As of yesterday, Jacob has been on Lapatinib (Tykerb) for a month now. His dose was increased on November 15 and his labs have looked great for the last four weeks. However…
Last week, Jacob started to complain about numbness in his abdomen area, some other random pains in his leg and feet and left hand cramping and weakness. We made a trip to Orlando on Monday to see Jacob's oncologist team at Arnold Palmer. Jacob's pediatric neuro oncologist, Dr. Smith, believes the numbness in Jacob's abdomen is not from the new drug, but rather from a large, 5 cm schwannoma in his lower spine area. I’m sad that this slow growing tumor is now causing Jacob discomfort, but relieved that he can continue on the Lapatiniband we can hold on to hope in this new treatment (numbness in the hands and feet is a common side effect from Tykerb). Dr. Smith offered Jacob the option to start a drug called Neurontin to see if it would control the numbness or to wait and see if anything changes. Jacob chose to wait. He isn't having pain in the area and doesn't want to add more drugs to his current cocktail. He answered the way I would have, so I was happy about that. I think he feels better knowing that his organs are working as they should and he isn't in any immediate danger.
Jacob did well on his neuro physical exam. He’s showing weakness in his left hand, but it doesn't appear to be any worse than it was right after surgery. I’ve been in contact with Dr. A and Jacob's OT and we have plans in motion for more aggressive hand therapy and another hand splint. We were also informed that scar tissue could be forming from his August surgery, causing changes in his left hand. Need prayers for Jacob's left (and only working) hand.
Jacob has a wicked rash from the Lapatinib on his face, chest and back. We have a prescription for it and have put it in to be filled at our compound pharmacy. Hoping it will give Jacob some relief from that.
For now Jacob will continue with weekly labs and continue to pray for no new negative changes and stable results in January at NIH.
Thank you all for your continued prayers and support.
Wednesday, November 28, 2012
Friday, November 16, 2012
As most of you know our family took Gavin to Disney World's Magic Kingdom recently. I didn't blog about it because it would be a book! and well we've been busy with other things :) We all had a great time and Gavin loved it so much.
I do want to share a descriptive essay that Brie and TD wrote together. It isn't the final project because TD had his hands in this draft a little too much, but all the ideas were Brie's and all of the initial descriptions. TD just added the small details. I really enjoyed it and wanted to share it on our blog.
Happy Reading!!
Arriving at the Magic Kingdom Monorail station at Disney
World in Orlando, Florida, I felt the rush of the past 3 months of excitement
come over me! Walking down the ramp to
the green gates of Magic Kingdom with my family was a blur, with all of us
staring in awe at the fall decorations, waiting for the gates to open. We arrived around 7:40, leaving us 10 minutes
of agonizing wait before the Magic Kingdom Opening Ceremony at 7:50. It was chilly, windy and overcast because
Hurricane Sandy was out in the Atlantic Ocean, so there weren’t nearly as many
people at the opening gates as I thought there would be. Or maybe we just arrived first and had front
row seats, so I just didn’t notice.
Either way, the train brought the characters for the opening and the
next 10 minutes went by like the blink of an eye.
I do want to share a descriptive essay that Brie and TD wrote together. It isn't the final project because TD had his hands in this draft a little too much, but all the ideas were Brie's and all of the initial descriptions. TD just added the small details. I really enjoyed it and wanted to share it on our blog.
Happy Reading!!
Brie
November 6, 2012
Period 2
Crowds of People Couldn’t
Take the Magic Away!
And then it happened.
The gates opened. Once the park
opened and all the people rushed through the gates like cattle, my stress level
went through the roof! We hadn’t really
made a plan, but Heather, my stepdad’s cousin’s wife, explained that we needed
to go to the kid rides first, so off we went to ride Peter Pan and It’s A Small
World in the very back section called Fantasyland. We were able to get on both without waiting
at all. The ride wait clock said “5
minutes,” but I think was just because it took 5 minutes to walk to the front
of the ride! Although the Fantasyland
section started filling up, Magic Kingdom was big enough that the people that
rushed through the gates were spread out and the morning seemed like we could
do anything we wanted without a wait!
As the day went on, however, the crowds of people grew
rapidly. Walking down Main Street around
noon, back towards the gates to meet the Disney Princesses in the Theater, people
rushed in like waves crashing against the buildings around us. I get nervous in such large crowds,
especially with trying to keep up with my family and make sure my baby brother
was ok, so I tried focusing on other things to alleviate some of my anxieties. I
was able to relax a little and I began taking in a whole new side of Disney,
one that the eye just couldn’t capture.
The assorted smells tickled at my nose.
The candy shops smelled of savory candy apples and bitter dark chocolate
bars topped with innumerable concoctions of caramel, chocolate and other
goodies. The concession stands smelled
of greasy hot dogs and fries. The
restaurants smelled more of gourmet food, but equally delicious! There were terrible smells as well. As we were all bunched together, some people
thought it was a good day to not wear deodorant. The stench singed my nostril hairs, making
them into little stubbles. Different
noises beat at my eardrums, too. The mix
of foreign languages was muffled, but loud enough to hear sounds like
gibberish. It was all enough to cause a
headache! Each corner I turned there was
a young child with glossy eyes and puffy eyelids; tears staining their angelic
faces. The blood circulation on my
finger was slowing down as my baby brother Gavin tightened his grip around my
finger.
I found myself back in reality, shuffling through the crowds
of people, feeling again as if we were cattle being rounded up, standing, or
more like pushing, shoulder-to-shoulder, touching each other. As it grew later in the day, the crowds grew
in every direction, left, right, up and down.
We managed to watch several shows, fighting off people who insisted on
encroaching on our personal space! Even
with such people, the Dream Along With Mickey show at Cinderella’s Castle and
the Celebrate a Dream Come True parade that we watched in Frontierland were
simply magical!
The darkness finally arrived. Normally I love nighttime, but I was dreading
the fact that the millions of other people, or so it seemed, were probably not
going to do much better in the dark! Waiting
for food, getting pushed and pulled in many directions at once, having to tell
an old woman to please remove her shoe from my butt, all of these things could
have put a damper on any other event I’ve been to. But not the Main Street Electrical Parade,
and certainly not the Wishes Nighttime Spectacular! Floats covered in lights, designed to make
scenes from movies like Alice in Wonderland and Peter Pan were amazing. The Cheshire Cat even made an appearance,
disappearing and reappearing in vibrant pinks and purples. Cinderella’s Castle was a bright and shiny monument
against a pitch black landscape, changing from violet to pistachio green to
fuchsia pink and peacock blue. Light up
balloons and bubbles from the bubble guns filled the air around us just as Tinkerbell,
wrapped in lights, flew out of the castle spire. This was the moment we had been waiting for
the entire day! Our faces lit up, just
as the sky did, as the most amazing fireworks that can ever be seen made this
moment seem so… magical! Not so surprising
given that we were at the most magical place on earth!
The post-parade crowds, shoving and stepping could have affected my mood, but I didn’t even notice. No one did. We were in such awe from the efforts of Disney to create such a wonderful place that it didn’t matter. It didn’t even register in my memories! And although every single soccer mom in the park rammed me in the ankles with her bulky, devilish stroller on the way out, they could not take away the magic that Magic Kingdom shared with us!
The post-parade crowds, shoving and stepping could have affected my mood, but I didn’t even notice. No one did. We were in such awe from the efforts of Disney to create such a wonderful place that it didn’t matter. It didn’t even register in my memories! And although every single soccer mom in the park rammed me in the ankles with her bulky, devilish stroller on the way out, they could not take away the magic that Magic Kingdom shared with us!
I updated my running blog today, www.Runningforlemonade.wordpress.com . This week was a great week in my running world. I posted pictures and a race recap. I am sharing my paragraph about Jacob on here also.....
In other good news, Jacob, who I mentioned above, is handling his new chemotherapy drug well. Jacob has Neurofibromatosis Type 2 and he’s battling brain and spinal tumors. He’s been on Lapatinib for two weeks. This is the third chemo drug we’ve tried in 18 months. Jacob is having weekly labs to make sure his body is continuing to function normally while on the drug. For the last two weeks his labs have returned normal. This is awesome news!!! The initial side effects only lasted a few days. We just upped his dose last night, so I’m expecting a few bad days ahead, but hoping they won’t be too bad. One more step to having him on the full dose is good news too! I’m always a fan of progress.
Happy Weekend!!
In other good news, Jacob, who I mentioned above, is handling his new chemotherapy drug well. Jacob has Neurofibromatosis Type 2 and he’s battling brain and spinal tumors. He’s been on Lapatinib for two weeks. This is the third chemo drug we’ve tried in 18 months. Jacob is having weekly labs to make sure his body is continuing to function normally while on the drug. For the last two weeks his labs have returned normal. This is awesome news!!! The initial side effects only lasted a few days. We just upped his dose last night, so I’m expecting a few bad days ahead, but hoping they won’t be too bad. One more step to having him on the full dose is good news too! I’m always a fan of progress.
Happy Weekend!!
Friday, November 9, 2012
I keep pushing "I
can see clearly now" into the musical spot in my brain, attempting to keep
the negative out! It's gonna be a bright sunshiney
day!!
It's almost Friday again
(well, now it IS Friday) and I’m way overdue for providing a Jacob
update. The past several weeks have been extremely
hectic. We've had both the fun and the not so fun. I’d planned
to write this post this morning, after a nice long run while TD was at Donuts
for Dad with Gavin, enjoying a few minutes of quiet. But… I was
pulled over this morning for speeding, 46 in a 35 (not true!), and the officer
was very ugly to me. I was treated like a criminal and it really hurt my
feelings. I wish they would put more effort into finding the criminals
who broke into our van and robbed me of my purse and camera! So, I’m
trying to de-stress from that right now, but didn't
want to put off writing an update any longer.
The reasons I haven't
gotten around to an update are mostly positive ones! When Jacob and I
returned home from Orlando, TD and I left the next day for a weekend in
Apalachicola for my first half marathon and to celebrate our anniversary.
The kids stayed in Tallahassee with their grandparents and had a great
time. When we got home from being at the coast, we took our
first family trip to Magic Kingdom and Islands of Adventure. Both
weekends were awesome and exhausting! Totally worth it though.
Enough intro. As
of today, Jacob is feeling better. It's been three weeks since
his last oncology clinic appointment in Orlando where he also had
an MRI, heart echo and heart EKG. His heart tests returned with
great results. Heart looks healthy.
For you medical types, shortening fraction and ejection
fraction, which are the things we are most concerned with, are normal
:). Echocardiograms
often pick up trivial valvular flow issues.
His showed trivial tricuspid regurgitation which
is not clinically significant. He has
normal jet velocity (or flow) from that valve. We will continue to follow the
echo to watch the SF and EF. The MRI results were
as to be expected. According to the Arnold Palmer radiologist, Jacob's
MRI showed growth in many of his tumors. They were comparing it
to November 2011 and they really didn't tell me anything I didn't already
know. They did labs and detailed neuro and
physical exams. Everything checked out for him to start Lapatinib,
so we left with a script and an appointment for a month from then.
Getting the drug
was not as easy. It took two weeks to get it , along with a lot of
frustration, but we succeeded and he started it on Tuesday, October
30. It has to be taken on an empty stomach, so we are
adjusting back to the 5:30 am wake up to make sure he can still eat before
school. 750 mg twice a day is the full dose that most NF2 patients
on Lapatinib are taking, but because it can be
very harsh for the liver, heart and stomach, Jacob was started on 500 mg twice
a day. The first few days Jacob was very tired and didn't feel
well. He stayed home from school last Thursday and had a bad stomach ache
Friday night. Since then, though, he seems to be feeling
normal. We had a great weekend and he is back at the school grind this
week. Tuesday, Jacob had labs to see how his body is responding to
the new medication and everything checked out.
He will continue on. He will go weekly for
labs to check his immune system and liver functions. At the end of the
month we will return to Arnold Palmer for another EKG and clinic. At that
time, I believe they will increase his dose. I really want him on the
full dose as soon as it is safe for him. We really
need something to stop his tumors!!
Speaking of school,
report cards came out and both kids have some new goals for this 9
weeks. I met with Jacob's teacher, changed his schedule a little bit and
hope he will be more successful this time around. He seems to be working
harder this week. Appreciating the little things!
We did get some really
great news this week from Jacob's physical therapist, Amy. She said Jacob
has regained almost all of his previous range of motion in his neck. She
said his balance is a bit better and the scar area seems less tight.
Progress!
We also got our NIH
dates - January 7th - 11th.
And the NF2 battle
continues.
Thank you for
reading.
Tuesday, November 6, 2012
Running for the Bay
I finally had a chance to write about TD and my sixth wedding anniversary and my first official half marathon. If you're interested in reading about check it out here...
http://runningforlemonade.wordpress.com/2012/11/06/running-for-the-bay-and-sixth-wedding-anniversary/
http://runningforlemonade.wordpress.com/2012/11/06/running-for-the-bay-and-sixth-wedding-anniversary/
Thursday, October 11, 2012
Hi family and friends,
I wanted to tell everyone about a new blog that I've started writing
(and that TD is editing :) ) about running and the other outdoor
adventures currently inundating our lives! Gavin is trying his feet at
running so there will be stories about him too (not just me!). So, if
you enjoy reading Learning to Make Lemonade and are interested in
reading other branches of our lives, please check out my new blog at:
www.RUNNINGforlemonade.wordpress.com
You can follow my blog by entering your email address in the box and
confirming. By joining, you will help keep me motivated and
accountable!
Thanks so much,
Tammy
I wanted to tell everyone about a new blog that I've started writing
(and that TD is editing :) ) about running and the other outdoor
adventures currently inundating our lives! Gavin is trying his feet at
running so there will be stories about him too (not just me!). So, if
you enjoy reading Learning to Make Lemonade and are interested in
reading other branches of our lives, please check out my new blog at:
www.RUNNINGforlemonade.wordpress.com
You can follow my blog by entering your email address in the box and
confirming. By joining, you will help keep me motivated and
accountable!
Thanks so much,
Tammy
Saturday, September 22, 2012
Still Would Have Chosen You By Terri Banish
If before you were born, I could have gone to heaven and saw all the beautiful souls
I still would have chosen you
If God had told me, "This soul would one day need extra care and needs"
I still would have chosen you
If He would have told me, "This soul may make your heart bleed"
I still would have chosen you
If He had told me, "This soul would make you question the depth of your faith"
I still would have chosen you
If He had told me, "This soul would make tears flow from your eyes that could fill a river"
I still would have chosen you
If He had told me, "This soul may one day make you witness overbearing suffering"
I still would have chosen you
If He had told me, "All that you know to be normal would drastically change"
I still would have chosen you
Of course, even though I would have chosen you, I know it was God who chose me for you
If before you were born, I could have gone to heaven and saw all the beautiful souls
I still would have chosen you
If God had told me, "This soul would one day need extra care and needs"
I still would have chosen you
If He would have told me, "This soul may make your heart bleed"
I still would have chosen you
If He had told me, "This soul would make you question the depth of your faith"
I still would have chosen you
If He had told me, "This soul would make tears flow from your eyes that could fill a river"
I still would have chosen you
If He had told me, "This soul may one day make you witness overbearing suffering"
I still would have chosen you
If He had told me, "All that you know to be normal would drastically change"
I still would have chosen you
Of course, even though I would have chosen you, I know it was God who chose me for you
Friday, September 21, 2012
September Summary
Hollachaboy! Whatever that means. For some reason it came to me when I sat down to write this post. A few weeks ago TD and Gavin paid a visit to Garnet and Gold and spent time with FSU Baseball Hall of Fame inductee John-Ford Griffin, who was in town for the induction and to kick off the new Hollachaboy campaign. TD said they had some quality time with JFG, who stayed late to hang out, and also pointed out that Guy Moore, owner of Garnet and Gold, was a class act. I did see the slogan written on the Subway sign today, so I guess it’s gaining ground!
Any who.
In the big scheme of things, it’s been a really great month. A month ago, Jacob was one week post-op spinal surgery. A mess. This week he went back to school. Yes, Jacob finally started 10th grade!! Thank goodness. I love spending time with him, but mama needs her time! A gazillion things to do and a bored 16 year old can often be a not-so-perfect combination, especially when I’m making him get up at 9:30 am, which, by the way, Jacob thinks is entirely too early. I was beginning to feel like a dictator, spending my afternoons switching him to do his school work. OK, the switching is just in my dreams, lol. With that said, Jacob seems to have a great set of teachers who care about him being successful. I met them all last night (well, almost all of them…) at Leon's Open House and I think it is going to be a good sophomore year. Jacob's coach for Team Sports’ portable is way on the other side of the football field and it was raining... Jacob is working to get caught up on his work (for everything other than Biology) and will just add that to the extremely long “To do” list.
In other Jacob news, he had his physical therapy evaluation this past Monday and the treatment plan has been sent to NIH for approval. He should be starting weekly PT next week. He continues to work hard to strengthen his hands and retain/improve his balance in occupational therapy once a week.
And now for the drum roll please... Jacob has regained all feeling in his right hand and arm!! Thank you, Lord! We are praying hard for the numbness to subside on the left side, in his strong arm and hand. I was very surprised to hear he had regained this feeling, learning this during an intake at his oncology appointment last week. Last Monday, Jacob, Gavin and I made another trip to Orlando to see his brain tumor group for clinic on Tuesday.
With Jacob out of school, we were able to leave early, after Gavin's dentist appointment. Being told my three year old has extremely clean teeth, but two soft spots that need to be filled for $420 started my morning off just right! Humana Dental, you better come through. We just had our transmission replaced in our van, so I was nervous about that as well, but we made it without any hitches to Orlando by early afternoon. On the way down I asked Jacob if he would like to venture further south and visit Give Kids The World Village (GKTW). Jacob and I hadn't been there to revisit since October 2008 and I thought Gavin would love it. If you aren't familiar with GKTW, it’s the amazing place that Make A Wish children and families stay when they are having their wishes granted for Disney World. Any Wish child can return at any time. Jacob was a Wish kid, TEN years ago next month! The village has undergone some "upgrades", like a new life-sized Candy Land playground and sprinkle fountains by the pool, but the warmness of the grounds and the people haven't changed at all. The boys and I played with the model trains, attempted to play dinosaur putt putt, had dinner in the Gingerbread Cafe, and ice cream in the Parlor. One of my favorite places there is the Castle of Miracles. Jacob's star from 10-12-2002 brightly shines on the ceiling, engulfed in a sea of other courageous kids' stars and memories that stay with you for a lifetime. Gavin went trick-or-treating and made a mask, a wand and a light saber (or lifesaver as it is so affectionately known in our house). We saw a really cool mad scientist show. Who knew you could create a huge liquid eruption by adding Mentos into soda? Gavin was highly impressed. I loved being there. I loved being able to be there with my Wish child ten years after his wish had been granted, seeing him laugh and being proud that he's still fighting!!
[This is the timeout that no one can see, me wiping my tears away and finally stopping crying! TD would say, “Like cotton.”]
After that heartfelt paragraph... I’m back from dealing with a small emergency in the back of our house (the big kids' rooms). I have decided I should market a shirt that says, “Yes, I've gained a few pounds. I’m a mom to teenagers & a preschooler whose behaviors force me to consume large dosages of cookies and cream ice cream and I need more time to run it off and regain my sanity.” I guess I wouldn't make any money since that is way too long to fit on a shirt.
Where was I? Orlando. Yes. We had a wonderful visit to GKTW. Our room was lovely at the Ronald McDonald House and I slept so good on the Tempurpedic bed. It would have been perfect if Gavin hadn't had an accident while we were sleeping. We aren't sure what’s going on with that, but he's having some night time potty regression. Any suggestions? He easily fully potty trained by the time he was two years old and went on to wear pull ups at night until right before his third birthday this past April. Nothing in his schedule or drinking habits has changed. He has always consumed large amounts of liquid all day, but usually will get up to potty during the night. Maybe he is just tired and wants to sleep more than five hours at a time. I sure would like to. So, after multiple nights of accidents, the RMH included, I have been putting pull ups on G to sleep at night. It is very sad to hear him say, "But I AM a big boy." I have him help with changing all of our bedding because he still co-sleeps with us most nights, but it is so much work and we can only do so much. G even chose to sleep in his bed a few nights last weekend to avoid having to wear a pull up. We’re working on progressing.
But back to my story. Because I had to change extra mattress pads at the RMH and give G a shower before leaving, Jacob was a few minutes late to clinic. Jacob had his normal weight check and blood draws done. He was super grumpy because he was fasting and they were taking their time with accessing his port. Mrs. Mo (one of our fantastic nurses) did take Jacob to get snacks for him and G right before the crew came in to see us. We saw Dr. Smith, Hillary and Michelle. Jacob's surgery and recovery was discussed. We talked about putting Jacob on lapatinib and its risks. Jacob's heart, lungs and liver will have to be watched closely. He will have to have a heart echo and EKG before starting the drug as well as a baseline MRI. We also decided that it would be best to wean Jacob off of the tegratol he is currently on for seizure control to Keppra. In studies where patients are taking lapatinib, it is shown to be ineffective in 74% of patients also on tegratol (and a few other seizure drugs that are processed through the liver). Avastin was back on the table as well. If Jacob was having more hearing loss I would consider it, but I feel like we should go a new route and save that until he is out of other options. I did ask about lapatinib and Avastin together and rapamycin and Avastin as a combo, but right now we are looking at starting with the lapatinib alone. So, now we wait for Dr. Smith's office to talk to Dr. Andrade (Jacob's neurologist at Shands) to get the approval to switch seizure meds and the best weaning/introduction procedure. Then the tests will be scheduled. Jacob is a long way off from a new treatment, but I'm feeling like a break might be really good for him. I just hope his tumors agree!
Before leaving, Hillary addressed Jacob's weight loss from surgery. We talked about good fats and foods high in protein and good calories and she prescribed Jacob an appetite stimulator. Jacob weighed 112 lbs last Tuesday. Being almost 5'10 you can imagine how thin he is right now. He took the “hungry hippo” pill a few days last week and this past weekend, but hasn't this week because it makes him sleepy and I don't want him sleeping in class. It was a great celebration when Jacob got on the scale last night and it said 118 lbs. Six pounds gained in eight days and six more pounds to go!! He was even able to wear some new school clothes today that he got before surgery. They’ve been too big for him.
Lastly, Jacob's audiogram and ABR testing are continuing to show slow hearing loss, but nothing drastic. His right side voice recognition is down 20% since last year, but it is to be expected. In other medical news, I am not pursuing the radiation route right now. I'm exhausted from these huge decision, Jacob isn't sure what he wants and there isn't a lot of positive support for radiation in the NF2 community. Dr. Pincus thinks it would be a good choice and says Jacob needs to do it now. Dr. A and Dr. Brackman from NIH and HEI don't recommend it. I’m just not sure. That discussion is hereby postponed until further notice!
Everything else is moving right along. In the last entry I wrote about family fun, I was getting ready to run the Red Cross 5K at Tom Brown. I beat my personal best race time, finishing in 31:04, although I know the clock said 30:50 when I crossed the finish line (No, I will NOT let it go, TD! Those seconds do matter!). My goal is to finish a 5K in under 30:00. One day. I’m still in training for the Running for the Bay Half Marathon next month and have a 10K next weekend. Although I’ve been discouraged about finding more time to run, I’m still in love with running. I’m making a lot of friends through Moms Run This Town and learning so much. I think it is so cool that I’ve discovered a new love in my late 30s. My love of running is pouring over onto Gavin, who I believe would’ve been born running if he could have. G has X clocked miles so far for the Kids Run This Town September practice challenge, which was just to run your miles in age. He is well over 3 miles. Gavin even held his own on a 5.41 mile hike at beautiful Torreya State Park this past Saturday.
It wasn't an easy breezy hike either. Growing up in Tallahassee, many of my friends loved camping and hiking at Torreya. Jacob has been there with Boy Scouts, but I had never been. I had no idea what I was missing. It is absolutely beautiful. The park is named for the rare Torreya tree that only grows on the river bluffs there. We saw deer, a gopher tortoise, gorgeous huge butterflies, and a million different spiders. I really loved all the sounds and the blankets of ferns covering the ground. We started at the Gregory House that overlooks a deep ravine down to the Apalachicola River. The trees are enormous and covered in colorful fungi. We walked up and down and around following a map that we picked up at the entrance. We also were on our first geocaching adventure, which, if you’ve never heard of it, is AWESOME! OK, side note time, written by the captain…
So Tammy and I downloaded this geocaching app from Geocaching.com. It’s like a real-world treasure hunt where people all over the world hide little “caches” in places that, at a minimum, contain a logbook for you to write down your information. The app provides the coordinates for caches all over, and there are several in Torreya. We chose one and decided to stick with it, not really knowing what to expect. We told Gavin we were on a treasure hunt, which was obviously great motivation for him to keep hiking! He kept telling us he wanted a car from the treasure box (we read that many geocaches have small items that you can take as long as you leave something of equal or greater value in its place). We were worried that he was going to be disappointed. Anyways, we hiked nearly 4.5 miles before we reached Weeping Ridge trail. The .3 mile trail led us to a beautiful little waterfall (well, more like a dripping faucet, but it was cool!), and closer to our treasure! We had to come up from the Weeping Ridge a little, but after a few minutes of the GPS showing that we were within a few feet of our coordinates, we found it! A tough Tupperware box concealed beneath a fallen tree! We did it! We opened the box and found a trove of little trinkets, and sure enough, an old blue Matchbox car for our little pirate hiker! We signed the logbook after reading some entries, placed a cigar in the box for the next person (because we forgot to bring something to put in, and didn’t really know what to bring in the first place… and because that was all we had in my hunting pack!), and reassembled the cache’s secret lair! We hiked out a very satisfied crew! We look forward to our next geocaching adventure, but for now, back to the story … [end captain’s log]
I secretly loved it too, especially the Weeping Ridge, and even though I have a few suspicious bites, I came home and haven't had a huge break out yet which makes me very happy!
Now that the weather is cooling off, we will have more outside adventures. Jacob, Gavin and I met some friends and had a nice morning last week at the Jr. Museum. They have cool lemurs right now, but even more exciting, they have a new pig and she is super cool! Yes, the pig definitely trumps the lemurs! Trust me! Or don’t and go see for yourself. I guess the huge hog that has been there forever passed, but they did a fantastic job replacing him. This new little pig (well, I say little, but she's bigger than G) put on a big show for us! She was running, spinning and snorting. She has dog toys in her pin and a shower she likes to just stand under. Most adorable thing ever! She will definitely be a favorite of mine.
Thanks to Stephanie and Jerry, TD was finally able to take his dad to an FSU game! Not that the Savannah State game was great, but TD said it was nice to go to a game and not have a single bad thing to say about your team! Jacob and Gavin had a good time too, and everyone enjoyed the blowout so much, the rain couldn’t even bother them! They looked great all decked out in FSU gear, running to the van in the POURING rain! G got to do his chop and is practicing his kickoff noise and his chants on a regular basis at home. Go Noles!
If time permitted, here were the other topics that deserve mention. They are now relegated to list format because I cannot give them the time they demand (coincidentally due to one of the items on the list, the One Week Boutique!):
Brie started ballet AND jazz and is loving dance at school. She has her Aunt Becky's teacher from when she was in hs.
Gavin's new classes, a “Mommy & Me” and a “Music & Drama”
One Week Boutique
Jacob back at scouts, getting thrust back into popcorn sales and the Christmas tree lot!
SUPER excited about all of the stuff coming up in October, including a much needed vacation!!
On second thought, here they are. For all of the times I say I can’t find the time…
MOPS started back this month and I really like the new small group of women I have been placed with this year. I’m looking forward to another year of new friendships and growing the awesome friendships I am so lucky to already have from previous years. Brie is coming home everyday from school and dancing for me. She loves her dance class at school and started back at Hannah Bergstrom Dance studio last week for jazz. She is also taking a ballet class this year. I'm so excited for her (and myself)! I love to watch her dance. Brie has been asked to the Homecoming dance and we will be dress shopping this weekend. Jacob went back to scouts this week as well and hopefully will slowly start back with all of his normal activities. Please be on the lookout for his annual Boy Scout Popcorn sale email to purchase popcorn to support his activities and his Troop 23. Gavin started two new classes this week, a “Mommy and Me” music and art class and a Music and Drama class. TD and I aren't impressed with either, but we will give it another chance next week. Guess if G is happy, we should be, right?
On a very serious note, in the process of writing this post, a friend of mine, Tammy, whose precious son, Connor, has NF2, received bad news from NIH this week. Please put Connor and his family in your prayers. They have some big and scary decisions to make and it is really weighing heavy on my heart, so I know Tammy's heart is breaking right now. Her faith is strong, but NF2 can really break us down. Please lift her in prayer and ask God to keep her close during this difficult time.
Give Kids The World
http://www.gktw.org/
Really neat article from Weird Florida on Torreya State Park
http://www.weirdus.com/states/florida/fabled_people_and_places/garden_of_eden/index.php
The offical Geocaching website
http://www.geocaching.com/
A few of my favorite pictures from September:
Any who.
In the big scheme of things, it’s been a really great month. A month ago, Jacob was one week post-op spinal surgery. A mess. This week he went back to school. Yes, Jacob finally started 10th grade!! Thank goodness. I love spending time with him, but mama needs her time! A gazillion things to do and a bored 16 year old can often be a not-so-perfect combination, especially when I’m making him get up at 9:30 am, which, by the way, Jacob thinks is entirely too early. I was beginning to feel like a dictator, spending my afternoons switching him to do his school work. OK, the switching is just in my dreams, lol. With that said, Jacob seems to have a great set of teachers who care about him being successful. I met them all last night (well, almost all of them…) at Leon's Open House and I think it is going to be a good sophomore year. Jacob's coach for Team Sports’ portable is way on the other side of the football field and it was raining... Jacob is working to get caught up on his work (for everything other than Biology) and will just add that to the extremely long “To do” list.
In other Jacob news, he had his physical therapy evaluation this past Monday and the treatment plan has been sent to NIH for approval. He should be starting weekly PT next week. He continues to work hard to strengthen his hands and retain/improve his balance in occupational therapy once a week.
And now for the drum roll please... Jacob has regained all feeling in his right hand and arm!! Thank you, Lord! We are praying hard for the numbness to subside on the left side, in his strong arm and hand. I was very surprised to hear he had regained this feeling, learning this during an intake at his oncology appointment last week. Last Monday, Jacob, Gavin and I made another trip to Orlando to see his brain tumor group for clinic on Tuesday.
With Jacob out of school, we were able to leave early, after Gavin's dentist appointment. Being told my three year old has extremely clean teeth, but two soft spots that need to be filled for $420 started my morning off just right! Humana Dental, you better come through. We just had our transmission replaced in our van, so I was nervous about that as well, but we made it without any hitches to Orlando by early afternoon. On the way down I asked Jacob if he would like to venture further south and visit Give Kids The World Village (GKTW). Jacob and I hadn't been there to revisit since October 2008 and I thought Gavin would love it. If you aren't familiar with GKTW, it’s the amazing place that Make A Wish children and families stay when they are having their wishes granted for Disney World. Any Wish child can return at any time. Jacob was a Wish kid, TEN years ago next month! The village has undergone some "upgrades", like a new life-sized Candy Land playground and sprinkle fountains by the pool, but the warmness of the grounds and the people haven't changed at all. The boys and I played with the model trains, attempted to play dinosaur putt putt, had dinner in the Gingerbread Cafe, and ice cream in the Parlor. One of my favorite places there is the Castle of Miracles. Jacob's star from 10-12-2002 brightly shines on the ceiling, engulfed in a sea of other courageous kids' stars and memories that stay with you for a lifetime. Gavin went trick-or-treating and made a mask, a wand and a light saber (or lifesaver as it is so affectionately known in our house). We saw a really cool mad scientist show. Who knew you could create a huge liquid eruption by adding Mentos into soda? Gavin was highly impressed. I loved being there. I loved being able to be there with my Wish child ten years after his wish had been granted, seeing him laugh and being proud that he's still fighting!!
[This is the timeout that no one can see, me wiping my tears away and finally stopping crying! TD would say, “Like cotton.”]
After that heartfelt paragraph... I’m back from dealing with a small emergency in the back of our house (the big kids' rooms). I have decided I should market a shirt that says, “Yes, I've gained a few pounds. I’m a mom to teenagers & a preschooler whose behaviors force me to consume large dosages of cookies and cream ice cream and I need more time to run it off and regain my sanity.” I guess I wouldn't make any money since that is way too long to fit on a shirt.
Where was I? Orlando. Yes. We had a wonderful visit to GKTW. Our room was lovely at the Ronald McDonald House and I slept so good on the Tempurpedic bed. It would have been perfect if Gavin hadn't had an accident while we were sleeping. We aren't sure what’s going on with that, but he's having some night time potty regression. Any suggestions? He easily fully potty trained by the time he was two years old and went on to wear pull ups at night until right before his third birthday this past April. Nothing in his schedule or drinking habits has changed. He has always consumed large amounts of liquid all day, but usually will get up to potty during the night. Maybe he is just tired and wants to sleep more than five hours at a time. I sure would like to. So, after multiple nights of accidents, the RMH included, I have been putting pull ups on G to sleep at night. It is very sad to hear him say, "But I AM a big boy." I have him help with changing all of our bedding because he still co-sleeps with us most nights, but it is so much work and we can only do so much. G even chose to sleep in his bed a few nights last weekend to avoid having to wear a pull up. We’re working on progressing.
But back to my story. Because I had to change extra mattress pads at the RMH and give G a shower before leaving, Jacob was a few minutes late to clinic. Jacob had his normal weight check and blood draws done. He was super grumpy because he was fasting and they were taking their time with accessing his port. Mrs. Mo (one of our fantastic nurses) did take Jacob to get snacks for him and G right before the crew came in to see us. We saw Dr. Smith, Hillary and Michelle. Jacob's surgery and recovery was discussed. We talked about putting Jacob on lapatinib and its risks. Jacob's heart, lungs and liver will have to be watched closely. He will have to have a heart echo and EKG before starting the drug as well as a baseline MRI. We also decided that it would be best to wean Jacob off of the tegratol he is currently on for seizure control to Keppra. In studies where patients are taking lapatinib, it is shown to be ineffective in 74% of patients also on tegratol (and a few other seizure drugs that are processed through the liver). Avastin was back on the table as well. If Jacob was having more hearing loss I would consider it, but I feel like we should go a new route and save that until he is out of other options. I did ask about lapatinib and Avastin together and rapamycin and Avastin as a combo, but right now we are looking at starting with the lapatinib alone. So, now we wait for Dr. Smith's office to talk to Dr. Andrade (Jacob's neurologist at Shands) to get the approval to switch seizure meds and the best weaning/introduction procedure. Then the tests will be scheduled. Jacob is a long way off from a new treatment, but I'm feeling like a break might be really good for him. I just hope his tumors agree!
Before leaving, Hillary addressed Jacob's weight loss from surgery. We talked about good fats and foods high in protein and good calories and she prescribed Jacob an appetite stimulator. Jacob weighed 112 lbs last Tuesday. Being almost 5'10 you can imagine how thin he is right now. He took the “hungry hippo” pill a few days last week and this past weekend, but hasn't this week because it makes him sleepy and I don't want him sleeping in class. It was a great celebration when Jacob got on the scale last night and it said 118 lbs. Six pounds gained in eight days and six more pounds to go!! He was even able to wear some new school clothes today that he got before surgery. They’ve been too big for him.
Lastly, Jacob's audiogram and ABR testing are continuing to show slow hearing loss, but nothing drastic. His right side voice recognition is down 20% since last year, but it is to be expected. In other medical news, I am not pursuing the radiation route right now. I'm exhausted from these huge decision, Jacob isn't sure what he wants and there isn't a lot of positive support for radiation in the NF2 community. Dr. Pincus thinks it would be a good choice and says Jacob needs to do it now. Dr. A and Dr. Brackman from NIH and HEI don't recommend it. I’m just not sure. That discussion is hereby postponed until further notice!
Everything else is moving right along. In the last entry I wrote about family fun, I was getting ready to run the Red Cross 5K at Tom Brown. I beat my personal best race time, finishing in 31:04, although I know the clock said 30:50 when I crossed the finish line (No, I will NOT let it go, TD! Those seconds do matter!). My goal is to finish a 5K in under 30:00. One day. I’m still in training for the Running for the Bay Half Marathon next month and have a 10K next weekend. Although I’ve been discouraged about finding more time to run, I’m still in love with running. I’m making a lot of friends through Moms Run This Town and learning so much. I think it is so cool that I’ve discovered a new love in my late 30s. My love of running is pouring over onto Gavin, who I believe would’ve been born running if he could have. G has X clocked miles so far for the Kids Run This Town September practice challenge, which was just to run your miles in age. He is well over 3 miles. Gavin even held his own on a 5.41 mile hike at beautiful Torreya State Park this past Saturday.
It wasn't an easy breezy hike either. Growing up in Tallahassee, many of my friends loved camping and hiking at Torreya. Jacob has been there with Boy Scouts, but I had never been. I had no idea what I was missing. It is absolutely beautiful. The park is named for the rare Torreya tree that only grows on the river bluffs there. We saw deer, a gopher tortoise, gorgeous huge butterflies, and a million different spiders. I really loved all the sounds and the blankets of ferns covering the ground. We started at the Gregory House that overlooks a deep ravine down to the Apalachicola River. The trees are enormous and covered in colorful fungi. We walked up and down and around following a map that we picked up at the entrance. We also were on our first geocaching adventure, which, if you’ve never heard of it, is AWESOME! OK, side note time, written by the captain…
So Tammy and I downloaded this geocaching app from Geocaching.com. It’s like a real-world treasure hunt where people all over the world hide little “caches” in places that, at a minimum, contain a logbook for you to write down your information. The app provides the coordinates for caches all over, and there are several in Torreya. We chose one and decided to stick with it, not really knowing what to expect. We told Gavin we were on a treasure hunt, which was obviously great motivation for him to keep hiking! He kept telling us he wanted a car from the treasure box (we read that many geocaches have small items that you can take as long as you leave something of equal or greater value in its place). We were worried that he was going to be disappointed. Anyways, we hiked nearly 4.5 miles before we reached Weeping Ridge trail. The .3 mile trail led us to a beautiful little waterfall (well, more like a dripping faucet, but it was cool!), and closer to our treasure! We had to come up from the Weeping Ridge a little, but after a few minutes of the GPS showing that we were within a few feet of our coordinates, we found it! A tough Tupperware box concealed beneath a fallen tree! We did it! We opened the box and found a trove of little trinkets, and sure enough, an old blue Matchbox car for our little pirate hiker! We signed the logbook after reading some entries, placed a cigar in the box for the next person (because we forgot to bring something to put in, and didn’t really know what to bring in the first place… and because that was all we had in my hunting pack!), and reassembled the cache’s secret lair! We hiked out a very satisfied crew! We look forward to our next geocaching adventure, but for now, back to the story … [end captain’s log]
I secretly loved it too, especially the Weeping Ridge, and even though I have a few suspicious bites, I came home and haven't had a huge break out yet which makes me very happy!
Now that the weather is cooling off, we will have more outside adventures. Jacob, Gavin and I met some friends and had a nice morning last week at the Jr. Museum. They have cool lemurs right now, but even more exciting, they have a new pig and she is super cool! Yes, the pig definitely trumps the lemurs! Trust me! Or don’t and go see for yourself. I guess the huge hog that has been there forever passed, but they did a fantastic job replacing him. This new little pig (well, I say little, but she's bigger than G) put on a big show for us! She was running, spinning and snorting. She has dog toys in her pin and a shower she likes to just stand under. Most adorable thing ever! She will definitely be a favorite of mine.
Thanks to Stephanie and Jerry, TD was finally able to take his dad to an FSU game! Not that the Savannah State game was great, but TD said it was nice to go to a game and not have a single bad thing to say about your team! Jacob and Gavin had a good time too, and everyone enjoyed the blowout so much, the rain couldn’t even bother them! They looked great all decked out in FSU gear, running to the van in the POURING rain! G got to do his chop and is practicing his kickoff noise and his chants on a regular basis at home. Go Noles!
If time permitted, here were the other topics that deserve mention. They are now relegated to list format because I cannot give them the time they demand (coincidentally due to one of the items on the list, the One Week Boutique!):
Brie started ballet AND jazz and is loving dance at school. She has her Aunt Becky's teacher from when she was in hs.
Gavin's new classes, a “Mommy & Me” and a “Music & Drama”
One Week Boutique
Jacob back at scouts, getting thrust back into popcorn sales and the Christmas tree lot!
SUPER excited about all of the stuff coming up in October, including a much needed vacation!!
On second thought, here they are. For all of the times I say I can’t find the time…
MOPS started back this month and I really like the new small group of women I have been placed with this year. I’m looking forward to another year of new friendships and growing the awesome friendships I am so lucky to already have from previous years. Brie is coming home everyday from school and dancing for me. She loves her dance class at school and started back at Hannah Bergstrom Dance studio last week for jazz. She is also taking a ballet class this year. I'm so excited for her (and myself)! I love to watch her dance. Brie has been asked to the Homecoming dance and we will be dress shopping this weekend. Jacob went back to scouts this week as well and hopefully will slowly start back with all of his normal activities. Please be on the lookout for his annual Boy Scout Popcorn sale email to purchase popcorn to support his activities and his Troop 23. Gavin started two new classes this week, a “Mommy and Me” music and art class and a Music and Drama class. TD and I aren't impressed with either, but we will give it another chance next week. Guess if G is happy, we should be, right?
On a very serious note, in the process of writing this post, a friend of mine, Tammy, whose precious son, Connor, has NF2, received bad news from NIH this week. Please put Connor and his family in your prayers. They have some big and scary decisions to make and it is really weighing heavy on my heart, so I know Tammy's heart is breaking right now. Her faith is strong, but NF2 can really break us down. Please lift her in prayer and ask God to keep her close during this difficult time.
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| Tammy and Connor You can read Connor's story at: http://www.caringbridge.org/visit/connorobrien |
Give Kids The World
http://www.gktw.org/
Really neat article from Weird Florida on Torreya State Park
http://www.weirdus.com/states/florida/fabled_people_and_places/garden_of_eden/index.php
The offical Geocaching website
http://www.geocaching.com/
A few of my favorite pictures from September:
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| The boys after their haircuts and lunch out. |
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| Jacob and Brie on their way to a Leon football game |
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| Go NOLES!! |
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| G getting his teeth cleaned, oh fun! |
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| Miss Marry Bunny |
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| Add caption |
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| Rosalie and G |
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| On one of our emergency potty pull overs on I-10 we found this injured butterfly. We put him in our garden and he was gone in the morning :) |
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| First Geocaching Treasure found! |
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| Little Tortoise |
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| Weeping Ridge |
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| Can you see the hidden treasure? |
Wednesday, August 29, 2012
Short update 08.28.12
Another week has past. In the words of the oh-so-wise Will Ferrell, “Keep on truckin’!”
Brie is now officially a freshman in high school, and, even though her first week was a bit rough, she has a schedule filled with the best classes and great teachers and she is adjusting. The past two days have been good days for her at school and I'm really happy my "It will get better" pep talks are turning out to be the truth.
Gavin started school last week too and is a happy big PreK3 student! Gavin hasn’t missed a beat and loves his Tuesday/Thursday schedule! When I picked him up today, he said, "It's a really good day, Mom." His class is doing an All About Me unit and getting to know each other. Last week they had a visit from Dora and went on a star hunt, but we didn't get the whole story on that one. Today he said he really enjoyed devotional and I know he loves being on the big playground. I am also proud to brag that Gavin ran in his first cross county 3K (1.86 miles) race this past Saturday, the Miller Landing Madness, which benefited the Second Harvest Food Bank. Gavin finished in 26.53 minutes and only walked and complained a little. That's a long way for a little guy! TD and I loved running next to him and cheering him on (though I imagine there were some other parents there that might’ve thought we were a little too vocal about making sure he wasn't last!). Kids RUN This Town has challenges coming up in September and October and Gavin is going to be ready!!
Yesterday started a busy week for Jacob, who continues to do well and move forward in his healing. Jacob started back with school work (at home) this week and even took out a light load of recycling yesterday! He went to hand occupational therapy Monday afternoon and he will continue OT at Progressive Pediatrics once a week for the next three months for his left hand. Jacob is still coping with numbness, but his strength and range of motion are good. Today he had his braces adjusted and tomorrow he will have his teeth cleaned. Thursday is Nana's birthday. Happy Birthday, Mama! Jacob and I will have a little outing to see her. Friday will be a big day. Jacob will have his hearing tests, an audiogram and ABR testing done at Audiology and Associates here in Tallahassee and we are praying for good results and no hearing loss! I am excited about the three day weekend. I'm always happy to have TD home an extra day, but I will miss Jacob and Brie so much this weekend. Jacob will be making his first trip away from home Friday evening to see his dad and his family for the first time in over a month. Jacob said he is ready! TD, Gavin and I will be watching football, GO FSU, and eating. I have a huge One Week Boutique mess I need to work on and Tammy and I will be running on Monday, bright and early, in a 5K race to support our local Red Cross Hurricane relief. Wish us luck!!
I will let y'all know how the hearing evaluation goes and keep you posted on how Big J Willy is doing. We head to Orlando on September 10th to talk about Jacob starting Lapitinib. You can read about it here http://en.wikipedia.org/wiki/Lapatinib . It is the only drug being used in the NF2 community that Jacob hasn't tried yet.
Never giving up!!!
Brie is now officially a freshman in high school, and, even though her first week was a bit rough, she has a schedule filled with the best classes and great teachers and she is adjusting. The past two days have been good days for her at school and I'm really happy my "It will get better" pep talks are turning out to be the truth.
Gavin started school last week too and is a happy big PreK3 student! Gavin hasn’t missed a beat and loves his Tuesday/Thursday schedule! When I picked him up today, he said, "It's a really good day, Mom." His class is doing an All About Me unit and getting to know each other. Last week they had a visit from Dora and went on a star hunt, but we didn't get the whole story on that one. Today he said he really enjoyed devotional and I know he loves being on the big playground. I am also proud to brag that Gavin ran in his first cross county 3K (1.86 miles) race this past Saturday, the Miller Landing Madness, which benefited the Second Harvest Food Bank. Gavin finished in 26.53 minutes and only walked and complained a little. That's a long way for a little guy! TD and I loved running next to him and cheering him on (though I imagine there were some other parents there that might’ve thought we were a little too vocal about making sure he wasn't last!). Kids RUN This Town has challenges coming up in September and October and Gavin is going to be ready!!
Yesterday started a busy week for Jacob, who continues to do well and move forward in his healing. Jacob started back with school work (at home) this week and even took out a light load of recycling yesterday! He went to hand occupational therapy Monday afternoon and he will continue OT at Progressive Pediatrics once a week for the next three months for his left hand. Jacob is still coping with numbness, but his strength and range of motion are good. Today he had his braces adjusted and tomorrow he will have his teeth cleaned. Thursday is Nana's birthday. Happy Birthday, Mama! Jacob and I will have a little outing to see her. Friday will be a big day. Jacob will have his hearing tests, an audiogram and ABR testing done at Audiology and Associates here in Tallahassee and we are praying for good results and no hearing loss! I am excited about the three day weekend. I'm always happy to have TD home an extra day, but I will miss Jacob and Brie so much this weekend. Jacob will be making his first trip away from home Friday evening to see his dad and his family for the first time in over a month. Jacob said he is ready! TD, Gavin and I will be watching football, GO FSU, and eating. I have a huge One Week Boutique mess I need to work on and Tammy and I will be running on Monday, bright and early, in a 5K race to support our local Red Cross Hurricane relief. Wish us luck!!
I will let y'all know how the hearing evaluation goes and keep you posted on how Big J Willy is doing. We head to Orlando on September 10th to talk about Jacob starting Lapitinib. You can read about it here http://en.wikipedia.org/wiki/Lapatinib . It is the only drug being used in the NF2 community that Jacob hasn't tried yet.
Never giving up!!!
Sunday, August 19, 2012
God is Good!
For those of you who aren't on Jacob's Facebook Team page and haven't seen my pictures and short status updates on there, I am so sorry it has taken me so long to provide you with an update. I can't believe tomorrow will be post-op day 14. Time has really gotten away from us these past few days… well, I guess it’s been a week now. I remember the day so well, almost 18 months ago, when it was brought to my attention that Jacob had a tumor on his C7 spinal nerve that was of great concern. I can recall the dread of each of the subsequent MRI results and I anticipated with great anxiety the time surgery would come and what the aftermath could be. I’m full of information about the surgery and the last two weeks of Jacob's recovery. I could write a small novel I'm sure, but when I sat down this afternoon, I tried to think of the most important things I wanted to share with everyone.
First and foremost, Jacob is doing so well! It is a miracle. Simply amazing. Jacob is off "heavy" pain medication and although he is still uncomfortable at times, he is mostly pain free. He is showering, dressing, feeding himself and walking short distances comfortably. Jacob had his 19 staples painlessly removed on Thursday at Southeastern Plastic Surgery. Southeastern Plastic Surgery has a gorgeous office, extremely pleasant staff and Jacob had one of the prettiest nurses named Leslie, and it is always nice to see anyone in the Rosenberg family! Leslie had Jacob chatting away as she removed his staples. Jacob said he didn't feel a thing. Thank you, Dr. Laurence Rosenberg! His incision looks super cool and is healing perfectly. Jacob, other than being bored, is in great spirits and ready to tackle occupational therapy for his hands next week. He is still aggravated about the numbness in his hands and upper arms, but considering what could have been, we are extremely grateful for his surgery results.
God is good and he heard our prayers. Your prayers. Jacob is a walking testament of God answering prayers. I cried tears of joy for my son this morning in church instead tears of fear. I wondered in my heart why I ever thought God wouldn't carry us through. I know a lot of you, like my mom, pray for God to heal Jacob completely. I know that it is possible, but I have felt for a long time that it isn't God's plan. I believe God is going to use Jacob and his NF2 for other things and it isn't for me to understand (although I’d be lying if I said I didn’t question it daily). At times it is very hard to swallow, to watch Jacob (and so many others we love) go through the trials of NF2, but right now, in the place we are in, I want to rejoice in the good. I prayed for God to help me decide which doctor to use. I know without a doubt for a long list of reasons He sent Jacob to Dr. A. I prayed for God to guide Dr. A to do his best with Jacob and bring him back to me in as good of shape as I handed him over. He returned Jacob to us with his strength and motors in tact in his left hand, strong legs and free of four tumors. I prayed for Jacob's recovery to be as painless as possible, and to be speedy (no one likes a miserable teenager for prolonged periods of time!). I believe these prayers were heard and answered better than I could have imagined. I prayed for love and support of our family, friends and community and we were given that in abundance! I prayed for so many things and each prayer has been answered. I know our NF2 war will continue, but I want to marvel in this battle won and give thanks to God. I will add that Dr. Asthagiri is an angel in disguise, as are our teams and staff at NIH... Oh, and Jacob too. Jacob, you are my hero. I am so proud to be your mama!!
As you can read a lot has happened since I last wrote a week ago. Jacob and I returned home Monday evening to a house full of loving family. Seeing TD, Brie and Gavin at the airport was like breathing fresh Tallahassee air for the first time in months. My heart felt full again and I was a happy girl! Time felt like it stood still when I was able to wrap my arms around Brie. I had worried almost as much about her as I had about Jacob. Her heart was broken that she had to be so far away from Jacob during such a difficult and scary time. They have been inseparable all of their lives. It felt good to have our family whole again. Jacob was so happy to see TD, Brie, Gavin, Papa Ken, Nana, Gina, Dana, and Renee, but he was ready to get to the house and eat Guthrie's chicken. We had a nice evening just all being together at home. There really is no place like home! The rest of the week has consisted of trying to unpack, unwind and get things back in order. Gavin has had a very congested nose all week, so I am running on very little sleep, but he is starting to feel better and his nose seems to be clearing up a little more each day. We are trying to get some lost weight back on Jacob and getting Brie and Gavin ready for school. Jacob enjoyed visits from Papa Ken and Nana, Aunt Becky, Uncle Todd and Chason this week. Several of the Boy Scout families visited and brought dinners to share with our family, taking a lot of stress off of TD, who is the chef in our house. Thank you all so much!! Maks and his family visited Jacob and Maks stayed with Jacob Thursday night so Brie and I could go to her Leon High School freshman orientation Friday morning. Yikes! My baby girl is starting high-school tomorrow!! Brie is nervous, but I know she is going to do fabulous. She has a great schedule including honors academics, dance, art and computer class. I really liked all of her teachers and her path to her classes isn't as crazy as Jacob's was last year. For those of you not familiar with Leon, it is an OLD, US National Register of Historic Places school established in 1831. It is three stories high and has an adjacent two story building full of classrooms, and multiple portables. Lots of stair-climbing and walking! I was sad Brie didn't get Mrs. Harris for English, but Mrs. Chancy seems like she will be lots of fun! Leon was good for, and good to, Jacob last year. I believe it will also be a great place for Brie to grow and learn. BTW, Mrs. Harris, Jacob did do his summer reading, but hasn't finished the writing part of it as of yet, but he will!! I am a bit annoyed that no one in guidance or the attendance office can seem to find the Hospital Home bound teacher form I need for Jacob, but I have faith that it will be taken care of this week... we'll see. Speaking of school, our littlest biggest guy will be starting PreK 3 on Tuesday. Gavin and I had a nice time at the Killearn Kids Preschool Meet and Greet on Thursday morning. Gavin's new classroom is colorful and full of so many new and exciting things for him to do. We liked his new teachers and had fun exploring his new room. We even met a few of his new classmates. I am little disappointed that none of his friends from last year will be in his class, but we are viewing it as a positive chance to make more awesome friends. At church this morning, Gavin participated in a very special service called the Blessing of the Backpacks. All of our children bring their backpacks and stand in front of the congregation in the sanctuary and the pastors, along with all of the families pray, over the children for the upcoming school year. Gavin was so adorable, one of the smallest on stage, and he listened and prayed, eyes closed and all! It was precious. I left feeling very good about the year to come. After the service, we went to show TD Gavin's new classroom and after looking over the other classroom rosters posted, we saw that several of Gavin's close friends from last year are in the five day program and Gavin will get to see them at recess. This made me really happy too.
I had a little me time this week. Much needed and appreciated. Nana came and stayed with the kids and I went and saw one of my close friends, Christi, at Kelly's Cottage at Lake Ella. I left two hours later feeling refreshed with a much needed cut, color and girl time to brighten my day. Thank you, Christi! I love my new hair! And thank you, mama, for staying with the kids! I’ve gotten two good runs in this week and logged 13 more miles. I have some new gear to write about, but I will save that for my running blog. Still loving running!
As I said in an email to Jacob's Boy Scout troop leader, there are not enough words to express my appreciation for the love and support we have received over the last few weeks! From close friends and loved ones here in Tallahassee, to Jacob’s Boy Scout Troop friends and family to my online NF2, hot mamas, and other digital friends and families, I am so blessed to have all of you, spanning the entire country, and even a few in other countries! I really don't know how we got so fortunate. Thank you all so much!!
First and foremost, Jacob is doing so well! It is a miracle. Simply amazing. Jacob is off "heavy" pain medication and although he is still uncomfortable at times, he is mostly pain free. He is showering, dressing, feeding himself and walking short distances comfortably. Jacob had his 19 staples painlessly removed on Thursday at Southeastern Plastic Surgery. Southeastern Plastic Surgery has a gorgeous office, extremely pleasant staff and Jacob had one of the prettiest nurses named Leslie, and it is always nice to see anyone in the Rosenberg family! Leslie had Jacob chatting away as she removed his staples. Jacob said he didn't feel a thing. Thank you, Dr. Laurence Rosenberg! His incision looks super cool and is healing perfectly. Jacob, other than being bored, is in great spirits and ready to tackle occupational therapy for his hands next week. He is still aggravated about the numbness in his hands and upper arms, but considering what could have been, we are extremely grateful for his surgery results.
God is good and he heard our prayers. Your prayers. Jacob is a walking testament of God answering prayers. I cried tears of joy for my son this morning in church instead tears of fear. I wondered in my heart why I ever thought God wouldn't carry us through. I know a lot of you, like my mom, pray for God to heal Jacob completely. I know that it is possible, but I have felt for a long time that it isn't God's plan. I believe God is going to use Jacob and his NF2 for other things and it isn't for me to understand (although I’d be lying if I said I didn’t question it daily). At times it is very hard to swallow, to watch Jacob (and so many others we love) go through the trials of NF2, but right now, in the place we are in, I want to rejoice in the good. I prayed for God to help me decide which doctor to use. I know without a doubt for a long list of reasons He sent Jacob to Dr. A. I prayed for God to guide Dr. A to do his best with Jacob and bring him back to me in as good of shape as I handed him over. He returned Jacob to us with his strength and motors in tact in his left hand, strong legs and free of four tumors. I prayed for Jacob's recovery to be as painless as possible, and to be speedy (no one likes a miserable teenager for prolonged periods of time!). I believe these prayers were heard and answered better than I could have imagined. I prayed for love and support of our family, friends and community and we were given that in abundance! I prayed for so many things and each prayer has been answered. I know our NF2 war will continue, but I want to marvel in this battle won and give thanks to God. I will add that Dr. Asthagiri is an angel in disguise, as are our teams and staff at NIH... Oh, and Jacob too. Jacob, you are my hero. I am so proud to be your mama!!
As you can read a lot has happened since I last wrote a week ago. Jacob and I returned home Monday evening to a house full of loving family. Seeing TD, Brie and Gavin at the airport was like breathing fresh Tallahassee air for the first time in months. My heart felt full again and I was a happy girl! Time felt like it stood still when I was able to wrap my arms around Brie. I had worried almost as much about her as I had about Jacob. Her heart was broken that she had to be so far away from Jacob during such a difficult and scary time. They have been inseparable all of their lives. It felt good to have our family whole again. Jacob was so happy to see TD, Brie, Gavin, Papa Ken, Nana, Gina, Dana, and Renee, but he was ready to get to the house and eat Guthrie's chicken. We had a nice evening just all being together at home. There really is no place like home! The rest of the week has consisted of trying to unpack, unwind and get things back in order. Gavin has had a very congested nose all week, so I am running on very little sleep, but he is starting to feel better and his nose seems to be clearing up a little more each day. We are trying to get some lost weight back on Jacob and getting Brie and Gavin ready for school. Jacob enjoyed visits from Papa Ken and Nana, Aunt Becky, Uncle Todd and Chason this week. Several of the Boy Scout families visited and brought dinners to share with our family, taking a lot of stress off of TD, who is the chef in our house. Thank you all so much!! Maks and his family visited Jacob and Maks stayed with Jacob Thursday night so Brie and I could go to her Leon High School freshman orientation Friday morning. Yikes! My baby girl is starting high-school tomorrow!! Brie is nervous, but I know she is going to do fabulous. She has a great schedule including honors academics, dance, art and computer class. I really liked all of her teachers and her path to her classes isn't as crazy as Jacob's was last year. For those of you not familiar with Leon, it is an OLD, US National Register of Historic Places school established in 1831. It is three stories high and has an adjacent two story building full of classrooms, and multiple portables. Lots of stair-climbing and walking! I was sad Brie didn't get Mrs. Harris for English, but Mrs. Chancy seems like she will be lots of fun! Leon was good for, and good to, Jacob last year. I believe it will also be a great place for Brie to grow and learn. BTW, Mrs. Harris, Jacob did do his summer reading, but hasn't finished the writing part of it as of yet, but he will!! I am a bit annoyed that no one in guidance or the attendance office can seem to find the Hospital Home bound teacher form I need for Jacob, but I have faith that it will be taken care of this week... we'll see. Speaking of school, our littlest biggest guy will be starting PreK 3 on Tuesday. Gavin and I had a nice time at the Killearn Kids Preschool Meet and Greet on Thursday morning. Gavin's new classroom is colorful and full of so many new and exciting things for him to do. We liked his new teachers and had fun exploring his new room. We even met a few of his new classmates. I am little disappointed that none of his friends from last year will be in his class, but we are viewing it as a positive chance to make more awesome friends. At church this morning, Gavin participated in a very special service called the Blessing of the Backpacks. All of our children bring their backpacks and stand in front of the congregation in the sanctuary and the pastors, along with all of the families pray, over the children for the upcoming school year. Gavin was so adorable, one of the smallest on stage, and he listened and prayed, eyes closed and all! It was precious. I left feeling very good about the year to come. After the service, we went to show TD Gavin's new classroom and after looking over the other classroom rosters posted, we saw that several of Gavin's close friends from last year are in the five day program and Gavin will get to see them at recess. This made me really happy too.
I had a little me time this week. Much needed and appreciated. Nana came and stayed with the kids and I went and saw one of my close friends, Christi, at Kelly's Cottage at Lake Ella. I left two hours later feeling refreshed with a much needed cut, color and girl time to brighten my day. Thank you, Christi! I love my new hair! And thank you, mama, for staying with the kids! I’ve gotten two good runs in this week and logged 13 more miles. I have some new gear to write about, but I will save that for my running blog. Still loving running!
As I said in an email to Jacob's Boy Scout troop leader, there are not enough words to express my appreciation for the love and support we have received over the last few weeks! From close friends and loved ones here in Tallahassee, to Jacob’s Boy Scout Troop friends and family to my online NF2, hot mamas, and other digital friends and families, I am so blessed to have all of you, spanning the entire country, and even a few in other countries! I really don't know how we got so fortunate. Thank you all so much!!
Saturday, August 11, 2012
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| Enjoying his warm and cozy recovery gift from Susan and fam :) |
Jacob is extremely proud of his 19 staples, as he should be. I am very proud of Jacob and another battle won against NF2! Feeling very thankful for God's hands, all of your prayers and Dr. A right now
This is an original photo from ICU. His left arm & hand had three different lines in it for veins and artery. His chest was covered in monitors, his port in his upper right chest was accessed, he had a very uncomfortable catheter. Each monitor and access has been removed one by one as they were no longer needed. He is now line free!!
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| First time outside in six days |
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| Taking a short break on our first long walk |
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| Bring it! |
Friday, August 10, 2012
It’s all hearsay, I tell you!
Today has been a trying day to say the least. I’ve been tasked with writing the BigJWilly update thanks to the lack of over-the-counter, stop-headaches-after-crying medicine available within NIH. Since all of this is based on a few out-of-order text messages courtesy of the trifecta of crap comprised of Sprint, Android and Tallahassee, please understand that while most of this will be true, there will most certainly be some biased comments that are completely wrong, both medically and morally. Thank you in advance for reading.
I went to sleep last night with the image of my wife in a camo Drake hoodie cussing out MRI staff flashing brilliantly over my eyes. I was a proud husband. It was 10:30 or so, and Jacob was still in MRI. I think that story’s been told, but for a quick recap, they (ICU, MRI, all of the above) messed up, causing mother bear to set things straight. Ultimately, everything that needed to be done was done, most likely with each of the techs looking over their shoulders for the elusive but ferocious Tallahassee running mombear.
I woke up this morning to nothing. No call. No text. Nothing. I hoped they were sleeping, so instead of bothering them directly, I posted some stuff on Jacob’s Facebook page so that each time someone commented, it would gently vibrate on their heads and let them know that I was thinking about them, along with the rest of the gazillion people that are supporting Jacob and our family through all of this, which I find both amazing and humbling, all wrapped in awesomeness!
My first conversation with Tammy occurred around 9:30 this morning, and it was not a happy conversation. We had a brief discussion last night about the fraternity of doctors-with-too-little-to-do, otherwise known as Infectious Disease. I dismissed what Tammy was saying because she was tired and venting, and because I thought it was resolved. Apparently it wasn’t. As Dr. Asthagiri gave Tammy great news about Jacob’s MRI, that everything about the surgical site looked great, she was also being told that Jacob may have a nasty bacterial infection that could or could not have originated in his port, and that, if the blood work taken from his arm comes back with hints of said infectious disease, it may require additional surgery on Monday, up to and including the removal of Jacob’s port. Commence pumping Jacob with more antibiotics. Awesome. Additional worry and stress, check. And the waiting game began again.
According to Tammy, one of the people in the hospital (I will not try and guess who) told her that the results of the blood work would be available 24 hours and 25 minutes from the time the test started, which would have been early afternoon today. I wish the weathermen in Tallahassee could be so bold as to make predictions like this! 50% chance my… Anyways, I knew that despite all of this, there were goals at hand, like OT and PT and standing up to pee, and that they had a fairly busy afternoon of training if they were still going to come home to us on Monday (because Tammy just knew that the Infectious Disease staff was wrong and that whatever they found was probably because they did something stupid). I started to worry around lunchtime after calling a few times and failing to get a response. Thankfully, she just didn’t want to talk to me at that point (kidding, I hope)!
Tammy sent me this picture around 2 this afternoon of Jacob, dressed in basketball shorts and a Guy Harvey with sleeves (for those of you who know about the sleeveless Guy Harvey’s, you understand my cheerfulness towards the sleeves!), walking down the hallways with PT Joe. Yeah, I know you can’t see him, because he’s walked too far down the hall!
According to the previously referenced texts, Infectious Disease determined that the bacteria was a “contaminant,” meaning that it did not originate in Jacob, and that Jacob could stop being pumped with infectious disease-killing antibiotics. “She” (a co-ed fraternity, it seems) said that it is believed to have come from the top of the test tube containing the blood sample. A big sigh of relief, accompanied with a big spoonful of “Tammy was right about Infectious Disease.” At this point, I’d imagine that there was some crying. Tears of joy, of course.
PT had Jacob walk 250 ft this afternoon. They gave Jacob a high-backed wheelchair for Tammy to push him around this weekend, you know, to “get out!” More importantly, Jacob will be taking a shower and removing his bandage tonight when the shower chair comes! And no more swabs! The TV is fixed in the recovery room as of today, so everything seems to be falling into place.
Throughout all of this, it has been most difficult for me to be here in Tallahassee knowing that both Jacob and Tammy could really use someone else in their corner up there. Especially to take care of Tammy in those fleeting moments where she might actually let someone spell her for a minute or two. I cannot give enough thanks and gratitude to Casey, Lacey, Gracie and Ben for being there for Tammy and Jacob. I was able to sleep a little better knowing that Tammy and Jacob weren’t alone on this journey. Thank you.
So, I sit here, praying for a good night’s sleep for Tammy, a speedy recovery for Jacob, peace of mind for Gabrielle, a beautiful Saturday outside for Gavin and Pop, a nice drive for Gramma Gina, a way to show our appreciation to all of you who take the time to pray for Jacob, something to do, preferably outside the NIH walls, for the Infectious Disease staff, and a win in a meaningless preseason game for my Bucs. If only one can come true, I’ll apologize now. I cannot bear the thought of Miami winning.
Thomas
Today has been a trying day to say the least. I’ve been tasked with writing the BigJWilly update thanks to the lack of over-the-counter, stop-headaches-after-crying medicine available within NIH. Since all of this is based on a few out-of-order text messages courtesy of the trifecta of crap comprised of Sprint, Android and Tallahassee, please understand that while most of this will be true, there will most certainly be some biased comments that are completely wrong, both medically and morally. Thank you in advance for reading.
I went to sleep last night with the image of my wife in a camo Drake hoodie cussing out MRI staff flashing brilliantly over my eyes. I was a proud husband. It was 10:30 or so, and Jacob was still in MRI. I think that story’s been told, but for a quick recap, they (ICU, MRI, all of the above) messed up, causing mother bear to set things straight. Ultimately, everything that needed to be done was done, most likely with each of the techs looking over their shoulders for the elusive but ferocious Tallahassee running mombear.
I woke up this morning to nothing. No call. No text. Nothing. I hoped they were sleeping, so instead of bothering them directly, I posted some stuff on Jacob’s Facebook page so that each time someone commented, it would gently vibrate on their heads and let them know that I was thinking about them, along with the rest of the gazillion people that are supporting Jacob and our family through all of this, which I find both amazing and humbling, all wrapped in awesomeness!
My first conversation with Tammy occurred around 9:30 this morning, and it was not a happy conversation. We had a brief discussion last night about the fraternity of doctors-with-too-little-to-do, otherwise known as Infectious Disease. I dismissed what Tammy was saying because she was tired and venting, and because I thought it was resolved. Apparently it wasn’t. As Dr. Asthagiri gave Tammy great news about Jacob’s MRI, that everything about the surgical site looked great, she was also being told that Jacob may have a nasty bacterial infection that could or could not have originated in his port, and that, if the blood work taken from his arm comes back with hints of said infectious disease, it may require additional surgery on Monday, up to and including the removal of Jacob’s port. Commence pumping Jacob with more antibiotics. Awesome. Additional worry and stress, check. And the waiting game began again.
According to Tammy, one of the people in the hospital (I will not try and guess who) told her that the results of the blood work would be available 24 hours and 25 minutes from the time the test started, which would have been early afternoon today. I wish the weathermen in Tallahassee could be so bold as to make predictions like this! 50% chance my… Anyways, I knew that despite all of this, there were goals at hand, like OT and PT and standing up to pee, and that they had a fairly busy afternoon of training if they were still going to come home to us on Monday (because Tammy just knew that the Infectious Disease staff was wrong and that whatever they found was probably because they did something stupid). I started to worry around lunchtime after calling a few times and failing to get a response. Thankfully, she just didn’t want to talk to me at that point (kidding, I hope)!
Tammy sent me this picture around 2 this afternoon of Jacob, dressed in basketball shorts and a Guy Harvey with sleeves (for those of you who know about the sleeveless Guy Harvey’s, you understand my cheerfulness towards the sleeves!), walking down the hallways with PT Joe. Yeah, I know you can’t see him, because he’s walked too far down the hall!
According to the previously referenced texts, Infectious Disease determined that the bacteria was a “contaminant,” meaning that it did not originate in Jacob, and that Jacob could stop being pumped with infectious disease-killing antibiotics. “She” (a co-ed fraternity, it seems) said that it is believed to have come from the top of the test tube containing the blood sample. A big sigh of relief, accompanied with a big spoonful of “Tammy was right about Infectious Disease.” At this point, I’d imagine that there was some crying. Tears of joy, of course.
PT had Jacob walk 250 ft this afternoon. They gave Jacob a high-backed wheelchair for Tammy to push him around this weekend, you know, to “get out!” More importantly, Jacob will be taking a shower and removing his bandage tonight when the shower chair comes! And no more swabs! The TV is fixed in the recovery room as of today, so everything seems to be falling into place.
Throughout all of this, it has been most difficult for me to be here in Tallahassee knowing that both Jacob and Tammy could really use someone else in their corner up there. Especially to take care of Tammy in those fleeting moments where she might actually let someone spell her for a minute or two. I cannot give enough thanks and gratitude to Casey, Lacey, Gracie and Ben for being there for Tammy and Jacob. I was able to sleep a little better knowing that Tammy and Jacob weren’t alone on this journey. Thank you.
So, I sit here, praying for a good night’s sleep for Tammy, a speedy recovery for Jacob, peace of mind for Gabrielle, a beautiful Saturday outside for Gavin and Pop, a nice drive for Gramma Gina, a way to show our appreciation to all of you who take the time to pray for Jacob, something to do, preferably outside the NIH walls, for the Infectious Disease staff, and a win in a meaningless preseason game for my Bucs. If only one can come true, I’ll apologize now. I cannot bear the thought of Miami winning.
Thomas
Wednesday, August 8, 2012
Written Aug 7, 2012 3:04pm
I was waiting to update until surgery was over but it is taking longer than expected.
Jacob went to OR at 8 am in good spirits. His OR nurse even put country music on for him. I got an update at noon that the large tumor removal started and another update at 2:00 that Dr A was starting removal on two small tumors. Both updates the nurse said Jacob is doing great. They will contact me again when they are closing. Then the second big wait will start to see how Jacob's hands and legs are doing.
Thank you all for your prayers and loving support today. Keep them coming!!!
Jacob went to OR at 8 am in good spirits. His OR nurse even put country music on for him. I got an update at noon that the large tumor removal started and another update at 2:00 that Dr A was starting removal on two small tumors. Both updates the nurse said Jacob is doing great. They will contact me again when they are closing. Then the second big wait will start to see how Jacob's hands and legs are doing.
Thank you all for your prayers and loving support today. Keep them coming!!!
Written 18 hours ago
7:30 pm After 11.5 hours Jacob is recovering in ICU. He can squeeze my hand and wiggle his toes!! Praise God.
There ended up being 5 tumors total. The removed all of three of them, 95% of one & left a tiny one on the motor nerve to the left hand.
10:23 pm Jacob is awake and talking. He is in pain, but coping as best he can. His body has been through a lot. He has a morphine pump and is on zofran. He's been able to have ice chips. Jacob is complaining of numbness in both his hands. They feel "asleep." I'm not sure if this is normal or not, but I'm hoping its normal. Not one of the things Dr A mentioned but the ICU doctor is aware.
They are going to let Jacob eat soon.
I can't wait until he feels better so I can read to him all the emails and messages of love and prayers he received today.
Thank you all!
There ended up being 5 tumors total. The removed all of three of them, 95% of one & left a tiny one on the motor nerve to the left hand.
10:23 pm Jacob is awake and talking. He is in pain, but coping as best he can. His body has been through a lot. He has a morphine pump and is on zofran. He's been able to have ice chips. Jacob is complaining of numbness in both his hands. They feel "asleep." I'm not sure if this is normal or not, but I'm hoping its normal. Not one of the things Dr A mentioned but the ICU doctor is aware.
They are going to let Jacob eat soon.
I can't wait until he feels better so I can read to him all the emails and messages of love and prayers he received today.
Thank you all!
Written 10 minutes ago
Good morning. Yes, I know it's 3:30 pm but it feels like morning to us. We finally got a few hours of sleep this morning around 9 am to 12 pm. Last night was rough. Jacob has been uncomfortable and in pretty bad pain off and on. They are trying to find the right combo of drugs to get his pain under control. His blood pressure was really high last night and he was given drugs to bring it down. It is controlled now. His heart rate has been really high for over 24 hours now, but it's at 130 BPM now and that is an improvement. His EKG was abnormal so they are watching his heart closely. He had one of his ventricles stop for a moment last night and that was of great concern for a few hours. He had a fever of 102 last night but that is down now too. The ICI is thorough if nothing else and they don't think you need sleep, lol. Today has been better. Jacob ate a little breakfast and lunch. They wanted to get him up and have him move out of ICU, wanted him to do a MRI, but all of that is on hold right now. Dr. A has come in to see Jac twice now. The numbness in his hands is normal and may take several months to calm down. His right hand may always have some in it. The good news is that even though it is very painful for J to lift his arms or legs he CAN and he seems to have the same strength as before surgery. As time goes on we will have more info but for now I am so happy that his "Neuro" exams are going well. Reflecting on the surgery info from yesterday I am so thankful we came here with Dr. A and he choose to do what is best for Jacob's quality of life and not what was the easiest....and he completed their main goal. Jacob now has a happy spinal cord!!!
Today we are watching for blood clots to form in the large areas the tumors were removed. Tomorrow we will be watching for spinal fluid leakage and hoping J won't need a lower spinal drain. I have a lot more info to share but will do that at a later time.
I read Jacob some of his messages of hope this morning from all of you. It was hard to not cry tears of love so we only got through some of them, but we will have more to read later. He knows he has an army who is lifting him up with prayer and hope!!
Thank you all so much. My words are never enough.
Today we are watching for blood clots to form in the large areas the tumors were removed. Tomorrow we will be watching for spinal fluid leakage and hoping J won't need a lower spinal drain. I have a lot more info to share but will do that at a later time.
I read Jacob some of his messages of hope this morning from all of you. It was hard to not cry tears of love so we only got through some of them, but we will have more to read later. He knows he has an army who is lifting him up with prayer and hope!!
Thank you all so much. My words are never enough.
Monday, August 6, 2012
Notes for LTML and Caring bridge:
August 5, 2012
It's 6:25 pm, in flight, and the captain just turned off the “no electronics” sign. Jacob and I are finally on our way to DCA. Our day started entirely too early in St. Pete this morning. After our busy weekend, it was hard to get up to drive home, especially since we were headed home just so we could fly to DC for Jacob's surgery. TD has to go back to work and Brie has to take an Algebra EOC exam tomorrow. Just so we’re clear, I'm extremely nervous right now. We are in extremely thick clouds and pushing through turbulence. Our flight was delayed an hour due to bad weather and prior to departing, we were informed that we had to get extra fuel in case we had to fly around storms. Awesome. Jacob is a happy guy right now, though. His fellow Boy Scouts, Leaders and their families all came to the airport to wish Jacob well. They made this incredible poster for Jacob, too. Papa Ken, Nana, Pop Dana, TD, Brie, Gavin and me added to the group, so Jacob had an impressive mob of fans. My heart is truly warmed by the abundance of love we have received for Jacob. These are the moments that remind us of our foundations.
[A little while later…] Whoa. Rough landing. We survived and are waiting at TGIF’s for dinner (thank you, Papa Ken & Nana). Jacob is talking on the phone, and yes, he is still reliving his awesome fishing trip from Saturday. He and I had a great conversation about his little send off gathering at the airport. He is on cloud 9. Everyone coming to see him was really special. I printed the wrong shuttle schedule (the 06/15/2007 version) so the 9 pm bus to NIH that I thought we would be on doesn't exist. Oh well. We will be riding the Metro Subway. Again.
Hello, beautiful Children's Inn. Finally, after a four hour van ride from St. Pete to Tallahassee, the a vehicle change because our van broke down AGAIN on the way to the airport (if you can believe that), then a 2 hour flight that started an hour late, a 90 minute subway trip and lastly a fifteen minute walk from the subway to the Inn (because campus shuttle was shut down for the night and security isn't available), we made it. No biggie right? It's only 11 pm, lol. We did see a beautiful doe on our walk and we have a huge room with two big windows and a nice view of the hill. Too bad tonight will be our only night sleeping here.
August 6, 2012
Day before surgery.
Yesterday, when dressing for the airport, I put on my little pieces of love and hope. My Beads of Courage bracelet, blue CTF Cure NF2 arm band, my family birthstone ring, memory necklace and my necklace that's pendant reads, "The most beautiful stones have been washed by the waters and polished to brilliance by life's strongest storms." Jacob is a jewel for sure! At the airport yesterday, one of Jacob's Scout leaders gave me another precious piece to cherish, a "May Prayer Strengthen You" coin. I'm sure it has been held during prayer and I will keep it close to my heart to remind me of God's love and strength and our family and friends praying for us at home. The outpour of support Jacob and our family is receiving is amazing. God is working through so many people right now and I am in awe.
Even though I did phone admissions over a week ago, it was our first stop this morning. As always, everyone was very nice and it was painless, signing a few pieces of papers. We went to 1 Northwest and Jacob was admitted into his room, 1-1664 NW. We had to do a looong intake and a tech came in close after and took Jacob for his height and weight. Jacob had his port accessed and labs drawn, the usual. Dr. Asthagiri came in and talked to us, as did Dr. Yong. Jacob was able to ask all of his questions. I will write about our conversation later when I have my thoughts better in order.
After Jacob had lunch, we went to his pre-anesthesia appointment at 1:15 and then had his chest X-Ray. Now we are waiting for the doctors to say it is ok for Jacob to go over to the Inn to "hang out".
I am happy to report NIH has a new wifi system and that I can use my stuff! Yay! That makes Jacob and me both very happy. Jacob loves his new iPad.
To be continued :)
It's 6:25 pm, in flight, and the captain just turned off the “no electronics” sign. Jacob and I are finally on our way to DCA. Our day started entirely too early in St. Pete this morning. After our busy weekend, it was hard to get up to drive home, especially since we were headed home just so we could fly to DC for Jacob's surgery. TD has to go back to work and Brie has to take an Algebra EOC exam tomorrow. Just so we’re clear, I'm extremely nervous right now. We are in extremely thick clouds and pushing through turbulence. Our flight was delayed an hour due to bad weather and prior to departing, we were informed that we had to get extra fuel in case we had to fly around storms. Awesome. Jacob is a happy guy right now, though. His fellow Boy Scouts, Leaders and their families all came to the airport to wish Jacob well. They made this incredible poster for Jacob, too. Papa Ken, Nana, Pop Dana, TD, Brie, Gavin and me added to the group, so Jacob had an impressive mob of fans. My heart is truly warmed by the abundance of love we have received for Jacob. These are the moments that remind us of our foundations.
[A little while later…] Whoa. Rough landing. We survived and are waiting at TGIF’s for dinner (thank you, Papa Ken & Nana). Jacob is talking on the phone, and yes, he is still reliving his awesome fishing trip from Saturday. He and I had a great conversation about his little send off gathering at the airport. He is on cloud 9. Everyone coming to see him was really special. I printed the wrong shuttle schedule (the 06/15/2007 version) so the 9 pm bus to NIH that I thought we would be on doesn't exist. Oh well. We will be riding the Metro Subway. Again.
Hello, beautiful Children's Inn. Finally, after a four hour van ride from St. Pete to Tallahassee, the a vehicle change because our van broke down AGAIN on the way to the airport (if you can believe that), then a 2 hour flight that started an hour late, a 90 minute subway trip and lastly a fifteen minute walk from the subway to the Inn (because campus shuttle was shut down for the night and security isn't available), we made it. No biggie right? It's only 11 pm, lol. We did see a beautiful doe on our walk and we have a huge room with two big windows and a nice view of the hill. Too bad tonight will be our only night sleeping here.
August 6, 2012
Day before surgery.
Yesterday, when dressing for the airport, I put on my little pieces of love and hope. My Beads of Courage bracelet, blue CTF Cure NF2 arm band, my family birthstone ring, memory necklace and my necklace that's pendant reads, "The most beautiful stones have been washed by the waters and polished to brilliance by life's strongest storms." Jacob is a jewel for sure! At the airport yesterday, one of Jacob's Scout leaders gave me another precious piece to cherish, a "May Prayer Strengthen You" coin. I'm sure it has been held during prayer and I will keep it close to my heart to remind me of God's love and strength and our family and friends praying for us at home. The outpour of support Jacob and our family is receiving is amazing. God is working through so many people right now and I am in awe.
Even though I did phone admissions over a week ago, it was our first stop this morning. As always, everyone was very nice and it was painless, signing a few pieces of papers. We went to 1 Northwest and Jacob was admitted into his room, 1-1664 NW. We had to do a looong intake and a tech came in close after and took Jacob for his height and weight. Jacob had his port accessed and labs drawn, the usual. Dr. Asthagiri came in and talked to us, as did Dr. Yong. Jacob was able to ask all of his questions. I will write about our conversation later when I have my thoughts better in order.
After Jacob had lunch, we went to his pre-anesthesia appointment at 1:15 and then had his chest X-Ray. Now we are waiting for the doctors to say it is ok for Jacob to go over to the Inn to "hang out".
I am happy to report NIH has a new wifi system and that I can use my stuff! Yay! That makes Jacob and me both very happy. Jacob loves his new iPad.
To be continued :)
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 :)
http://www.boggycreek.org/
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 http://www.facebook.com/groups/459528050737782/
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! :)
http://runningforlemonade.wordpress.com/2012/07/20/my-little-engine-that-could-moment-13-1-miles/
Thank you all, again. I will be updating soon.
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 :)
http://www.boggycreek.org/
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 http://www.facebook.com/groups/459528050737782/
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! :)
http://runningforlemonade.wordpress.com/2012/07/20/my-little-engine-that-could-moment-13-1-miles/
Thank you all, again. I will be updating soon.
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| One of the slides at the Coco Key Resort |
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| Jaws is no longer a ride at Universal |
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| 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 :) |
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| 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) |
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| Jack McLean Pool Park |
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| Sprinkler Splash Pad at Southwood |
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| Jacob and Gavin at Camp ROCK send off party. |
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| Gavin and I went to the Antique Car Museum yesterday. |
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