  As far as I know Jacob will stay in ICU one more night and we will go from there.  He is waking up now!! and he's hungry.  I love grilled midnight snacks!! And the Red Sox win the World Series!

 I will continue to praise God for his good works in Jacob and be thankful!!  I am also so thankful for all of you!! You are amazing and I am one lucky mama to have all of you loving us!!

Happy Halloween friends!! I will miss spending this fun night with my little doodle bug, but I know he is going to have the best time and that's what's important!!

Dear Blog and Caringbridge family,

Please forgive me for posting this here so late.  I tried to keep everyone up to speed on Facebook, but I realize I have neglected my other readers on LTML and Caringbridge.  I am exhausted so I am first going to just share my updates and then I will write a quick update for today.

Thank you all for your continued love and support through this journey.  Jacob, with God's protection still has so much work to do!! Bring on the healing!!

Tuesday October 29, 2013 Surgery Day

5:30 am Report to University of Virginia Hospital, Admissions

Taken back to pre op with in first 10 mins of arrival.  Met with various doctors, nurses and got Jac dressed in the fabulous surgical gown and hair net we've grown accustomed to. 

Dr. Kesser visited Jacob again and talked to him again about the side effects of having his hearing and balance nerves removed.  Jacob will be deaf in his right ear when he wakes up.  Jacob will suffer from dizziness, disorientation, nausea and balance complications until his brain adjusts to the balance nerve being gone on the right side.  After several days the dizziness should pass and after several months the balance issues should resolve some. Dr. Kesser briefly went over how the surgery will go...

Anesthesia will get Jacob comfortable.

Dr. Asthagiri will place the spinal fluid drain.

Jacob will be positioned for the long haul.

Dr. Kesser will drill away the bone behind the ear.

After opening, Dr. Kesser will work on peeling the tumor off the facial nerve.

Dr. A will take over and resect the rest of the tumor.

A fat graph will be done to obtain fat from Jacob's abdomen for packing and closing of the surgical opening.

Closing.

8:07 am Jacob was taken to the OR.  Let the wait begin! Pray Pray Pray!!

At 10:30 am Sallie, surgery nursed called. Surgery is underway. Dr Kesser is "under the microscope" and has been drilling for about 30 mins. Only 3.5 hours to go of drilling and then Dr. A will start his work. No surprises. Jacob is doing well.   

12:20 pm check in. Dr. Kesser is still drilling the bone away to create the opening for Dr. A. Jacob is doing well and everything is going as planned.

2:30 pm Nancy, Dr A's nurse came & saw us. She isn't surgical but said she spoke with the OR and Jacob was good and they were still drilling. Then at 2:50 one of the neuro doctors called and said they are switching teams. Hoping Kesser come down soon. Dr A is now working on removing the VS tumor. This will also take many hours. Thank you all for your love and support.

4:40 pm Dr Kesser came down and said Jacob is doing well. He said he spent some time peeling the tumor off Jacob's facial nerve. He said J's facial nerve is responding well. They aren't near the other nerves yet. He said the VS is very large and it will be many more hours. Dr Kesser was smiling so that was comforting.

7:14 pm Jacob is still in surgery. Nurse says the doctors are working away and in good moods.

14 hours and counting since Jacob went to OR. Will be several more hours before the second stage of this battle begins. I put on my "Everything Has Beauty" shirt today to remind me to find beauty in this day. Riding the metro from NIH to the DC Airport, renting a car, driving to Charlottesville, visiting with us then driving back to DC and back to the metro. That's dedication!!

These amazing ladies have strengthened me & kept my spirits up! I love them & forever grateful. Casey, Ali &Laura thank you!!

7:30 pm Update just now. Still working on Tumor resection. They still have to do a fat graph and pack and close skull opening and then close after they finish removing the tumor. 
Please don't stop praying!! There's still so much to be done!!

9:00 pm update still working on tumor. Still have to do fat graph, packing closure. Nurse said roughly 2 more hours from now.

11:00 pm Just spoke with OR Nurse and they have started the fat graft and will then pack & do close. I'm headed up to floor 6 at neuro to wait for Dr. A. Nurse said it will be at least an hour. I'm ready!

11:45 pm, almost 16 hours after Jacob was taken to the OR he is done and has endured a 15 hour surgery. Facial nerve did respond to lowest stimulation. He isn't awake yet. I haven't seen him. They couldn't get much fat from his abdomen so they didn't have a lot to pack the opening with. Will need to have the drain longer for healing with less fat. Next 24 hours will be watching for CSF leaks, stroke, brain bleed. Lower cranial nerves not involved and VS easily pealed away from brain stem. Jacob's hearing and balance nerve were removed. He will be deaf on right side and have to relearn his balance. 

2-5% of the tumor was left. 

As I was typing this Dr A just came in and said his face looks good! Praise God!!! His still has his precious smile!  I can't wait to see him!!

I have no words to express my graffiti the for the love and support I received today from all the messages, texts and calls. I am beyond blessed to have such an amazing support system. 

I realize I am so tired I misspelled gratitude so bad in my first sentence that my AC thought it was a completely different word. I'm leaving it because it's funny. 

Casey Carter is making the long drive home tonight. May she be safe. Thank you for once again enduring a terrifying surgery wait with me. I love you!

Wednesday, October 30, 2013 Post Op 

8:00 am Jacob's night (or really last few hours) in picu was rough. Jacob was vomiting blood. His spinal fluid drain is filled with blood, which they said happens sometimes, is normal and they are watching it. It's hard for me to look at though. His nose has been bleeding. He's very confused and moaned most of the night. His butt  is causing him a lot of pain from a pressure bruise, bed sore or pressure ulcer to be. I have not seen the right side of his face move very much. He is mumbling because it isn't moving well, his mouth is dry and everything is swollen from 15 hours of intubation and needle sensor probes. Jacob swears there is something in his mouth and I keep telling him there is not. He can not smile very big for me, but he does have motion and his face is not drooping. I'm hoping it is just from swelling. Dr A's "good" must be different than what I expected. Jacob's blood pressure has been high so his monitor went off for many hours. He's on antibiotics and a steroid. They took him for a CT and brought him back. Waiting on that to be read so he can have liquids. I've had maybe an half hour of sleep so forgive me for being unpleasant. I didn't expect this to be easy, but still had hoped. They just came in and changed the dressing on the fat graft and drain in his belly. It is going to be a huge scar across his stomach. Please pray for swift healing for Jacob!! It is starting off rough and he is so dizzy. He feels like the walls are moving, the tv is up side down and he doesn't feel like he's laying down. He keeps asking me where I am and holding his hands up to "stop the room". He asked me if he was in a box. They warned us the removal of the balance nerve would cause this. I know tomorrow will be better than today but it feels distressing right now.
Dr. Kesser came in while I was posting and said Jacob's facial movement was better right after surgery and said the change is most likely due to swelling. Hoping to see Dr. A soon.
Please continue to lift Jacob in prayer. His little body has a lot of work to do and needs God's help!

10:00 pm Wow Today has been a long day of ups and downs.  I am filled with very random thoughts so bare with me!  I will start with the last few hours...they have been pleasant in comparison to earlier. The good moments! Jacob is peacefully sleeping right now and has been for a while.  I should be sleeping too, but I can not.  I did get an awesome nap in for 90 mins at around 4:00 pm today.  Finally!!  Our best moment of the day was our dinner at 5 pm.  It was the first meal Jacob ate. Chicken fingers, chips and a banana, so Jacob.  We listened to country music with ESPN muted in the back ground.  Jacob and I sang along with the music to practice him using his facial muscles.  I enjoyed making funny faces with him.  Around noon today Jacob had ice cream and felt up to calling a few family members.  He was happy about that! 

We saw Dr. Kesser early this morning and he wanted Jacob to get up and sit in a chair today.  Physical therapy came in around 1:00 pm and we got Jacob into a chair only taking one or two steps.  I am very upset that of all the painful things Jacob could be feeling the most painful part is on his butt area where he is bruised from positioning.  Jacob sat for about an hour in the chair and he even said the spinning stopped for a few minutes, but then he complained that everything in sight was bouncing.  He has spent a lot of the day with his eyes closed.  Dr. Kesser said his brain will adjust the more he has his eyes open but wanted Jacob to close them whenever he felt like he needed to.  Jacob hallucinated most of the morning, saw double, talked about the walls coming in, his nurse riding a wave, the curtains changing colors and had bazaar conversations with himself.  We know this is due to the surgery and not the drugs because this is the first time he has gone through this and this is surgery #13.  We saw Dr. A twice.... to be continued.  I have to find the plug to my laptop....

Monday, October 28, 2013

Just so you know my posts for the next week will be unedited and lacking TD's touch, so bare with me!!  I will try to control my randomness!

Right now I am very happy I packed the Chamomile tea from the first hotel we stayed in.  I suppose from the weather changes, hotels and lack of sleep I have the beginnings of a cold.  The tea will hopefully sooth my throat and mind!

Speaking of hotels we will be packing up again tomorrow and will not be returning to a hotel unless Jacob is discharged before Monday.  The Ronald McDonald House is under renovations and full and the Hospitality House is full until at least Friday. We had hoped to get into the RMH so I didn't book a hotel past tonight and there are no hotels in the city because of a Pearl Jam concert here tomorrow.  Oh well!! Not the biggest worry.  It will be fun toting two back packs and two suit cases from our hotel to waiting to recovery to ICU.  I need the work out :)

It was good to see Dr. A today.  He was his bright and funny self.  I was worried how he was going to explain the surgery to Jacob and how Jacob would respond, but Jacob was calm and comfortable with Dr. A.  Jacob wasn't aware that he was going to have a lower lumbar drain for cerebral spinal fluid build up for a few days so Jacob had many questions about that. It is a used to keep pressure off the surgery site so it can heal and prevent CSF build up.  It is a precautionary method.  I had not explained in detail to Jacob how the surgery was preformed and where the incision would be and all the risks.  I wanted Jacob to hear it from his doctor and I'm pretty sure there isn't a 17 year old on the planet who wants to hear they could have a stroke, go into a coma or die during surgery.  Dr. A said tomorrow will be one of the biggest days of Jacob's life.  Jacob and I agree that it is a huge surgery, a life altering battle, but we like to think of the biggest as the best and in different terms than surgery.  I am thankful Dr. A is kind enough to acknowledge to Jacob how important he is, his life is and that tomorrow is a huge day for him as well. For a general idea of tomorrow Jacob has to be at pre op at 5:30 am.  That will be a chilling mile walk for more that one reason.  His surgery is scheduled at 7:00 am.  The surgery is averaged to take ten hours. The first 4 hours are spent opening Jacob up and delicately drilling away the bone behind the ear.  This will be done by Dr. Kesser, who we met today and like very much.  Dr. Kesser trained at House Ear in LA.  For those of you who aren't in the NF2 community, House is the leading NF2 clinic in the world and learning under Dr. Brackmann is significant.  It's good he's on our team.  Dr. Kesser will also assist in closing Jacob up, which I think will never happen because they use fat from the patient's abdomen to fill the area where the bone was removed and Jacob has NO fat.  They assured me they would find some, but I really don't know where.  This spot will have a drain as well.  Jacob's positioning was also a concern due to the lack of mobility in his neck due to his fusion all the way up to C2, but Dr. A has a plan for this as well.  The surgery is being done via the translabyrinthine approach.  After the opening (incision behind the ear slightly in the hair line then the ear is pinned forward) and drilling Dr. A will go to work on the tumor, or really tumors resection.  In NF2 it is never just one tumor that make up the acoustic neuroma mass.  Dr. A talked in great detail about facial nerve preservation and preservation of the lower cranial nerves which control speech and swallowing. He also warned Jacob that waking up with facial weakness is normal and usually goes away.  He said they tend to know before surgery is even over how the facial nerve will respond.  Jacob will be hooked up to monitors for all of the nerves.  Under the jaw, in the roof of his mouth...and I can't even remember where else.  There's so much that could go wrong, but I am not thinking about that.  There is so much that will go right! Dr. A told Jacob that his 3.3 cm tumor was at a good size where his chances of preservation is much better than after 3.5 and larger. So that's what I am hanging on to!! 

All of our day was spent in clinics and pre anesthesia.  We did hike to the post office to mail Gavin a post card from our hotel after walking home from the hospital and then another mile to eat.  Jacob has been a trooper putting about 6 miles on his legs total today.  It was an adventure.  We got lost going to the post office :) 

At home - TD and the kids made it through the day!  TD didn't get to work until after lunch today because he had to take Grissom to two different vets, x rays, exams, and medications.  He's suffering from narrowing trachea, anxiety, an upper respiratory infection and he's over weight.  He is at home now comfortable.  Hoping he will feel better soon.   Papa and Nana did awesome with G and Brie and Mitzi brought dinner to Buckingham, which  everyone enjoyed very much.  THANK YOU :)

I am off to pray, talk to my family at home and hopefully get Jacob to bed. 

I will update as much as I can tomorrow.  Thank you all for your love and prayers!! 

Jacob and I arrived safely in Charlottesville, VA yesterday. Today our close friends, the Carter- Lindquist family picked us up for lunch and took us out to see Thomas Jefferson's stunning mountain top home and gardens, the Monticello. It was beautiful. Later Jacob and I took a short walk on UVA campus. Jacob was thrilled to find a Mellow Mushroom for dinner and enjoy one of his favorite pass times, pepperoni pizza and football. I was super happy to see Peyton not only on the field but rocking out the yards second half. I know TD had an awesome day in fantasy football. Yesterday watching our Noles honor Bobby and continue our winning streak was rewarding to say the least. It was a good weekend in football and overall a good weekend for Jacob. 

Tomorrow Jacob will go to neuro clinic to see Dr. A, discuss surgery and have an exam first thing. Then we go to the walk in pre anesthesia clinic. That just sounds long. Last we will meet Dr. Kesser for the first time in his clinic. He is the ENT surgeon who will be assisting in Jacob's surgery.  

Jacob is in good spirits. He did wake me up this morning at 6:00 am screaming in a nightmare but he doesn't even remember. I couldn't even wake him up. I know he is worried and scared, but he is already being so brave and pretending like he's "fine."

I can't say enough times how much I appreciate everyone's prayers, love and support. I am beyond thankful and feel so blessed to have a strong Christian foundation loving Jacob!, our family and me. Through all of our NF2 trials and life's troubles I will still scream from the mountain tops, God is good and I believe He will keep Jacob safe and give us peace and understanding. 

I continue to pray for my daddy. We are still waiting for the results from his bone marrow biopsy. We need these back so we can make a plan and be on our way to getting him better!! 

It's very small in the big picture, but my Yorkie, Grissom is sick. He's struggling to breath since yesterday. We hope the vet will have the answers for us tomorrow. I love him so much. He's been my best friend for 8 years and I really need him to be ok. 

That's all for now. I will update after our appts tomorrow. 

Peace & Love!!

Tammy

Surgery is approaching

A few things have changed since my last post.  I am thankful to report Jacob will be having his right vestibularschwannoma (acoustic neuroma brain tumor) removed at the University of Virginia with Dr. Ashok Asthagiri, Jacob's neurosurgeon from NIH on October 29, 2013. 

 

Jacob will be having CT and MRI scans on Wednesday, October 16 here in Tallahassee to determine the approach Dr. Asthagiri and Dr. Kesser will use for the resection.  We have not met Dr. Kesser, but he trained at House Ear, which is a leader in NF2 care. 

 

The University of Virginia has a neurofibromatosis (NF2) clinic which is lead by Dr. Asthagiri. Since a vestibularschwannoma (acoustic neuroma brain tumor) resection in a patient with NF2 is significantly different from a standard acoustic neuroma resection performed in a patient without NF2, we wanted to take Jacob to a doctor highly experienced in NF2.  There is strong evidence that shows that tumors are more difficult to resect and that multiple nerves may actually be involved in patients with NF2 versus regular acoustic neuromas, therefore often causing worse outcomes like higher facial nerve palsy rates.  A neurosurgeon with specialist experience in NF2 is recommended in order to be able understand the manifestations found in an individual with NF2 and take these into consideration when operating in order to make surgery as safe as possible for the patient.

 

So, I ask for your continued prayers in our NF2 journey.  I ask for prayers of peace and understanding for Jacob as this surgery quickly approaches.  Jacob will lose his hearing in the right ear and could suffer from facial paralysis and balance loss.  There are many other risks, but these are the most common side effects to this surgery.  

 

If you want to read about the doctors please see the link below.

 

As always thank you for your support.  If you would like to help with play dates for Gavin, time with Brie or financial donations for our out-of-budget costs, please contact me.  

 

http://www.medicine.virginia.edu/clinical/departments/otolaryngology/department-of-otolaryngology-head-and-neck-surgery/Physicians/bradley-w-kesser-md.html

 

http://www.medicine.virginia.edu/clinical/departments/neurosurgery/faculty/asthagiri-page

 

Anxiety is getting the best of me.  (I wrote this last week and I am feeling better J Hot Yoga, an awesome 10 mile run, sleep, a moving message at church and a weekend with my family can change everything!)

School has started.  Extracurricular activities have started.  Lots of chauffeuring.  Add in the day-to-day routines and Jacob’s multitude of appointments and we have a stress cocktail.  I’m praying, running, biking and I’m eating clean (mostly).   I’m trying to take care of myself.  I’m trying to get in time to play with Gavin, talk with Jacob and Brie and have a conversation with my TD at least once every few days, but at the end of the day I feel lost in the craziness of our lives.  I am tired and sleep seems like distant memory, a past activity I once enjoyed.

So that’s the picture, how I’m feeling this afternoon and why I haven’t written an update lately.  Ginger, was my first paragraph considered complaining?  Guess I’m failing at that goal as well.  Moving forward...

Gavin started VPK and he is going to school every single day, 9-12, at Killearn Kids Preschool.  He loves it!!  They have a special class pet in his room, a ball python named Monty!!  Yes!  Gavin has held him.  I’ve seen the photos!!   The past few weeks, his class has been learning about the farm, the letters F and H, had a delicious farm breakfast, a visit from a horse name Montana and I’m pretty sure there’s a hayride in the near future.  Gavin is writing his name clearly and learning early math concepts.  He has weekly homework, too, that I’m positive the big kids did not have in pre-K.  Most importantly though, Gavin is learning that God made him wonderfully and loves him no matter what.  Devotion time is one of Gavin’s favorite daily activities.  He comes home singing songs of  praise about Jesus. 

Gavin also started Trousdell Jet and Superman gymnastics classes and CSA Skeeters soccer.  I wasn’t able to go to G’s first soccer practice, but TD said he did awesome.  He listened to his coach and was a force on the field.  That’s my little runner!!  I’ve probably mentioned this before, but G ran all four of the Gulf Winds Track Club Summer Trail Series one-mile races.  I look forward to seeing G practice soccer this week.  In fact, I’m passing up going to see Third Day, who I love, because G cares that I wasn’t at his practice and I don’t want him to feel that way again!  Gavin is the newest Trousdell Superman, the name of the four year old boy gymnastic class he is taking.  They did drills this week and hung on the rings.  I know that Gavin can’t wait to cross the monkey bars.  This class is going to make that happen sooner rather than later!  After Superman, Gavin and I went to the Mommy and Me Jets class.  It’s the same class we did over the summer and it’s more fun than instruction, though he did learn a few fundamentals.  Each class is only 30 minutes long, so I was trying to make an hour out of our trip to the gym.  It’s going to be a lot of fun and it does burn a lot of energy, thankfully. 

I guess I should mention that Gavin had his last two cavities filled this week, too.  Yes, it was somewhat embarrassing that my four year old had to have 5 cavities filled over the last two and a half years, but I've been told it isn't uncommon and isn't a reflection on how well we are brushing G’s teeth.  No, he doesn't drink juice either!!   Thank goodness for Care Credit too!  Just saying.

Who’s next?  Thomas, my love.  I want to give a huge shout out to my husband for completing his first triathlon and doing awesome in it.  Our goal was to finish in under 2:00 hours and he beat his goal by 20 minutes!!  It was a beautiful morning with our amazing family and friends and Ft. Desoto was the perfect place for us to compete.  TD is continuing to train in hopes to do another tri before the winter months, but nothing is set in stone yet.  TD also started a new job, which he loves.  He’s moved to the Capitol and is embracing his new position.  For those of you who don't know TD well, he is ridiculously smart, easily learns new things and could go anywhere and do any job.  I truly believe he is meant to do great things.  With that said, in 2005, when he graduated from FSU, he stayed in Tallahassee to be with us, with Jacob, Brie and me. He took a job at the state that didn't require travel and allowed him to be here to help me with Jacob's needs and for whatever the kids and I might need.  He has sacrificed many dreams and built new ones for the greater good of his family.  I'm really excited about TD's new position.  The State has been good to him and our family, but they are super lucky to have TD in my humble opinion.  

We recently joined an organic share group, Annie’s Organic Buying, and I am really enjoying seeing (and eating) what TD comes up with to utilize our organics.  We have had some interesting meals and I love it!!  For anyone who doesn’t know, TD is the chef in our home, and he is a darn good one!!  I should have known this nine years ago when he cooked for me the first time.  Yummy chicken parmesan.  Yes, I still remember!!

Should Jacob be last?  Nope.  Jacob is enjoying school.  This makes me so happy to write.  Being able to go off campus for lunch and seeing all of his friends are the main reasons, but I am excited to report Jacob is doing really well in Chemistry.  Yes, that is the big news of the day.  A “B” average in Chemistry is really something for him to be proud of and I am proud of him.  Ever since his schedule came in the mail over the summer, he’s worried about chem and geometry.  I don’t have the mid-9 weeks grade for geo yet, but I believe Jason would have texted me by now if there were any concerns. Jacob is taking culinary arts as well.  I can’t wait to see what he’s going to cook for us by year’s end!  We received the good news, too, that Jacob’s hearing hasn’t changed since August 2012.  It is extremely positive news that his left ear hearing is stable even though that tumor has grown!  I will be honest and say that significant hearing loss in his right ear would make his surgery next month a tad easier to swallow, since the surgery will leave Jacob deaf on the right side.  Maybe not easier, but it seems like it would. 

Surgery has been scheduled at Shands for October 22^nd  with Dr. William Friedman and Dr. David Pincus.  I have really struggled (am struggling) with this surgery, the place, the doctors and the decisions that have come along with it, but I won’t go into details.  Just know that this is keeping me up at night and consuming much of my daily worries.  I know many of you have been faithfully praying over this for me.  I thank you.  I am patiently waiting to know we are in the place God wants us to be.  If God chooses not to share this with me, I do know that He will keep Jacob safe regardless. I will update my specific prayer requests when surgery gets closer. 

Update: Jacob and I met with his primary doctor on Friday to treat Jacob’s cold and to talk to her about the option of going to UVA with Dr. Asthagiri.  She has written a letter of referral to our health insurance.  I would really like for Jacob to have this surgery with his NF2 doctor.  It may not be possible, but I had to continue to try until all roads were exhausted.  I have nothing negative to say about Shands.  Dr. Asthagiri is Jacob’s NF2 doctor, naturally our first choice would be to go to him.  He has a different plan for surgery than Shands also and it is the procedure we prefer, if it is possible to have a preference regarding such a scary surgery.  Now we wait and continue to pray God put Jacob in the best medical teams hands. 

My beautiful Brie and I shared our first 5K!! A few weeks ago we participated in The Color Run Tallahassee.  We had so much fun.  I was joined with my running bestie, my fabulous MRTT ladies, my MOPS mamas (so proud of them!!) and Brie’s family from Georgia on her dad’s side.  It was the longest 5K of my running history (01:08), more of a walk, but the most fun for sure.  I was happy to have Brie with me and The Color Run is the happiest 5K on the planet J.  Brie’s sophomore year is in full swing.  She is taking upper level classes and seems to be working hard to keep up her normal “B” and above grades.  I know she is struggling in history though.  Everyone always anxiously anticipates progress reports, which will come home next week.  We shall see!! 

Last weekend was really exciting for Brie and for our family.  Brie won sophomore homecoming queen for Leon High School, and she was gorgeous!!  For a girl who self-proclaims to not have a lot of friends, she must have a few friends since the sophomore queen is elected by her peers.  No words can express how beautiful Brie was on the football field in front of all of our family and her school.  Leon won the game and Brie finished off weekend with the homecoming dance Saturday night. 

As for me, like I said in my first paragraph, I am keeping busy.  I am enjoying race season starting back up and excited about my first half marathon since March in Atlanta in two weeks with Tammy and lots of other MRTT mamas.  I’m loving riding my bike and really enjoyed my first triathlon last month.  It was really special to be able to do it with TD.  We are hoping to do Tri the Rez, but I’m not sure that is going to happen.  Origami Owl has been slow this month, but I have an event in October that I’m looking forward to getting out there and helping women tell their stories.  I am proudly working on filling 300 race bags for Grayson’s Tough As Nails 5K in November.  I’ve received great responses from vendors and seeing others generosity just warms my heart.  MOPS started back and I love the fellowship and friendships I have there.  I recently attended a new bible study group, which I think is really going to be good for me.  It’s a branch off from our running group, so I feel like God’s plan of bringing us all together is working out. Again, I’m worried about my daddy too.  He has been on a continuous health issue rollercoaster for the last 18 months.  Most recently had more tests done and his doctor once again believes he has leukemia.  He is headed back to the oncologist to hopefully get the care he needs this time!  I really need him to be ok!!  

So, there’s my update!  I edited this blog post this morning, I wrote it a week ago, and removed several things that have been heavy on my heart, but I think it is best to keep them private for now. Obviously if I kept putting off posting, I wasn’t ready.  I really just want to be thankful for my many blessings, give God the glory in all things good and bad and hand over my worries to Him!  

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!!