This post is way past due I know! I've been updating Jacob's Facebook Team page via my phone, but haven't been able to get on the computer until tonight.

Here are my posts from the past few days, unedited. It's the easiest way for me to update :)

Wednesday

Jacob had a CT scan and we met with the neuro surgeon and his ARNP for pre op. Today has been awful. The "I told you so" was ugly and I felt like the way the doctor spoke to Jacob today was unkind. When they told us Jacob needed to be admitted and placed into traction I became upset and started asking questions. The doctors' response was very blunt. He told Jacob that if traction didn't work he would have to "break his neck" during surgery. So Jacob spent several hours worried about how horrible a traction was going to be and we were finally taken to a room in Peds around 3:00 pm. Jacob was accessed and given pain medications. The neuro resident used a local numbing agent via needle on either side of Jacob's head where the traction would be screwed in. Jacob laid perfectly still during the procedure. I was so proud of him and moved by his bravery! Watching them place the traction was by far one of the worst things I have ever witnessed be done to my child. Child Life came in and took Gavin to play during the process. TD and Brie are coming down later. We had no idea Jacob would be admitted much less have this horrible traction. The purpose is to stretch his muscles and align his spine. Jacob can't move or get out of bed. His head and neck are suspended and will be until tomorrow.

  

Thursday morning

Last night was hard. They nurses came in to check on Jacob every 30 minutes, to check his vitals and make sure his pain was under control. The resident came in every few hours to put more weight on the traction thingy. Jacob's machine beeped all night and we got very little sleep. I was really glad Brie stayed with us to keep us company. Jacob didn't get a room mate until around 5:30 am. The neuro team came to take Jacob to pre-op at 6:00 am. I was so upset that they transported Jacob to the pre-op area still attached to the traction and 30 lbs hanging from his head. We sat in pre-op until 8:05 am and I said goodbye with a heavy heart. As I am crying Jacob said, "Mama, why are you crying?" I usually can hold it in until he is taken away, but I could not today. He was so brave and said, "I'll see you soon."

Thursday afternoon

Jacob's surgery is over. Sigh. The doctor said he did very well and everything went as planned! His fusion is from C-5 to T-3 We haven't seen Jacob yet, but they will let us know when he is in PICU. Thank you all for your many prayers and support! I will keep everyone updated.

Friday

I'm so happy to log on this afternoon and report that Jacob had a really good recovery day today! After one of the Neuro residents came in this morning at 6:00 am and saw how much pain Jacob was in all night (night two with NO sleep) they ordered an anti inflammatory drug, toradol. Jacob always responds really well with toradol. Jacob's Neuro surgeon came in around 9 am and got him out of bed and showed him his before and after images. Jacob has been up walking with his walker several times and is taking a well deserved nap. He is still on other pain medications but a lower dose. He's eating, drinking and integrating. Tomorrow the dressings come off and he can shower. I think The spot where they removed a rib to use in the fusion may hurt more than the spinal incision.
Jacob continues to amaze me. I am forever grateful for all of your support!!! 

 I will post pics :)

 

 













Saturday morning the bandages came off

Jacob's newest battle scars! The stitches look very different than staples. Jacob's got some new hardware and had a rib removed, grinded and placed to help support his spine. J's Neuro surgeon said they may remove the titanium after about 18 months of healing.

Saturday morning

I am rested and ready to get post op day 2 over and closer to heading home. TD stayed with Jac last night so I could sleep. He said Jacob slept well. The neuro doctor came in and removed Jacob's bandages. Jacob has made the transition from IV pain meds to oral and is not handling it well. It didn't feel well during PT and is struggling with getting comfortable.

Sunday morning

It's 6 am and I am watching the door like a hawk for Jacob's doctor to come in. It was a sleepless, upsetting night in Jacob's room, but not because of Jacob. He's doing pretty good.
Early yesterday afternoon a little boy came up from the ER and was placed in the room with us. He was racing motocross at Gatorback and flipped off his bike. He's had x rays, been taken for a CT, is in a neck collar, can't sit up, eat or drink. He has cried, whimpered and whinnied all night. His machines are constantly beeping. Jacob and I feel so bad for him. It doesn't help that his grandparents keep leaving him and he gets scared.
He has a broken collar bone and tummy cramps. I hope he gets relief soon.
I also hope so much that Jacob gets discharged this morning. Right now wouldn't be too soon. We didn't expect to go home so soon but he's on oral pain meds, eating, drinking and walking. It's time.

The rest of our family and Jacob's family all made it home safely to Tallahassee, St. Pete, and Thomasville last night. Really looking forward to saying the same for us tonight!

Sunday afternoon

Jacob and I are home and he's survived another tough day of transition and recovery. May the at home healing begin!!!



First neighborhood stroll :)

The weekend is here and I’m trying to get my thoughts together, to mentally prepare myself for next week.  Our week went by fast, although our trip to Orlando seemed long at the time.  I went to my first MOPS meeting since the holidays on Wednesday morning and enjoyed a presentation by Verity Health Center's Chiropractor.  All the mommies participated in a twelve minute workout, which I am still sore from, in more spots than one.  I had a very unproductive run today as well.  Not sure if I can blame cross-training (I did some P90X core Tuesday as well), lack of sleep or just feeling like life is beating me down.  Regardless, I am, we are, pushing back and pulling through.

Jacob met his new occupational therapist, Helene, Wednesday afternoon.  I like her very much and she seems very knowledgeable regarding neurological issues and therapies.  Helene tested and measured Jacob's hands and he will resume weekly appointments after he recovers from the surgery next week. I’m guessing (hoping) around week four post-op.  He was able to start back with Judy for his hands around this time after his spinal surgery in August. 

After therapy and picking up Brie from school, we made our way to Orlando.  The four hour ride to Orlando always feels so long after having a full day and I really dislike the Turnpike in the dark.  There are many places that are very dark.  I’ve been fighting the feeling of not liking to drive at night because I don't want to sound like my parents, but I really do not like it.  The on- coming lights are bright and it’s just tiring.  It doesn't help that my glasses were in my stolen purse in October and I have not yet replaced them. 

Our room at the Ronald McDonald House was interesting.  It was called the "Emmett Smith Toast."   Although I am NOT a Gator or Cowboy fan, I do like Emmett Smith.  I have very fond memories watching him play in the Swamp when I was a little girl.  And although I am a die- hard FSU fan, my first college games were with my best friends at University of Florida.  Regardless of these special memories, I found it a bit creepy to have a room full of Smith's portraits.  On every wall.  Staring at us.  All night.  I think Jacob counted 8 different photos of the Hall of Famer.  Anyway, we are always thankful to have a room we can afford at the RMH and would gladly spend many nights with Emmett!  :) 

Thursday was long.  Very long. Jacob's first appointment was at the Heart Institute.  He had an echo-cardiogram and EKG.  We found out later that both tests showed that his heart is healthy.  I need to get a copy of these reports in anticipation that the pain medications Jacob will be given after surgery next week will surely send his heart-rate soaring.  Obviously I’m worried about this happening again.  I had a nightmare this morning about the doctor coming in to tell me that something was wrong with Jacob's heart.  It will be good to have proof that there is not! 

After breakfast, RMH clean up and the playroom, we enjoyed lunch at Chic-fil-a and a visit from the lovely Olivia, Orlando's Moms RUN This Town fearless chapter leader!  I was so excited to see her and it was really cool that we were both wearing our Sandy Hook MRTT fundraiser shirts without planning it.  Gavin had a great time playing with several other kids in the playroom, burning off a small supernova of energy. 

Jacob's clinic appointment wasn't until 2:30 and lasted until 4:30, which isn't long considering some of the appointment lengths (or waits) over the years, but with a four-hour drive home, these afternoon appointments get late.  We learned that Jacob can continue on the lapatinib until the day before surgery and can resume it ten days later.  We will wait to see how Jacob is doing to decide if ten days post op is a good time to resume the chemo.  We also talked about his weight loss and will try a new seizure drug after her recovers from surgery.  Jacob's labs looked perfect and his liver function is healthy. 

Our drive home was an adventure, but with hopes of not boring you with more unwanted details, I will just say we got home at 9:30 pm and we are happy to have survived another day in this crazy life.  Jacob and Brie are at their dad's this weekend and will be home Sunday evening.  Monday will be a nice holiday for us all to relax and hang out together before next week’s chaos.  Brie got her braces off last week.  She looks beautiful!  Tomorrow, she will get her final retainer to keep for her lifetime.  Dr. Cummings did a fantastic job and her braces were worth every bit of the $4,500!!  Jacob is going on year three with his on, but I'm pretty sure he won't go to college in them!  Jacob, Gavin and I will be leaving early Wednesday morning for Gainesville.  Jacob's pre op is at 11:00 and we will get details then.  I’ve been asked about the length of surgery, how the fusion will be preformed, how many days Jacob will be in the hospital and other similar questions.  I don't have any definite answers and will write a post Wednesday night to update everyone!  Until then I hope you all enjoy your three day weekend and start your week off well.      

Jan 15, 2013 8:11 AM
Jacob's surgery is scheduled for Thursday, January 24, 2013. He will
have pre-op and possibly a CT scan on the Wednesday before. David
Pincus, MD, will perform the surgery at Shands UF in Gainesville. We've
been told he performs many fusions and is the go-to pediatric
neurosurgeon for many scoliosis patients who need fusions. Jacob has a
positive history with Dr. Pincus and we trust him completely. He did
Jacob's craniotomy for optic nerve decompression with Dr. Lewis in 2009.
He's followed Jacob since he was eight years old. I don't know what time
the surgery will start and I don't know the details of the surgery. We
will learn all of that next Wednesday and I will share more then.

Today, Jacob was discharged from his beloved OT, Judy, to start
occupational therapy at a neurological clinic. We will miss Judy very
much. Jacob has seen her every week for the last five years. She's been
a blessing in our lives.

Tomorrow, Jacob will have PT with Amy and Wednesday Jacob will meet his
new occupational therapist. Wednesday afternoon the boys and I will
drive four hours to Orlando to see Jacob's pediatric neuro-oncologist to
do labs, a heart echo and make sure his is still tolerating the chemo well. I'm assuming we will wait to change his seizure drug unless it can safely be done in a week.

I'm in great need of positive energy and prayers.

Jacob is in good spirits knowing there's a very high chance he will be
pain free (and hopefully a little less wobbly!) after surgery.

Warning: This is a long and sad one.

I’ve been putting off writing this update all evening. I just wasted thirty minutes looking at forearm tattoos, but I know how important it is to keep all of our family and friends updated, so here it is.

Today felt all too familiar. The emotions of defeat hurt deeply. This NF2 roller coaster is not what I wanted for my child or for my family. Today I cannot stand it. Today I hate NF2. Hate it. I am very aware that this life isn't meant to be smooth sailing. It isn't intended to be easy or fair. I am familiar with scripture that suffering is necessary to enter the gates of heaven, but I'd like to come up for air and get out of the deep waters for a little bit. Tomorrow, I know I will find the positive or see how much worse things could be for Jacob and our family. Tonight, however, I am crushed.

The hardest news today was that Jacob needs a spinal fusion, immediately. Dr. A is working on finding the doctor he thinks will be the best in Florida to perform said procedure. Dr. A started by contacting a few surgeons he knows at Shands UF in Gainesville, FL before we even left clinic. For those wondering, yes we had to make the decision during the cervical spine surgery whether to have a fusion. We contemplated it for over a year. I’ve cried all my tears out today and beaten myself up for choosing to not have the fusion during his surgery in August. I assume this would be the initial reaction of any mother, but when I get passed the painful thoughts of my precious child having to have another invasive surgery, and when I swallow the displacement surgeries cause our family and put aside the worry of Jacob missing more school, I know I made the right choice back then, that Jacob and I together made the right choice. Dr. A, without a doubt, was the right surgeon for the cervical tumors removal. It was also the right choice to help the NF2 study and for the NIH to be able to use Jacob's schawannomas for research. We knew Dr. A would do his best to preserve Jacob's left hand. I know he cares and has Jacob's quality of life at the top of his priorities. I couldn't have the fusion for Jacob and the surgeon I wanted, so we took the chance, hoping Jacob wouldn't be in the 15% of people who need the fusion after a lapendectomy and went with the right surgeon for tumor removal. Even though I know all of this, even though I truly believe we made the best decision at the time, I am still extremely saddened that Jacob has to have another extremely invasive and painful surgery and recovery. Regardless of my emotions, I do not regret having Dr. A do his cervical surgery.

In random order, or a “stream of consciousness” as I hear so frequently:

Many worries come with a fusion. After the fusion, Jacob's spine, from roughly C-4 to T-4, will be very hard to see on any imaging. With CT scans, the metal makes everything look white and the MRI is unclear as well. Dr. A said clinic exams will be crucial and if there are worries, they can use a myelogram, which is not pleasant at all. Being able to clearly see the entirety of Jacob's spine with MRI in order to monitor his other spinal tumors was the primary reason we wanted to wait and not do the fusion. Because he doesn’t have a fusion, we were able to see that the area from August where the tumors were resected looks pretty good. The spinal cord is not compressed and the tumors have not grown back. That’s about the extent of the good news.

Jacob is having left hand function issues with increasing frequency as of late. He struggles doing simple tasks like opening drink containers, opening the front door or tying his shoes. We have high hopes that straightening up the deformity in his spine will take pressure off the nerve that has the tiny bit of tumor which was left at that C-7 nerve, but Dr. A said it very well may be from scar tissue forming or that specific tumor changing since surgery. He said it is very far out from the spinal cord and they don't see it on MRI. We all agree that having some loss of function is better than them removing the entire nerve, and tons better than Jacob not having any function left in that hand at all.

He’s also having leg weakness and knee and hip pain, all of which have progressively worsened in the past few weeks. We didn't do any sightseeing in DC this trip because Jacob can hardly walk straight or without pain. Dr. A believes this is also from the curvature in his spine. When the spinal cord is misplaced in the “S” shape, being stretched can cause problems with sensations coming up from the legs and the ability to feel properly. With these issues, a person doesn’t know where their legs are and causes difficulty walking, the reason Jacob is stumbling so bad. The fact that he feels better when he is laying flat (and his legs are “warm”) suggests the pain and discomfort is from the deformity. It also explains why it’s getting worse. Dr. A said it is obvious on Jacob's x rays from this week that there are severe changes.

As for the numbness in his belly, Jacob most likely has a belly tumor, but since the option would be to remove the tumor, which would cause numbness after removal, they feel it is unnecessary to locate it. The area in the spine that effects the belly area (at T10) was clear of tumors, so they do not think Jacob is in any danger because of the numbness.

There is an NF2 study at Johns Hopkins showing that lapatinib can be taken up to the day before surgery, so we’re in the clear for that as well.

I could write more about the fusion conversation, but you get the idea.

The other big, but not AS pressing, concern is the right VS. It's grown about 3-4 mm since July, which is considered fast. I’m sending Dr. A Jacob's MRI from Orlando to see if he can tell when it grew. We don't think he’s been on the Tykerb long enough to say whether or not it is working. Jacob's hearing is still pretty good (thank goodness). His ABR testing shows changes for the worse, but that’s expected with the growing VS. We’ll think about it more after the fusion business.

Lastly, I want to say thank you to Casey for driving us to and from the airport. Not having to catch the bus or ride the metro was so awesome, especially with how Jacob has been feeling. Jacob and I both really enjoyed spending time at Casey's house Wednesday afternoon and really, really enjoyed dinner! Becky and Savannah joined us and we had a great time. Jacob said it was fun to hang out with Casey's girls like he did growing up. Oh, and I held a rat for the first time too. Lacy has two!

I will keep everyone updated. I know I am always begging for prayers, but Jacob needs them. Oh, yeah, and we made it home safely, with a much-too-eventful ride home, complete with every redneck adage in the book! I couldn't believe it was 80 degrees in Tally when we landed, but I didn't care I was so happy to be home and reunited with the rest of me.

Jan 9, 2013 2:40 PM
Wednesday, January 9, 2013

Our day has just started. Jacob is back on OP5 for more balance testing and his hearing screening. Hoping for good news…

I have nothing to report from yesterday, it was a bust. We started off in Pediatric Oncology at 7:30 am for Jacob to get an IV for his CT scan. Jacob likes to go there for his IVs because Radiology techs are rough. After his mostly painless IV placement, we went down to Radiology, ready to have a CT scan only to learn he was getting a series of x-rays. I read the schedule wrong. Evidently, "C-T swimmers view radiology" is a type of x-ray. So much for my medical degree! I felt so bad that I had Jacob get an IV. He didn't complain though and didn't make me feel bad either. It would’ve been nice when I checked with Jacob's nurse on Monday to make sure his CT bloodwork was done at the same time as his other labs if she had told me he wasn't having a CT. Or when I emailed them months ago and asked them what the CT was for if they would have responded. Jacob said his x-rays went fine, but they had to do two different series because of conflicting orders.

Next was the delayed MRI scan. Jacob has had it in the past, but not for a few years. They use it to view where contrast shows up in the brain. I've never been given results from this, but I know they use it for the study. Jacob said he took a nap in the scan and it went by fast. It was only about half an hour.
I was looking forward to our next appointment. Jacob was scheduled to see the oncologist fellow at 11:30 and Dr. Kathy Warren at 12:00. The fellow was very nice and asked Jacob a gazillion questions and did an exam. I had a million questions for oncology. I wanted to know what their opinion is on the chemotherapy choices we've made for Jacob and I wanted to know what other NF2 patients were doing, what, if any, new options are available. The fellow couldn't answer my questions and Dr. Warren was not going to make it to see Jacob. She was going to be tied up the rest of the day. We've spent the last three years rehashing Jac's NF2 for them in oncology and yesterday I needed something back and didn’t get it. I was not happy leaving clinic.

Our evening went by fast. Casey wasn't able to make it to visit because of a suicide attempt on a bridge somewhere between her house and NIH. The road was shut down. I'm glad to know the troubled person did not jump (or hurt anyone else) and is hopefully getting the help he needs. There was a nice family dinner at the Inn and I spent several hours chatting with Becky, Savannah's mom. I enjoyed Facetime with TD and Gavin and got to talk to Brie briefly. Jacob and I made smoothies at midnight and I finished laundry.

It was a nice morning, being able to sleep until 8 and being woken up with sun rays beating down from the crack in the curtains that I didn't close all the way. It isn't cold either.

We're one day closer to being home and I'm so regretting not bringing my running shoes!

Monday, January 7, 2013

The wifi is not working well at the Children's Inn tonight, so I'm going to do my best from my phone…

I'm not going to complain about how tired I am from not sleeping well and then being up at 5:30 am for Jacob's chemo dose, and then again at 6:30 am for clinic. I could be sleeping and not writing this post while watching football, so that was not a complaint! And, whoa, what a game for Bama. Notre Dame is making Alabama’s entire team look like professionals tonight. Looks like TD is going to win his bet, or really his series of picks, which isn't much, but I still want to dance a little jig and sing “show me the money.” Hehe!

For an all-day adventure at Clinical Building 10, today went fairly well. Jacob got up without a fight and we were at Peds Oncology by 7:55. It wasn't early enough for me to have time to get coffee, but I survived. Jacob had some donuts that I picked up on our way out of the Inn and, for the first time in 3 years, we rode the bus up the hill instead of walking. Jacob didn't want to walk. He's lost so much weight, any activity has become tiring. We originally thought the weight loss was from surgery, but since its continuing I'm worried it's medicine-related. I've talked to Jacob's nurse at Arnold Palmer and we will be discussing a possible seizure drug change after Jacob's appointment in Orlando in a few weeks. There is one other seizure medication that can be taken with the chemo he's currently on. Back to our day… We rode the bus and proceeded to sit in clinic for an hour, waiting. Our wonderful, on-top-of-everything nurse, Kim, wasn't in today and they couldn't find Jacob's paperwork for his labs. Finally, Rovella, our research nurse, came down and brought the needed paperwork. I was happy to see Rovella and we had a nice chat. Rovella called up to Audiology so Jacob could get bagels and I could get coffee.

While Jacob finished up his second breakfast, I talked with Chris, Jacob's Audiologist. For some reason they switched Jacob to balance testing today. After only an hour, Chris and Jacob appeared due to a broken monocular camera. One of the machines they use for vestibular testing uses data collected from the eyes, with Jacob only having one eye, they have to use a singular camera to obtain accurate information. So Jac will go back on Wednesday for hearing and more balance testing. Chris did say that even with inconclusive testing, Jacob's balance has definitely changed for the worse. He explained the three ways our body and balance work as a whole. Since Jacob's vision hasn't changed and his vestibular senses (hearing and balance nerves) still really have no response, Chris believes that it's postural structure causing J's balance issues. I thought this was good news because if the stumbling and losing his footing is from his surgery in August, then hopefully it has nothing to do with his vestibular schawannomas growing. It also means that it’s possible with aggressive therapy that his balance could improve. None of this information is confirmed, but it's all I know for now. Time for EVERYONE to encourage Jacob to start working on his posture and strength!

After OP5, Jacob and I had lunch. I am on Mission: Feed Jacob, as the rest of the family is. He initially lost 10 lbs after his cervical surgery in August and never gained it back. We spent several months talking with Jacob about making good food choices, eating more often and consuming more protein. We put him on protein drinks. Over the holiday, I haven’t been so persistent. I let Jacob sleep as late as he wanted, stay up late and do his own thing. I wanted his break to be stress free. He had meals with us, and I assumed everything was continuing the same, but I wasn't trying to get him to eat constantly. Last week I noticed he looked thinner and had him hop on the scale. I was shocked to tears that he was down to 105 lbs. After that, we have all been back on the mission. I was so happy that he was back up to 110 lbs yesterday morning in clinic. (He's been 112 lbs since surgery in August.) Jacob and I had plenty of time to eat lunch and relax on the sunny side of the basement cafeteria.

Jacob's MRI started right on time at 12:15 and, as usual, he was not done in the two hours promised. It's always a lie!

After MRI we went back to Peds Oncology to have Jacob's port de-accessed and got our freedom.

Jacob and I hit up the second floor cafeteria for a second lunch and ran into Dr. Kebebew. He saw us separately and Jacob told him he was doing "great." My response was, "not so great." Dr. Kebebew said he would look at Jacob's MRI from today and see if there is anything he has to offer Dr. A. I should’ve talked to him about the numbness in J's abdomen, but I didn't think it was the right time.

Our afternoon and evening have been relaxing. I spent a long time working on Team Jacob G!: Battle NF2 Cupid Undie Run Orlando donation site, sending out emails and such. Jacob and Savannah hung out and seemed to be very happy.

Tomorrow Jacob has a CT, his last MRI and an appointment to see Dr. Kathy Warren in Oncology. I’m looking forward to picking her brain about the medicines (and side effects of said medicines) that Jacob is on.

NIH clinic day one, check!

Sunday, 01-06-2013

Jacob and I are in flight to DC as I type this note. My heart is heavy with worry about what Jacob's tests and scans will tell us this week. My mind is racing with all the things I need to ask about and with what is going to be required of us next. My biggest fear is leaving without answers and without a definite plan.

On a much brighter note, our flight was quick and easy. Casey and family were at the terminal when we arrived in DC and the temperature was surprisingly mild outside. We had a comfort meal of chili dogs, big bowls of different types of chili and chicken wings. Everyone was disappointed to see the Redskins lose their playoff game, but seemed satisfied they had a great season. We’re wishing for strong healing for RGIII to return next year for a productive second season and lots of points for TD’s fantasy football teams (Amen!). Jacob and I enjoyed chatting with Ben, Casey and their girls and were very thankful to make a few happy memories before starting our stressful week. Thank you, Ben, for treating us to dinner at the Hard Times Café!

I love our room at the Children's Inn. It's in the "D" wing and overlooks the front of the Inn. I'm not sure why it's my favorite... Maybe because it’s the first wing we ever stayed in three years ago and it's the closest to the playroom. Maybe it's because it's the smallest area or the oldest part. Whatever the reason, I was very happy to get the key to D5. Oh, and it has a bath tub! After running 13.4 miles yesterday, a few Epsom salt baths will be necessary this week! A lot of the rooms here only have showers, which I know is important for handicap kids, but I'm happy to have a good ol’ tub this visit!

Jacob enjoyed hanging out with Savannah tonight and playing videos games. I didn't know she was going to be here, so it was a nice surprise when Jacob told me on the plane. I had a nice chat with Rebecca and got settled into our room.

Tomorrow Jacob will have blood work, an audio gram and abr testing for his hearing. In the afternoon, he will have a brain and spine MRI with and without contrast. Our groceries will be delivered (hopefully) before 7 pm and we will be ready for the last college game of the year. I'm forced to root for Bama. I really want TD to win his bet!! :)

Signing off to do my scripture reading and hopefully get a few hours of sleep. Really missing my goodnight kisses from TD, Brie and G and having G snuggled up to me sweetly sleeping.

Peace from Bethesda.