Wednesday, July 25, 2012

Surgery Schedule

Surgery Scheduled

Jacob's spinal surgery has been scheduled for August 7, 2012 at 8:00 am at the National Institute of Health with Dr. Ashok Asthagiri.  The procedure includes a spinal lapendectomy and the doctors will be removing two spinal nerve tumors found at C7 and just below.  The tumors are believed to be schwannomas and are not inside the spinal cord, but on the nerves outside the cord. "Extramedullary lesions are located within the small space between the surface of the spinal cord and the bony wall of the spinal canal."  We have been told that these two tumors are large and have Jacob's spinal cord extremely displaced into an "S" appearance.  Jacob and I will be leaving Tallahassee on August 5th and are scheduled to return August 19th.  The real length of our stay could be (and with all my being I pray it will be!) shorter depending on how surgery goes and how well he tolerates pain afterwards.  The amount of rehab Jacob will need is also unknown at this time, but we have been told he will need physical therapy for spinal rehab. 

Over the last two weeks Jacob has remained in good spirits.  Life has moved forward as it always does. The day after Jacob and I returned from NIH, Brie, Sierra and I headed to Orlando to spend the day at Universal Studios (a belated birthday request from Brie). We had a great time riding rides and seeing shows.  I’m happy to report I had the highest score on the Men In Black ride, but I was too chicken to ride the RockIt!  Brie and Sierra rode it twice, once in the morning and once after dark.  Evidently it really does rock!  That evening we were able to spend a few hours with Rachel, Joe and Fran, which was nice.  Thank you, Rachel, for the tickets!  That night I was so exhausted from waking up at 5:00 am to drive to Orlando and from all of the excitement from the park.  Even though I could’ve slept standing up, I was happy to have a very sweet hotel room at the Coco Key Resort on International Drive. 

The next day, the girls and I enjoyed the morning at the Coco Key water park and did a little junk store window shopping.  We were back home in Tallahassee in time for the One Direction "Year in the Making" movie on Nick (as you can tell, I could not contain my excitement).  While we were gone the boys enjoyed some dude time, going fishing out at the Joe Budd Aquatic Center, eating an extra large Momo’s pizza (which, if you have not had the pleasure, is the biggest pizza I’ve seen), and building a birdcage (well, starting a birdcage… who knew that a 6ft x 6ft x 3ft cage could be so time consuming to build? ;) ).

The following week, Jacob got his braces back on and went to Lighthouse day camp.  Brie finished her second week of Hope PE class (now on week three, studying for her final tomorrow).  Gavin had a great week while we were gone with his Pop Dana, getting a haircut, going to the Jr. Museum, to play group and going grocery shopping, I’m sure! Since then we have been to the water park at Jack McLean, multiple park play dates, off to ride his bike and the sprinkler splash pad at Southwood.  We may try skating this Friday if he's ready.  Hehe. 

I was SO excited that my finches laid eggs, but now I’m not so excited. They aren't taking care of their little hatchlings and my heart is breaking.  Anyone a bird expert?  My books didn't prepare me for some of this, and I blatantly ignored my husband’s warnings that raising birds isn’t always a joyful task! He was right for once. Who knew?!

Yesterday morning I took Jacob to the American Cancer Society ROCK (Reaching Out to Cancer Kids) Camp send off party. Even though Jacob doesn't have cancer, his battles are very similar and he fits in well with this group of kids.  So, Jacob is off to Boggy Creek for the next week.  I love it there and I know Jacob does too, so I am excited for the fun he is going to have this week.  I know I have blogged about it before, so I will just share the link for any of you who haven't seen it :)

I’d also like to share the link to the Facebook page I started for Jacob, and to bring general awareness to NF2.  We don't have to be "friends" for you to join, just ask to join and I will approve you.  I know I have this blog and a Caring Bridge page, but, in an effort to spread the word, I am going to use all means available to me. :)

Team Jacob G! Battle NF2

So, as we prepare for Jacob's surgery, both mentally and emotionally, I will be calling on all of you to pray for us - for Jacob, for his doctors, for all the NIH staff and for our family we have to leave behind in Tallahassee.  I am praying, running, blogging and probably driving everyone crazy, but I promise it is all for the good of not going crazy myself (maybe that's why TD started back on his P90X…).

Lastly, I have a proud moment to share... I ran my first 13.1 miles!  Here is my short story! :)

Thank you all, again.  I will be updating soon.

One of the slides at the Coco Key Resort
Jaws is no longer a ride at Universal

Random, I know, but BJ sent this cabinet to me
the week we were gone to DC and I painted it
mocha when I got home, put all my favorite
things in it and LOVE it :)

Jacob is part of the "Troop 23" who worked on this project!
Proud of him for participating in this!
(the weekend before NIH and the weekend after)
Jack McLean Pool Park
Sprinkler Splash Pad at Southwood
Jacob and Gavin at Camp ROCK send off party.
Gavin and I went to the Antique Car Museum yesterday.

Thursday, July 12, 2012

Thursday 7-12-12

Suffering from constant off and on dizziness today was a bit difficult to get through (hope I'm not getting what Jacob had).

Jacob and I are safely home and very happy to be in the company of the fam. I missed Gavin, Brie and TD so much. Four days feels like forever!

This morning was another early 5:30 am wake up, to clean our room, check out and head into DC. Jacob and I wanted to see the Tomb of the Unknown Soldier, Kennedy's Eternal Flame and Arlington Cemetery. We were thrilled that Savannah and her mom, Becky, were going to venture out with us for the morning. We met at 7:30 am and took the bus to the train to the memorials. It was Becky's and Savannah's first time on the Metro... and during rush hour. Piece of cake. I always feel like I've accomplished a lot when I reach my destination after riding the Metro. I think the feeling was mutual today. We first walked to the Women's Memorial. I didn't even know it existed. I liked it very much. One of the plaques with dog tags hanging said something along the lines of not all woman wore pearls in the 60s. I think women are tough as nails, but I just can't wrap my head around being in a war, in any position. Walking through the hall and being among their awards, photos and uniforms made my eyes well with proud tears of being a woman. I will go back when we have more time and sign the guest book and I'd love to take Brie to write something for the wall of notes.

The Arlington Cemetery is huge. We should've bought tickets and rode the tram around to see everything, but, being a bit determined to not complain about being hot, the hills being enormous and my luggage being heavy among the graves of our country's bravest, we walked. We saw Kennedy's Eternal flame and JFK's cross. Since Jacob had been so sick yesterday, we never got to see Casey. About the time we were melting and not sure which road was going to take us to the Tomb of the Unknown Soldier, Casey, Gracie and Lacey appeared... and with a map (and with a car and homemade spelt bread :))!

The Tomb of the Unknown Soldier (it has no set name if I understood correctly) it was breathtaking in a way I can't explain. The Army Officer, dressed in his dress blues carrying an old rifle, M-14 maybe, radiated with pride and honor. Fortunately, we were there at the right time to see the changing of the guard ceremony. Again my heart pounded and I felt overcome with emotions.

The tomb reads "Here Rests In Honored Glory An American Soldier Known But To God"

Savannah really wanted to see the Pentagon, so Casey was nice enough to drive us by it and around DC. I know that I want to visit Martin Luther King Jr's memorial and Thomas Jefferson's. Casey told us about some other neat places too for next time.

Right at noon, just as planned, Casey dropped us all off at Ronald Reagan National Airport. We said our goodbyes and headed to check-in, through security and onto our direct flight home. First direct flight for us and I loved it!! Will do that again if I have a choice.

Jacob is feeling a little better. Last night him and Savannah went walking, played pool, air hockey and cooked after dinner dinner. He was in bed early and slept good. It was tiring for him to walk a lot today, but he manned up.

The next few weeks we are going to work out the ins and outs of his surgery next month, try to get the 8lbs he's lost back on him and get him to work on his posture.

Tomorrow I will be back on the road at 5 am to take Brie and Sierra to Universal and the CoCo Key resort water park.

As life goes on....

PS: Thank you to all my friends and family for your kind support yesterday. Reading your texts and posts meant a lot. Thank you for your reminders that God is with us.

I realize I was (am) a rotten child of God, who was devastated for things not going the way I want them to. Seeing that God is always good isn't always easy to see, but I will keep looking and praying for God to "open the eyes to my heart."

Wednesday, July 11, 2012

I wonder if I haven't prayed hard enough, long enough, often enough or said the right words. I was wrong about how I would feel if we were given bad news today. I write this somberly.

We spent an hour today with Dr. Asthagiri. Due to the fact that I am emotionally exhausted I will keep this very short and to the point.

Jacob's tumors have continued to grow on the Afinitor. His right VS is 3mm larger and the left VS is 1.5mm larger. His C7 tumor that has been of huge concern has grown and is out of room. We don't have the choice to wait any more. It has to be removed. The tumor a few levels below the C7 tumor has substantially grown as well and is now compressing Jacob's cord in the other direction. His spinal cord looks like a "S" right now. It will be removed at the same time. Jacob will be having them both removed in August. Probably the week before his 16th birthday. Happy sweet 16. I knew it was coming, that Jacob was running out of time, I guess I was just hoping for a miracle.
Once again we were reminded that we have to decide what to do about the right we sacrifice Jacob's hearing in the right side for facial nerve preservation?

Going to concentrate on getting Jac through spinal surgery first.

What the heck am I going to do with $14,000.00 worth of medication?

I will write more later

July 2012 NIH Trip Day 1 & 2

Day 1, Travel Day

Busy Day 1… done!

With the help of TD and Mr. Dana, everything that needed to happen, well, happened. TD took Jacob to Kids Corner at TMH for his blood work this morning at 7:30 am while I took Brie to Leon High school to see about her summer classes.  Jacob's blood work was for Dr. Amy Smith to make sure his system is still reacting well to the Afinitor.  Brie's Hope PE class is a three week summer class that will take the place of a full year course.  This way she wont have to sweat during regular school… Really?!

Gavin tried to sleep in this morning.  It was hard to wake him up and say goodbye for almost four days, especially when he doesn't understand why he can't come with us this time.  He’s super excited that Pop Dana is here to play with him though!

Papa Ken and Nana picked Jacob and me up around 8:30 and took us to the airport.  They stayed and kept Jacob and I company until a security guard noticed an unattended duffel bag that had been left outside the restroom where we were sitting.  Another 15 minutes or so passed and the bag remained unattended.  We cumulatively decided it was best for us to remove ourselves from the area.  TSA had been called and the bag was going to be taken care of soon. What idiot leaves their bag alone in the middle of the airport floor for 30 minutes and doesn't come back to get it?  With that said, security was a breeze today, or as G would say, "Easy peesy." We still had to take our shoes off and unload all of stuff for the scanners, but I didn't get felt up by TSA this morning. Yay! Tallahassee now has one of the new x-ray machines like many of the larger airports.  My bracelets were the only think that showed up on it, but I didn't have to take them off, so no sweat! Our flight was scheduled to leave at 11:01 am.  What's up with the one minute?  Stupid.  Anyway, our flights were very full, but uneventful.  There were a few scary moments thanks to thick, beautiful clouds, but the skies were gorgeous.  We listened to a few very unhappy toddlers which I attributed to karma.  Believe it or not, it made me miss G more.  We arrived at DCA on time, at 2:30 pm, and easily made our shuttle at 3:40.  It wasn't that hot here today.  Jacob and I went outside for a bit this afternoon for J to play basketball.  Our groceries came late, around 7:20 pm, and they didn't bring Jacob's soda, but considering it is the worst thing we have to complain about today, I feel lucky.  We are in an odd room at the Children's Inn, but I'm over that too and won't waste my time complaining. I’m just thankful to be here, safe. 

Heading to bed. Tomorrow will be a long day. Peace!

Day 2, Blood work, CT scan, Endo Clinic, MRIs

The Not-So-Awesome Awesome NIH Day

I just signed up for my first RunDisney! I’m SO excited to be doing the Disney Princess Half Marathon 2013! Yes, it is a little over six months away, but I am thrilled.  And yes, I will be sporting a tutu and princess tiara at 38 years old!!  Thank you, Mrs. Gina, for my early Christmas present! 

So today was an awesome day.  As I sit and reflect I can definitely say today was an awesome day, even though it didn't start off well, and the fact that Jacob is in bed sick right now makes me sad, but, overall, today has left me happy.

We started at 6:00 am this morning with the Afinitor wake up call.  We were in the Pediatric Oncology clinic by 7:20 for labs that were ordered for Wednesday, but I had talked them into doing them Tuesday morning so Jacob could have them done while he had his port accessed.  I put numbing cream on Jacob's port and his left inner elbow for the IV and port access.  So, getting his port access placed and getting his IV put in was easy.  Jacob decided to have both done so he wouldn't have to wear an IV in his arm all afternoon.  His port can't handle CT contrast and that's what was scheduled first thing at 8:00 am. 

The first problem we ran into was that the NIH computer wouldn't read Jacob's ID, so his information couldn't be printed and all the tubes of blood taken couldn't be labeled.  Jacob's nurse asked if we needed labs for Jacob's CT.  I assumed they weren't needed since Jacob wasn't even due to have blood drawn until tomorrow.  We went on to CT reception thinking he was good to go and Peds would figure out the computer issue.  After two hours in CT, we realized Jacob wasn't good to go, and after several conversations with different staff, Jacob was sent back to Peds clinic for more blood work.  I was very concerned about being late to Jacob's 9 am appt with OP3 regarding his CT scan results.  I was informed that they would be there all day and there was no hurry.  Um, Jacob didn't have all day.  He still needed a scan, have his clinic, eat and get to MRI by 1:30 for his non-flexible, three-hour imaging.  

Jacob was finally done with CT and we were up in OP3 at 11:30.  CT wouldn't take out Jacob's IV, so after a long discussion with Jacob, it was decided that I would take it out.  Needed an easy button for that, thank goodness.

Ok, ready for the first reason today was awesome?  Jacob's CT scan of his adrenal area is ALL CLEAR! Thank you, God!  Dr. Patel said the only thing on the scan that even suggests that Jacob had surgery is the evidence of clippings from the surgeons that were in there.  They asked Jacob about how he was feeling, eating, etc.  The doctor talked to us about a few other peri-spinal tumors that showed up on the CT that were higher up, looked at his surgery scars and, an hour later, we were on our way.  

Second reason today was awesome?  My online friend, Susan, and her beautiful infant daughter, Ella, drove all the way from Philadelphia to have lunch with us and sit with me during Jacob's long brain and spine MRI!  She arrived at 12:30.  Perfect timing.  When you're online or texting with someone, you can take time to think about what you want to write and hide your emotions.  I'm honest in my blogs and in my texts, online posts, etc., but meeting someone in person who you think very highly of can be very intimidating.  As soon as Susan hugged me all my worries faded.  I felt comfortable, like we were old friends.  She is truly beautiful, smart and funny.  What's the girl equivalent of a bromance?  [My husband suggested a homance… such a punk.] I know that's what it sounds like, and that's ok.  I am so moved that Susan would take the time to drive three hours just to sit with me in hopes to be a positive distraction during a hard afternoon.  Well, it worked!  We enjoyed a chatty lunch. Even Jacob joined in and seemed extremely comfortable as well, meaning he had no filter! lol.  After taking Jacob to MRI, we spent the afternoon just talking and playing with Ella.  I have forgotten how little, and how precious, a two month old is!  Ella was a perfect little angel.  I can't wait to see them again! 

Jacob came out of MRI at 4:40 in great spirits. He said he slept the first two hours from the brain scan and for the last hour for his spine, the tech was cutting up and being funny.  We rushed back to Peds to have his port access removed, flushed and get heparin.  Then we rushed to medical records to request Jacob's images be placed on a disc for me to pick up tomorrow.

[A lot of rushing, I know.] We were all done at the Clinical Center at 5:15.

Back at the Children's Inn, we were thrilled to see Rebecca and Savannah had arrived from Chicago.  They were the reason we asked to come to NIH this week.  Jacob and Savannah played games and hung out.  I enjoyed talking with Rebecca on the back deck until it started to pour rain, [like it would pour anything else?] and look forward to seeing them again tomorrow.  I piddled in the art room and did a few miles on the treadmill and bike in the exercise room.  Jacob is already in bed, though, with a very upset stomach.  I'm guessing it is from all the dye/contrast, not drinking enough water (I've been pushing it, though) and too much pizza, frozen coffee and fast food the past few days. 

I'd like to add also that we met another NIH patient, Jodi, today who is part of the NF2 study.  We didn't get to talk to her long since we were running back to CT, but I was so happy to meet her and we hope to see her again.  I really need to learn sign language.  She was so happy and patient with me - she did a great job of reading my lips, but I would like to be able to communicate easier.  Vaughn, I hope you have your dry ease board with you tomorrow!!  Looking forward to seeing him too :)

In the morning, my life-long friend Casey, who lives in DC now, is going to visit us.  So I’m hoping no matter the news Dr. A gives us it will still be another great day, another day full of amazing people. 

Whoa, as I was trying to proof this, Jacob just sat up in bed and puked everywhere.  Bed, carpet, wall, himself.  Was so much fun to clean up.  Yuck.  Yuck Yuck.  Feel like I need another shower now, but I'm too tired.  Yuck. 

Real quick Wednesday morning update - Jacob threw up all night. He has had some soup and fluids this morning and gone back to bed. Thank goodness our clinic isn't until 1:30. He said he's tired and his stomach still hurts but he feels a little better.


Was able to sit outside in 84 degree weather....

Susan, Ella and me :)

Did a little bunny watching yesterday

Jacob's favorite way to travel, asleep

Tuesday, July 3, 2012

There’s no sugar-coating it. Today was a rough day with the kids. My three year old is confused about who the adults are in our house and my teenagers would like to sleep the entire summer away without participating in anything family-oriented, not to name names or anything… Putting the petty things aside, I’m mentally preparing for our trip to NIH this Monday. I worry about Jacob daily, but the anxiety I feel before Jacob's tests, clinic appointments and results is hard to swallow. I started feeling it today, knowing that throughout the week it will only get worse. Packing on Sunday is always the hardest, then having to face my fear of flying, finally getting the big ol’ slap in the face dose while going through the big NIH gates. See? Already a mess…

I’m excited about running with Tammy M tomorrow morning and then meeting friends at the Museum of Florida History. I’m really looking forward to seeing one of my old girlfriends and her little girls (that aren’t so little anymore) for dinner tomorrow night. I can't wait for our Fourth of July activities either! A beach trip to St. George for the beachy, redneck SGI Fourth Parade, Tom Brown Park fireworks, and spending time with TD and Maks :). I have a movie date with my Beck on Thursday that will be a nice girls outing. Even with all these great activities, I know the NF2 reality will be here fast. Jacob and I will be traveling without Gavin this time. My awesome father-in-law will be up from St. Pete for the week to stay with Gavin and Brie while TD is at work. I am very thankful that Mr. Dana is retired from firefighting and is so kind to help us whenever we are in need. For those of you who offered to have a play date while we are away in DC, I'm cashing in!

Monday will be our travel day. Jacob's appointments start Tuesday morning with CT scans, both with and without contrast, of his chest and abdomen area to evaluate where the para-adrenal gland mass was removed. I guess they’re looking to make sure they got most of it, and that it has healed correctly and hasn't grown back. It was growing crazy fast for a schwannoma prior to removal, doubling its size to 12 cm over a five month period (which was odd). After Jacob's CT, we will go see Dr. Kebebew to get the CT results and hopefully he will tell us about the pathology of the mass they removed in January, confirming it was a schawanomma. Jacob will have his three hour (loooonnnng!) MRI of the brain and spine, with and without contrast, on Tuesday afternoon. I'm not sure why they aren't doing a delayed brain MRI like they usually do… Maybe it’s just once a year and they did it in January… I will have to ask that tomorrow. Wednesday, Jacob will have blood work and see Dr. Asthagiri in the afternoon. This is different because Dr. A always sees his patients on Thursday mornings, but the sooner I get the results of Jacob's MRIs, the better. I’m very worried, watching Jacob's balance get worse, that one of his VSs (bilateral vestibular schwanommas or hearing nerve brain tumors) have grown from the already-large 2 and 3 cm. I am sick over thinking about his C7 spinal tumor and, well, most of you know the rest. Dr. A will look at how Jacob's foot is healing from where the tumor was removed in January. We will also get the pathology report of that tumor. Jacob also wants to talk to him about having a few tumors removed from his right forearm.

Please pray for us! Pray for our safe travels! Pray for strength and patience for Jacob and me! Pray for good results and that the Afinitor is doing magic on Jacob's tumors - ALL of them. Pray we are beating NF2!!

I'm saying prayers for my daddy too, who I love more than any words can express. He hasn't been feeling well, not himself for a while now and we are worried about him. He will be having a lot of tests coming up to find out why his white blood count has been so high for so long.

I will keep you all updated about Jacob! Thank you, as always, for your continued care and support.

I hope you all have a wonderful holiday! Happy Fourth of July! God bless our beautiful country!