Thursday, December 10, 2009
Wednesday, December 2, 2009
Morning came very quickly. I woke up not feeling very rested at all. Our room was very nice, very quiet, and the beds, for the most part, comfortable. There’s just no place like home.
Jacob’s 1st appointment of the day was at the Eye Clinic, with Ekaterini Tsilou, MD. We checked in on the 11th floor and then were sent down to the 10th floor for an eye exam and vision screening. It was the same song and dance Jacob has done 100 times before, but the results this time left me pleasantly surprised and extremely happy. During the 1st round of tests the tech turned on a lighted box, which looked a lot like an x-ray viewer, except it had rows of letters and numbers on it. It was bright white with bold black letters. He asked Jacob to read the smallest line possible. Jacob looked at it for a minute and started to read. I wish I could have seen my own reaction. Not only was I shocked that Jacob could read any of it at all, but blown away at how small the line was that he did read. Jacob and I exchanged looks. I asked Jacob, “Seriously? Are you guessing?” He was like “What?” He hadn’t even realized his peripheral vision had improved so much. A month after surgery his vision had only improved from 20/400 to 20/200. Now, WOW! What a difference. I had prayed for Jacob to not loose any more vision and for the surgery to at least help him keep what he had left. My mom on the other hand has told me many times she is praying for Jacob’s sight to return to him completely in his left eye. God was meeting us in the middle. Jacob’s vision is now at 20/63. Answered prayers! Thank you Lord! Thank you, Dr. Pincus and Dr. Lewis. Jacob still has to take a minute to look at whatever he is trying to see and the black on white contrast makes a huge difference, but the improvement is clearly there. The meningioma is still on the optic nerve, but obviously Jacob’s optic nerve is truly more “happy,” as Dr. Pincus worded it, and it is sending much better signals. This news made my day!
After the eye exam, the tech took Jacob to do an automatic fielding test and sent us back upstairs. We met with Dr. Tsilou and went over Jacob’s eye medical history. It is the longest and most detailed of all his medical information. Jacob then had his eye numbed, pressure checked, pupil dilated and photos of his optic nerve taken. Jacob’s pressure was good, but his optic nerve is still showing a little paleness. The rest of his eye looks healthy and the drusen was not seen. The doctor also measured how far Jacob’s left eye ball was sticking out from its socket. She said that meningiomas on the optic nerve have been known to cause the eye to protrude. She said they would watch it and Jacob’s measured pretty normal. We were done with the Eye Clinic and it was time to go to the Ear, Nose and Throat Clinic and see Jeff Kim, MD.
Once again we didn’t wait long. Jacob was put right into a room. Dr. Kim came in and asked us the same questions we had been answering the past few days. He looked at Jacob, his skin, his tongue, Jacob’s nose and his ears and with Jacob’s permission took pictures of Jacob’s visible fibromas and café au lait spots. He informed us that the once thought cyst on Jacob’s tongue is not a cyst, but a fibroma. Dr. Kim went over Jacob’s scan and confirmed that Jacob’s vestibular schwannomas (VS) or as I usually call them, acoustic neuromas (ANs, or simply the ear nerve tumors) are growing. The right side is around 9 mm and the left around 7 mm. Dr. Kim believes that there is another tumor, along with the ones already seen, on the right side inside the inner ear. This was not good news. He went on to explain to me that the balance nerve, the facial nerve and the hearing nerve are all in the same area. They believe the VS start on the balance nerve and then take over the other nerves when they start growing. He discussed why they do surgery and some of the different results. Most patients lose hearing after a VS removal surgery is done on that side. If the hearing nerve can be saved during a VS removal then a cochlear implant (CI) can be placed. A CI is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. The cochlear implant is often referred to as a bionic ear. We also talked about an Auditory Brainstem Implant (ABI). The ABI, like the CI, replaces part of the hearing mechanism that is not working properly. Whereas the CI is implanted in the cochlea and replaces the function of defective cells, the ABI is implanted in the brainstem, and replaces the function of a defective auditory nerve. It is used most often in patients who become deaf due to NF2, because NF2 causes tumors on the cranial and spinal nerves. Removing those tumors often requires severing the auditory nerve, which destroys the hearing in the affected ear. Bilateral surgeries can destroy the hearing in both ears. Traditional CIs are ineffective in these cases, because they rely on the auditory nerve to transmit signals from the cochlea to the brain. But the ABI bypasses the auditory nerve to inject acoustic information directly into the brain.
Jacob’s case is complicated because of the schwannoma growing at the bottom of Jacob’s brainstem/top of his spinal cord and because of his visual loss. They are not recommending any surgery at this time, but will be watching them closely. The tumor on the right side in Jacob’s inner ear can not be removed or debulked with out taking his hearing. More bad news.
Later, Jacob had vestibular balance testing – which was really cool. We also had a very nice dinner at the Double Tree Hotel this night. I will write about both of these later. I have to run for now, but I didn’t want to wait any longer to post the good news about Jacob’s vision.
Day 4….to be continued!
Wednesday, December 9, 2009
Tuesday, December 1, 2009
I was so tired from not sleeping the night before and I had a very hard time waking up.
Today Jacob was to have a MRI of the brain, spine, and brachial plexus under anesthesia with and without contrast.
We were supposed to be at the Children’s Day Hospital at 7:00 am to get ready for Jacob’s 3 hour MRI under anesthesia, but we didn’t get there until 7:20 am. I’m not sure why I thought I would be able to get us all up and ready in only 20 minutes. Jacob couldn’t eat or drink so it only took 40 minutes, but regardless we were still late. The nurses didn’t seem phased at all that we were running behind and welcomed us right into our room. Jacob was a nervous wreck about having an IV placed and wondered how many times it would take them to get it right. (Sometimes at Shands it can take 3 or 4 times for them to get it in.) Jacob’s nurse got the IV in on the very 1st stick, on the very 1st try, quickly with very little pain!! They didn’t even use any numbing agents. Jacob and I were so happy that was over and went so well. Jacob changed into some very fabulous paper hospital pants and we walked from the Day Hospital to MRI Imaging. We only sat for a few minutes waiting for them to take him back to the MRI room he would be in for the next few hours. I met with the Anesthesiologists doctor and completed paperwork and a long questionnaire. Since Jacob’s craniotomy, he now has a small amount of titanium hardware in his skull and they have to ask you a thousand more questions than usual. They put Jacob on the table awake and G and I stayed with him until he fell asleep. Jacob was only given an IV anesthesia called Propofol anesthesia and no breathing anesthesia. It only took a minute for Jacob to fall asleep after I kissed him and wished him sweet dreams. It is always hard to watch them put Jacob under anesthesia and walk away. I am left at that point to be alone, without Jacob and think about his NF2 and why he is having a MRI. It breaks my heart to see him lying helpless on the table bed with the huge machine surrounding him and monitors and such attached to him. It’s hard to explain, but is not a sight I wish for any mother or parent to have to see.
The MRI started at 8:10 am. The doctor taking care of Jacob told me to come back at 11:00 am and if anything changed he would call me. Gavin and I went back to the Inn. I ate breakfast. Then I took G outside to play on the outside playground. He loved the baby swing, but because everything else was so wet from the rain the day before he wasn’t able to get down and crawl around. We sat by the huge Holly tree and watched all the birds flying in and out of it. They were singing and making a lot of noise. G and I found it very entertaining. We went back to our room so I could fold laundry from washing the night before and put G down for a nap. I ended up falling asleep too, but for only 25 minutes. I was very upset when I got back to MRI at 11:00 and the doctor told me they would be taking 45 more minutes of scans. G and I could have been sleeping all that time!! The doctor apologized for not calling me. He also informed me Jacob would not be coming back that evening. Jacob was originally scheduled for a second brain MRI that evening without sedation and without contrast. They usually do this for comparison. The head Radiologists decided during Jacob’s scan that they would go ahead and do all the scans at the same time and didn’t need ones later. I was happy it could be done this way. I was thinking about our afternoon and what we would be able to go and do..Maybe the Washington, D.C Smithsonian Zoo!! Gavin and I waited and when Jacob was done having the MRI we followed him up to Anesthesia recovery. He was sleeping so peacefully. I kissed him again and told him I would be waiting for him to wake up. G and I sat in the waiting room for a very long time it seemed and we were finally called back. Jacob was still sleeping. He continued to sleep for over an hour, even with G and me messing with him. He finally woke up and decided he was very hungry and super grumpy. After he ate some crackers and juice he was sent back down to the Pediatric Day Hospital where we had started that morning. A very nice nurse had reordered Jacob’s food request from that morning: Cheese burger, French fries, and a milkshake. It was very late in the afternoon at this point and the original order from 11:00 am had gotten cold. The nurse ordered 2 of everything (3 cheese burgers) so Jacob and I sat and ate together. Jacob said very little and was more irratated than usual after anesthesia. I knew at that point there would be no trip to the Zoo that afternoon and that Jacob had been given a little too much medicine. Jacob insisted to his nurse that he was ready to go, so she made him walk around, use the bathroom and put on his pants alone to prove he was fit to be released. At 3:30 pm we made our way back to the Inn. I had to make Jacob lay down for a bit. He still felt like he was 10 feet tall, but was mouthy and unsteady. We all took a nap.
Tuesday evening turned out to be a nice night. A nearby Cancer center came and made Tacos for the families and once again there was fruit and yummy dessert. We sat and ate with a nice family from Tennessee. Their 3-year-old son’s name is Corbin and Gavin enjoyed watching him. Jacob played video games with David and Corbin’s dad until late and Gavin and I went down stairs to play in the under the stairs soft block room. We also met Viola, the Inn’s beautiful Golden Retriever Tuesday night. We sat and pet her for a long time. She enjoyed licking Gavin’s left over dinner from his face.
I can assure you that I had no trouble falling asleep Tuesday night, Gavin stayed in the bed with me and we didn’t wake up until early morning.
Another day down and one more day closer to getting home to Tallahassee. I was ready for Gavin, Jacob and I to be back with Brie, Thomas and Grissom.
Wednesday we would have an appointment at the Eye Clinic, an appt with the Ear, Nose, and Throat doctor and Balance Vestibular testing.
Tuesday, December 8, 2009
Day 1 and 2
Sunday, November 29, 2009
Up at 6:20 am....TD, Jacob, Brie, Gavin and I were off to the Tallahassee Airport, arriving at 8:05 am.
Mom and Dad met us at the airport to wish us well and watch us take off.
The Delta representatives were very nice. They helped me check in our baggage and get our boarding passes. I was very worried about getting on the plane with my precious boys and felt sick to my stomach. (Even though I have flown many times before) I was sad about leaving the other half of my family for a week, but I kept reminding myself it was for a great reason - the beginning of a new journey - a new phase in our war against NF2.
Getting through security was a pain. They checked Gavin's baby food and my water bottle, had to look through my backpack and Gavin's diaper bag and they made us take off our shoes. They don't even bother to let you go through with your shoes on anymore, they have you place them through the X-ray machine. The security officers had to look at all of our electronics and Jacob and I had to take off our jackets. I also had to fold up the stroller for x-ray. After all that we made it to the gate by 9:00 am. We boarded 1st at 9:10 am. Jacob and I were given the very 1st seats on at very small jet and we learned very quickly that our carryon bags were not going to fit under or over our seats. I thought that they could just sit at our feet, but I was wrong and almost lost it when confronted by the stewardess. I was very frustrated because Jacob was holding Gavin while I was trying to figure out where to put our things and Gavin was screaming. After the help of a very patient flight attendant and some rearranging of our stuff, our bags found places on the plane and we were on our way to Atlanta.
Gavin and Jacob were awesome. Jacob was nervous, but as soon as the plane took off and we were in the air Jacob was fine and even told me he thought take off was pretty cool. Gavin sat like a big boy in my lap, chewed on his toys, nursed and fell asleep. I couldn't of asked for better behaved boys. After being in the air for only 30 mins we landed in Atlanta....smooth flight and smooth landing. There was even a nice man (and his wife) who helped me by carrying G's stroller up the stairs into the airport. (Yes, that is how small our 1st plane was...it didn't even have a walk through.)
Atlanta airport was packed. We made our way from the D terminal to the A terminal. Jacob and G both liked riding the underground train. Jacob ate burnt pizza and I had bad coffee, only later to find that there was a Starbucks right by our next gate. Our walked from the train to the gate seemed long because we had so much crap, but we made it and found a nice spot to sit in front of the window. I fed Gavin his cereal and pears and let him get down, stretch his little legs and crawl around. Before I could even relax it was time to get back on a plane and be on our way to Ronald Regan Airport in Washington, DC.
The plane to DC was huge and completely full. We had more room to put our stuff, but were still squeezed in like sardines. The take off was much easier to swallow this time and the flight went by pretty fast. Gavin wasn't happy at 1st being restricted again, but gave in and repeated his same routine from the 1st flight. Jacob and I listened to music TD downloaded for us the night before and G slept. My arm felt like it would fall off from holding G by the time we were getting ready to land in DC and G woke up about 30 mins before we landed and graced us with a dirty stinky diaper. I figured if that was the worse thing I had to complain about regarding our flights I was very lucky.
Another smooth flight and landing was behind us. We had arrived at Ronald Regan National Airport in one piece. I hurried to the bathroom to change the dirty doody and then rushed to the baggage claim. I was determined to make the 3:00 pm shuttle. I was starving and pushing through with a horrible headache. The pressure from flying is rough on my head and ears. I was so relieved that we got everything done and were able to make the early shuttle.
The ride on the shuttle to NIH in Bethesda, MD was very nice after G stopped crying about being in his car seat again. Jacob and I tore into the bag of goodies Nana and Papa had given him. We ate all of the cheese, crackers, and summer sausage...also the brownie, and m & ms, only noticing the no food or drink sign after we were done. Looking out the window at the slate rocks on the edge of the rivers and the bare trees, the view looked just like winter should look. The houses were huge and beautiful. It was getting late in the afternoon and was very gloomy outside. I was ready for dinner, a hot shower and bed.
The Children's Inn was awesome! Our room was very nice with lots of space. It had two double beds, a desk, dressers, a Pack N Play for Gavin, TV and Wifi. There was even a sitting chair with an ottoman in front of a huge window. We had plenty of room for Gavin to play and a place to put the stroller and all of our stuff.
That night a church came and served dinner for all the families at the Inn. We ate hot dogs, hamburgers, salad and fruit. Jacob quickly made a friend, David, from Georgia and spent most of the evening playing games in the Teen Room with him. Gavin and I explored the Inn, stopping to play in the common areas built just for little ones. I did my nightly prep, getting Gavin's bag ready for the next day, lunch, diapers, wipes, toys, etc. I looked up all of Jacob's appointments, laid out our clothes, took baths, etc. I had to round Jacob up and make him come in at 11:00 pm - he was having so much fun, but our Monday was going to be busy.
Monday, November 30, 2009
I woke up at 3:45 am to feed Gavin and couldn't go back to sleep. I laid in bed, thinking, wondering how our first day at the huge National Institutes of Health would go. I woke Jacob up at 6:30 am and got Gavin and myself ready. We bundled up and decided we would walk up the hill to the Clinical Center instead of taking the shuttle. It was supposed to rain, but it was only 7:30 am and hard to tell how the weather would be for the day.
Our morning went very well. We didn't wait long for any of our appointments and everyone was very nice. From 7:30 am to 1:30 pm Jacob did the following: Admissions to NIH, Blood work, Outpatient work up, New Patient work up, Pre anesthesia, Audiogram and ABR testing. I also managed to squeeze in a visit to the Voucher office and we went to the Security Center to get our yearly badges. We did a lot of paper work and answering questions. Jacob was nervous about having blood taken and the many viles of blood they took from him, but the nurse was very good and didn't hurt him at all. As for his hearing appointments, they weren't anything he hasn't done before and Jacob even got to take a nap during the ABR testing. We learned during his hearing testing that he has had a slight drop in hearing on the right side, but at this point it isn't anything to be concerned about. (Jacob’s last normal Audiogram was in July of this year) Gavin was awesome during all of this - riding in his stroller, eating cheerios, walking around the chairs and couches, chewing on his toys and sitting in my lap. The NIH Clinical building is very large -the only thing I can compare it to is Florida State campus. It is very clean and decorated with what I consider to be modern art, but still warm and calming. It appears they put in a lot of thought to the decor. The architecture is also very modern and open. Everyone we came in contact with was polite, educated and appeared to know what they were doing. Our day of appointments went by very fast.
After having lunch in the cafeteria we went back to the Inn to regroup. Jacob and I decided we would take the Metro Subway into Washington, D.C as a trial run for later in the week. It was really cold and started to rain, but we went anyway. It didn't turn out to be a very pleasant trip. Even from the start. I was unable to find an elevator to take us down the 200 ft into the subway system. I had to fold up Gavin's very heavy stroller and hold it and Gavin down the very steep escalator. Trying to figure out how to buy tickets from a machine with a fussy baby was a task too. Once on the Metro I held Gavin until he fell asleep. The closer we got to D.C the more full the train became. We decided we would get off in Chinatown. While approaching the Chinatown stop the conductor came on over the intercom announcing a person had been hit by a train at the Chinatown station and to expect delays. When we exited the train people were running to see the accident, there were firefighters, and police officers all around. We held onto each other and made our way up to ground level. The weather was terrible. It was raining and cold. Jacob and I put our hoodies up and I covered Gavin with his blanket and put his skully on. Jacob had also brought an umbrella that I held over Gavin while pushing the stroller. Gavin decided he was miserable and who could blame him. I ended up carrying him most of the rest of the way so he wouldn’t cry. We tried to walk around, but the weather was too bad. Jacob was very excited to see the busy city, but agreed that it wasn’t good for us to be out in the cold rain. We ended up going into the Smithsonian to warm up and get out of the rain. Too bad it was the Museum of Art and didn't have anything super cool that Jacob wanted to see, other than an amazing covered courtyard. We walked back to the train. The admissions machine ate one of our tickets and I had to jump over the gate with the stroller and hand Gavin to Jacob after he went through.....the station was packed because of rush hour. It was a nightmare. People were pushing and we waited through 3 trains. Finally we made it back to the Inn and Jacob had an interesting story to tell about his 1st time on a subway in the big city.
We ordered take-out and it wasn't very good. I was excited that our groceries Gina had ordered for us would arrive soon (between 7 and 9). We got our groceries and repeated our nightly routine.
I was exhausted but very pleased with Jacob, Gavin and myself. We had survived our 1st day at NIH, the nasty weather and the DC Metro subway!
I was ready for some sleep and whatever Tuesday would bring.
(Will post Day 3 - 6 soon)
Tuesday, November 17, 2009
Boy Scout Camp Out
Hall Farm, Midway, Alabama
November 13-15 2009
I had the pleasure of going on the Troop 23 November Camp Out with Jacob to Mr. Matt Hall’s Farm in Midway, Alabama, about 40 miles northwest of Eufaula, Alabama, this past weekend. I was looking forward to spending some relaxing, quality time with Jacob, and I couldn’t have asked for a better weekend.
Jacob is working very hard on his rank advancements, and one of the requirements for Second Class (and one for First Class) is to plan the meals for an overnight camp out, volunteer to buy the food for a patrol, supervise the setup of the cooking area and cook breakfast, lunch and/or dinner for the patrol. Jacob graciously volunteered during the Monday meeting, and we stuck around afterward to get the grocery list for the trip. On the Thursday night before we left, we went to Sam’s Club and Walmart to purchase the breakfast (eggs, cheese and sausage on English muffins and cereal), lunch (ham and turkey sandwiches, chips, condiments and snacks) and dinner (green beans for 30 people) foods. Jacob learned a lot about budgeting and looking for deals! We packed the cold stuff in a cooler and brought the rest in a large box for the patrol. It was a nice way to get involved and Jacob did a great job staying within the budget.
FRIDAY THE 13th
Our trip started on Friday the 13th. We were asked to be at Killearn United Methodist Church at 4:30pm so that we could pack and leave by 5:00pm. As most things do when dealing with 18 scouts of varying ages, it took a little longer than expected to get gear, fishing poles, food and scouts loaded and ready to go. The Pack 23 Webelos were invited on this overnighter as their first experience with the Troop 23 Boy Scouts. Needless to say, there were a lot of scouts on the bus, and with the Cub adults riding, there wasn’t enough room for all of the adults. I rode with Mr. Hatchett on Friday, and it turned out to be a nice ride. We left KUMC at 6:15pm looking forward to the impending 4 hour trip to the farm. We arrived at the Hall Farm around 9:20pm central time, staring into a pitch black field where we would set up camp for the weekend. It was exciting, not knowing what the landscape looked like, or where the lake was… All I could hope for was that no one fell in! CD and Matt Hall warned us about cow patties and fire ants, not exactly a great combination while trying to set up tents in the dark! We set up camp in the light of the propane lanterns, unpacked our bags and called it a night. Jacob camped with Marcus Hatchett, and I had a tent to myself. I was told that it was going to be cold. Cold was understatement!
After a night of shivering, I was up at 5:00am on Saturday. Surprisingly, I wasn’t the first one up. The sun was coming up already and you could see the lake and the landscape, and it was beautiful! Tim Hall had already caught two bass by the time I got dressed and rigged our poles. I woke Jacob up and we walked the 30 yards to the lakeside, a lot closer than I had realized the night before! Jacob had his new black and red Boo-Yah spinnerbait, and I opted for the black and orange mini rapala. It was later discovered that neither of these worked worth a damn! Tim caught a total of 8 bass Saturday morning, all on a small rooster tail. Of course, when the other rooster tails went on poles, nothing was biting. Tim obviously had the scoop on the timing and tactics.
CD decided to blow the whistle for the wake-up call around 7:00am. Most everyone was up already, but those that weren’t were quickly dressed and standing under the cooking tents. The boys broke into 3 patrols and began setting up the propane stoves on the “patrol boxes,” the work stations for each patrol. Coolers were unloaded and the boys started cooking. Jacob and Danny, the senior patrol leader for the camp out, went to work cooking sausage and eggs, cutting the muffins apart, getting the cheese ready and making the breakfast sandwiches for the 6 scouts in their patrol. Jacob was involved in all the steps, and it was really nice to see him working hard to earn his rank. I was really proud that Jacob didn’t complain or get frustrated, and he set a great example for the younger Cub Scouts in the patrol. Aside from my new, broken cooler (which no one could recall how it got broken), everything went as smooth as it could’ve. CD cooked for the adults, and in the cold weather, bacon, eggs and toast did the trick! We all ate around the fire and resumed fishing. Because Jacob did the cooking, he did not have to clean up afterwards, as is the rule of Scout camping. I think he finally realized why I love coming home and cooking! While the others cleaned up, we took a walk around the lake and tried our luck at different spots. Some of the scouts caught bass and blue gill, but up until about 11:00am, Jacob and I still had our skirts. I decided to switch to my skinny green worm with a weighted jighead. The bite had stopped for about 30 minutes, but I still fished, and around 11:10am I caught my first bass of the trip. He was a little guy, but he looks huge in my story! Jacob was a little disappointed that he hadn’t caught anything yet, and he moved across the lake to try another spot. I walked over to him and he was reeling in his purple worm, looking distraught. Right as the worm came up to the top of the bank, Jacob got his first bite and caught his first bass! He was stoked, so I left him to keep fishing. Most importantly, no skirts!
CD, Lyle and Mike had been setting up the “Amazing Race” challenges for the boys to compete in after lunch. I was double checking that the necessary equipment was at each station, so I missed Jacob’s “Biggest Bass of the Weekend.” The Cub Scouts were impressed and it was nice to see Jacob so happy. It was a 2.5 pounder, a nice size for the little lake we were at. CD called the boys in to make sandwiches and eat lunch, and explained the competition while we were all gathered. The boys were separated into 2 teams for the competition. There were 13 tasks that had to be completed, each with their own set of rules. Some of the tasks included buddy-walking, building a ladder from wood and rope, and making a stretcher to carry a “wounded” scout back to camp. The boys practiced knot-tying, orienteering, fire starting, flag pole building and most of all, teamwork. Tim and Danny did great jobs keeping their teams together and making sure everyone was involved. It was a great challenge, made even better by the fact that all the scouts had a great time. Good leadership made the activities possible, and CD did a great job planning and executing. It was a blast!
The competition ended as the sun went down. It was time for our dinner! CD fried turkeys and each patrol brought a side dish. We had Turkey, stuffing, corn and green beans for dinner. CD made a dutch oven dump cake for dessert. It was delicious, especially since the temperature was rapidly falling into the 40’s. We sat around a campfire for a long time. There was a meteor shower on Saturday, and a few of us did get to see some shooting stars. All of the stars were out, and it was a nice ending to a great day… even though it was only 7:30 pm! With all of the activity and early rising, bedtime came early for everyone, as soon as the Georgia-Auburn game ended!
“I will not be cold,” I told myself. Jacob decided he was sleeping in pants, socks and jacket. I chose to go with the wool socks, basketball shorts, 2 long sleeved shirts, a skully, and ear covers, with my jacket pulled over my head. We beat the cold Saturday night.
Much like Saturday, we woke early and went fishing. It was colder than the morning before and since we had to pack up, I watched Jacob fish more than I fished. I began packing us up and taking off rain-flies to dry. It was very wet for being so cold. The scouts had cereal and the adults had another delicious hot breakfast cooked by CD. The coffee might have been the best part. Matt Hall is preacher at Canopy Roads Baptist Church, so we were able to have an amazing church service around the campfire. Mr. Hall’s message was simple: Be remembered. He tried to instill in the scouts the desire to complete tasks, to never quit, and to try to do the best you can, always. Great men are remembered, and scouting lays the foundation for great men.
After our service, fishing resumed. Some scouts caught blue gill, but not much activity otherwise. There was a lot to do to get ready to go, and all the scouts pitched in to get everything dried, taken down and repacked. A few hours and we were ready to hit the road. A few more pictures and it was time to go. We left around 11:15am Alabama time. I rode the bus this time, which was cool. I got to spend a little more time with Jacob and his buddies on the bus. We ate lunch in Eufaula and then poked home. We finally made it to Tallahassee around 5:30pm. It was a long day in the bus.
I was grateful to return to my wonderful wife and son, who were waiting for us out in the yard (with dinner cooked!). Jacob and I missed our family very much. We do a lot together, and it’s not very often that we’re away from each other (at least Tammy and me). It was well worth it though. I am thankful that I got to spend time with Jacob away from all the crap he puts up with everyday. We got to hang out, and it seems like these times are happening less and less as we all grow up. I was reminded how lucky I am to have such a great family. I am proud of Jacob for sticking with scouts and for wanting to advance. He showed leadership and determination this weekend. He was my best friend again, hanging out and joking around. I wish life could be a camp out every day. But as a wise and wonderful woman often tells me, if life was easy every day, we wouldn’t appreciate the good times as much as we do.
(Written by Thomas aka TD)
Wednesday, October 21, 2009
On the way to G-ville I managed to make several necessary phone calls and make my mom very nervous about my driving and talking on the phone in the process. I did get needed information from the Division of Blind Services (whole different story) and I did find out that Jacob's MRI wasn't where I thought it was going to be (there are two different places Jacob goes for MRIs). I also found out that the orders they had on file didn't call for contrast. Jacob's MRIs always call for scanning without and with contrast. So after another call to the neuro surgeon's office that was straightened out.
We arrived at MRI early and they took Jacob back within 10 minutes. After changing into his gown, Jacob informed me that he wasn't in the mood for an IV today and he shed a few tears. After the "it's always worse in your head pep talk" Jacob willingly went to have his scan. They took pictures without and with contrast and Jacob said the nurse tech who placed the IV for contrast didn't hurt him at all. My mom, aka Nana sat with Jacob the entire time and she said Jacob sat perfectly still. Brave Young man. Everything went just as it was supposed to go and we were in and out of MRI within just a little over an hour.
Next Jacob had his post op appointment. As usual we met with the nurse, then a resident and then Dr. Pincus, who said Jacob looks fantastic! Also Jacob is now over 5'3 ft tall and officially taller than his mama! Dr. Pincus also reviewed the scans Jacob had just had and said the tumor in question, at the bottom of the brain stem does NOT look like it has grown or changed. Whew!! Fireworks, let's cheer. Great news and answered prayers. We will be toting the prayer blanket crocheted for Jacob from the ladies at Good Shepard with us everywhere. I do have to call on Monday to confirm Dr. Pincus' opinion with the radiology doctor's report, but Dr. Pincus was very confident in his findings.
The other good news we received was that Jacob can go hunting, ride roller coasters and fly on airplanes. TD was thrilled to know Jacob can once again take out the trash. I was also very happy that Dr. Pincus said that once Jacob starts his scans and appointments at NIH we can bring those scans home and Shands can put them in their system. If Shands is happy with the NIH scans then Jacob will only have to have the scans at NIH. There were a few questions I forgot to address, but I will save them for next time. By the time we saw Dr. Pincus Gavin was no longer happy and the little Captain Cranky Pants I put in the car seat that morning had returned. G did finally pass out as I was running around the hospital trying to get the surgery records and recent scan copies for NIH. That was a much needed nap!
For those of you who don't know we finally got our dates for Jacob's first trip to The National Institute of Health in Bethesda, MD to participate in the 5 year NF2 study there. Jacob, Gavin and I will be leaving November 29 and returning on December 5. I will take notes and hopefully blog all about it when we get home.
For now though we are excited about Chason spending the night with us tomorrow, Granma Gina visiting this weekend, Jacob going hunting with Pop Dana and Gavin's 1st Halloween next weekend.
Thank you, Thomas for helping me get Brie to and from school today and taking such good care of her. I'm so lucky I have you. You are precious to me.
Saturday, October 17, 2009
On Monday Gavin had his 6 month appointment with our primary doctor, Julie Kelch. My baby boy weighs 17 lbs 8 oz and is 27 1/2 inches tall. He is in the 75 percentile for a breastfed baby and is super healthy. Gavin has reached all the milestones of a 6 month old baby and then some. He has been sitting on his own for over a month and is now getting up on his hands and knees rocking. He also knows his name, is curious to what is being said around him and is incredibly social. Gavin is throwing down toys and objects to watch them fall and to see what happens once they do. He is passing objects from hand to hand and using both hands to hold things. He is also getting things out of his reach by scooting and rolling and he is feeding himself bitter biscuits. Busy Busy.
Saturday, October 10, 2009
Brie's Science Research class was studying plant and animal cells. They had an assignment to create an Incredible Edible Cell - plant or animal. Brie chose to do an animal cell.
Friday, September 18, 2009
Day 1 post-op was another very long day. Jacob spent most of the day in the PICU. I returned to the hospital around 8:00 am to find a very hungry, grumpy Jacob and a tired TD. Jacob was unable to eat the breakfast that dietary brought him because his jaw, teeth and head were causing him so much pain. The left side of Jacob's face was starting to swell and he was unable to see. The nurse started him on Motrin and Tylenol and was only giving him Morphine and Zofran if he complained. Finally after hours of waiting the nurse brought in packets of seasoning to make broth and red and yellow jello (I called Jacob's dad at 7 am, on my way to the hospital and asked him to bring Jacob soup and jello. He said he would, but didn't show up until 3:30 pm because his wife was sick.). Jacob was so happy to finally put something in his tummy and I sat and fed him several bowls of broth and many cups of jello. Not being able to eat was a huge deal for Jacob. He loves to eat and gets excited about what he is having for lunch and dinner, not to mention the hospital nursing staff was constantly asking us how much has he had to drink, how much has he eaten and measuring his pee. Which brings us to another subject. Jacob was unable to get out of bed the night of surgery and he wasn't catheterized. They provided Jacob with a lovely bed jug. It became quite funny by the end of the day... even Jacob was laughing, and crying because it hurt so bad to laugh.
My Mom and Dad visited, Nana and Papa Ken. Their visit was very nice. Papa Ken fed Jacob mashed potatoes while I tended to Gavin and TD took Brie to eat lunch. Thank you for coming to visit us on Friday!
Jacob was moved to the regular recovery floor, which surprised me b/c his pain wasn't under control and he was still throwing up.
Jacob's dad showed up at 3:30 pm and stayed until 7 pm. During part of this time TD, Brie, Gavin and I went and checked into the Ronald McDonald and went to Target to get the things Jacob asked for to play with while he is in the hospital.
Jacob got a roommate that night and TD spent night with Jacob because Gavin was so grumpy.
Brie, Gavin and I stayed at The Ronald McDonald House. It was nice. I was even able to wash clothes!
Post-Op Day 2
It was a long night for TD. Evidently, Jacob's roommate's mom snored louder than TD, and between her snoring and the nurses checking on Jacob every few hours, TD got very little sleep. Jacob received his last dose of Morphine at 4 am because both of his IVs were "bad" and not working. Jacob's dad was supposed to come relieve TD (or me) at 4 am, but he didn't show up until 6:45 am, so TD just stayed until I got there at 8:30 am. Jacob did not want another IV put in, so he started receiving Oxycodone, Motrin and Tylenol orally.
When I got to hospital, I told Jacob that the doctors had told TD that he looked great and could get out of bed. We explained to him that getting out of bed would help the swelling in his face and head go down and hopefully make him feel better. Jacob got out of bed and used the bathroom. It was a slow process, but after the first few trips, it got easier.
Jacob's dad left at 10:00 am and didn't return because his wife had a fever. This was very upsetting to Jacob, but Saturday afternoon turned out to be a great day for recovery.
TD and I talked Jacob into taking a shower and TD did a great job washing Jacob's hair. It was really scary for both of them, but they got it done and Jacob said the shower felt sooooo good!
Jacob had a lot of wonderful visitors.
Part of our St. Pete family visited Jacob. Julie, Randy, BJ, Tim, Erin and Darbi drove up for the afternoon and evening. They brought candy and cookies, magazines and music, but most importantly, themselves. Julie, Randy and BJ were a huge help with Gavin, giving me a break. The girls played games and Tim and BJ took Brie to dinner so she could have nice outing. (Thanks for bringing TD and I back Outback too!)
Chason, Aunt Becky and Uncle Todd drove from Tallahassee to spend the day with Jacob too. Chason wrapped his arms around Jacob and walked him around the hospital floor. Jacob made room next to him in his bed for Chason to sit with him and Jacob listened to Chason tell stories. It was amazing to see Jacob smiling again and to watch the swelling go down on the left side of Jacob's face. He was even able to crack open his eye a bit and see again. The boys watched tv and talked about duck hunting and football.
It meant so much to Jacob (and to TD, Brie and myself) to have our family visit and be there for us during such a hard time in our lives. Thank you for helping Jacob feel better.
Saturday night was very calming for me. Jacob's roommate was discharged and TD, Brie, Gavin and me were all able to stay with Jacob in the hospital. The nurses still came in every two hours and the bed Gavin and I slept in wasn't very comfortable, but having all of my family together and safe gave me peace. I found myself able to breath again and I felt like the NF2 storm had passed for a bit.
Post-Op Day 3
Jacob's doctors came in early and said Jacob could be released. Being in the hospital gives you a sense of security and a feeling of safety. When you are there it feels like something could go wrong and help isn't far away. With that said, we were all very ready to go home....especially Gavin and TD.
TD left early to get all of our things from the RMH, do our daily chore, pay and check out. Brie and I cleaned up the hospital room and packed all of Jacob's things away. Mr. Dana and Mrs. Gina drove up from St. Pete to help us on our way. They brought our doggies and lunch! Thank you two for all of your help too. We couldnt have had our minds as focused as we were without you. You gave us peace of mind, which was a great gift.
Jacob was doing good for the most part. He was still very sore and swollen and achy from all of the activity the day before. His pain was mostly under control, but he was feeling very nauseous. As we were getting ready to go, Jacob became very sick and threw up a lot. I wondered how our ride home to Tallahassee would go....
Around 3:30 pm on Post Op day 3 we made our way home.
Jacob chose to ride with TD in little Sally Saturn. Jacob said he didn't want to ride 2 hours with the crazy dogs and crazy baby, lol. Jacob slept the whole way home and didn't get sick.
Once we got back to Tally I had a hard time getting Jacob's liquid perchocet filled. Our Walgreen's had to call 4 other Walgreen's and finally got it filled at the one on Tennessee Street West. Needless to say, it took another hour to get it home and to Jacob.Jacob got settled in, took his pain meds and decided he was "starving!" Per Jacob's request we ate Firehouse Subs for dinner. Jacob pounded a steak and cheese sub and went to bed. We put Gavin's baby monitor in Jacob's room with an intercom in my room and in the living room. TD got up and checked on Jacob every 2 hours and asked him if he was ready for pain meds. Jacob slept all night and didn't take any meds until 8 am Monday...
Post-Op Day 4
Brie went back to school and we rested. Jacob woke up and realized that he shouldve been taking his pain medication as prescribed. He was in a lot of pain. We got him his medicine over the next few hours and Jacob decided that he would take the meds like he was supposed to for at least another day. Jacob was still in pain, but the swelling in his upper part of his face was moving down around his cheek and jaw and even to the right side of his face. Jacob also became very moody.
Post-Op Day 5
Jacob took his last dose of of Oxycondone at 8:00 am. We continued giving Motrin and Tylenol for pain every 4 and 6 hours.
Maks came and visited Jacob for the afternoon and had dinner with us. Maks' family put together an awesome basket of toys, candy and cookies for Jacob. Maks and Jacob took apart and put back together all of Jacob's Flick Trix bicycles. Thank you, Bob and Martha, for lending us your son!
Post-Op Day 6
TD returned to work - Thank you, Becky, for being so supportive and understanding. We also want to thank Becky and Jim for helping make our lives a little easier. We really appreciate your effort, support and prayers. It means so much to our family to have great people surrounding us!
Gavin learned to wait today, he didn't wait very patiently, but he did have to wait. I tried to explained to him that his big brother was recovering from a really big surgery and needed Mommy more than him right now, but I don't think he understood. We made it through the day though, with only a few tears.
I was a little concerned that Jacob's emotions were so up and down - resembling a roller coaster.
Jacob was thrilled to have Lani and Neal visit him. They brought him the biggest chocolate milkshake I have ever seen. Jacob drank the whole thing.
Post-Op Day 7
TD was still getting up every few hours to check on Jacob and listening to the monitor all night. Jacob was still taking Motrin and Tylenol for his pain. We were still washing his hair for him every night, and keeping his head elevated. The swelling was completely gone with only a little bruising under his left eye. It was hard to tell he even had surgery.
Things were getting back to normal.
Jacob was still cranky, and now he was getting bored. I was wondering when this moody post- surgery child was going to morph back into my Jacob (or when I could send him back to school!).
Thursday evening, Mrs. Melanie from our church brought us dinner and brought Jacob an itunes gift card so Jacob could get some new music for his ipod. We haven't been to church since Gavin was born so Jacob and I were really happy to see her and to visit.
We had made it through the week and hopefully through the hardest part.
I am so proud of Jacob for being so strong. I am, as always, amazed and in awe with Jacob. I am so thankful for all the people who love Jacob and our family so dearly. I am thankful for the prayers and God's love that have covered us in this time of need. It is hard to find the words...
Jacob will return to school in a few weeks, go back to Shands to see the Neuro Ophthalmologist on October 2, and have his post-op appointment with Dr. Pincus on October 21.
I will do my best to find the time to keep you posted!!
Friday, September 11, 2009
The night before surgery TD and Brie joined us in Gainesville around 6:30 pm. We all went to eat at Cracker Barrel and had dessert at Ben and Jerry's Ice Cream per Jacob's request. We got back to the hotel and each started to prepare for the next day, the big day. Jacob's surgery was almost here.
Jacob was really nervous most of the evening and night. (We were all nervous) I washed his hair with the special shampoo we were given and we watched baseball as late as we could. Jacob cried because he was scared and I tried to comfort him with hugs, kisses and reassurance that everything would be fine. It seemed like Jacob got up 15 times during the night to use the restroom. He complained about stomach cramps and jitters in his tummy. Finally around 2:00 am Jacob fell asleep. Gavin slept most of the night in his pack n play, only waking up once - I felt like I didn't sleep at all.
TD, Jacob, Brie, Gavin and I got to the hospital at 9:00 am.
The rest of Jacob's family started getting to the hospital around 10:15 am.
Thank you to Granma Gina, Pops Dana, Heather, Josh and Presley for being there for us on surgery day.
Jacob's dad, his wife and GG and Papa Billy were also at the hospital for the day.
The "surgery phone line" informed us that we needed to be at the hospital at 9:00 am and that Jacob's surgery would be around an hour and a half later. I knew after meeting with Dr. Pincus the day before that Jacob was Dr. Pincus' 2nd case and he didn't expect to start with Jacob until around noon.
They called Jacob at 1:00 pm to go upstairs to be prepped for surgery.Jacob headed to pre-op. Jacob held my hand as we walked. I just kept thinking how brave Jacob is and how unfair this all seems. I prayed over and over in my head for God to be with Jacob and his surgeons. In pre-op we met several anesthesiologists and one of the nurses who would be in the room with Jacob during surgery. Jacob explained to the doctors that he wanted his IV placed first and did not want to be put to sleep with the anesthesia mask. He also requested that the instruments in the OR be covered up before he entered. He remembered seeing the tools last surgery and they frightened him. The anesthesia doctor who tried to place the IV the 1st time failed miserably. Jacob was mad and ready to go home. After the way he dug around in Jacob's arm...I would of been ready to go home too, but what's the big deal of getting an IV compared to a craniotomy? Another doctor came in and put Jacob's IV in very easily. Thank goodness. Jacob was given Verset and started to fall asleep. I told him how much I love him and walked away before he could see my melt down. Jacob went to the OR at 2:10 pm and I went to the chapel to pray.
At 4:30 pm the nurse called and spoke with Jacob's dad and said Jacob was doing very well. She said she would call again with another update around 6:30 pm. We didn't hear from the nurse again, but Dr. Pincus came down about 7:15 pm. He said Jacob did very well. He said the surgery went just as it was supposed to go. Dr. Pincus said the appearance of the optic nerve changed immediately after they did the decompression. The nerve went from "a very unhappy nerve to a happy nerve." Dr. Pincus said that him and Dr. Lewis were both very happy with the surgery. He said Jacob was being stitched up and that we wouldn't know about Jacob's vision until he woke up and went to PICU.
At 8:30 pm I finally was able to see my baby in PICU. He looked beautiful and precious. He was peacefully sleeping. Jacob's nurse was hooking up wires and attaching his monitors. I asked her if he had woken up or said anything since he was brought in from the OR. She said that Jacob's doctors had been there and talked to him - she said they had done a vision field test using their fingers......she said Jacob had passed the test. I looked at her and said, "So Jacob can see? He can see? He passed the vision test?" She said, "Yes!!" I can not describe the feelings of joy that came over me, the relief. Answered Prayers! Just to be able to kiss Jacob's hand and to see him breathing steady was priceless, much less to know he could/can see. That was a moment I will remember forever. TD and Brie came in to see Jacob with the same reaction. Tears of joy. Tears of relief. Tears of happiness.
Heather and Josh came in and saw Jacob briefly before they went back home to St. Pete. Jacob woke up for a few minutes to tell them goodbye and asked Heather how Presley, her 4 month old daughter was doing. Even after waking up from major surgery Jacob was thinking of others before himself.
Jacob's dad came in and saw him briefly.
I was able to bring Gavin in for about an hour before TD and Brie took him back to the hotel. It was so comforting to have all of my family together and to surround each other and Jacob with our combined love.
Surgery night was rough. Jacob was very sick to his stomach and in a lot of pain. Jacob had a hard time opening his eye so he was also scared. He dry heaved in the beginning which made his head hurt and his incision bleed. Later after drinking water he threw that up several times. I'm not sure if it was the Morphine or the anesthesia that made him sick, but the Zofran controlled his nausea later. Jacob slept a lot and when he was awake we listened to football on ESPN and talked about the games from that night. Most of the night and early morning I sat and held Jacob's hand because he was very scared. Around 5 am TD (thank you for being an awesome husband and step father!!!) came and sat with Jacob and I went to the hotel to be with Gavin and Brie and to sleep a bit.
Surgery day was over and Jacob was doing as best as could be expected.
Strong and Brave.
Wednesday, September 9, 2009
Monday evening I was worried we were going to have to reschedule Jacob's surgery.
When Jacob came home from his Dad's on Monday he told me he had come down with a headache and a fever of 100.2 late Sunday night. Jacob said he was feeling fine, but I was still worried. Monday afternoon I took his temperature again and it was 100.9 and he was coughing randomly. I started pushing Gatorade and water and giving him Robitussin expectorant. Monday night Jacob went to bed with only a 99.0 temp. Tuesday morning after craniosacral therapy for Jacob and a chiropractor appointment for me we headed to Dr. Julie Kelch's (our primary doctor) for Gavin's shots and a flu swab for Jacob. Gavin got his shots and Dr. Kelch looked over Jacob. Good news! Jacob was negative for flu, no fever and his chest sounded clear. We were on for our trip to Shands on Wednesday.
Wednesday morning (this morning) Thomas loaded the van for us, Jacob, Gavin and I dropped Brie off at school and got on the road for Gainesville. We got here early around 10:45 and stopped at Starbucks. After coffee, changing and feeding Gavin, and going potty Jacob and I had a nice conversation about how the rest of the day would go and who was going to visit him while we are here at Shands. I told him about all the wonderful calls and emails I have gotten and how many people were praying for him. We talked about the 10,000 angels watching over him and how Jesus and God are by our side.
At 11:45 we went to pre-op anesthesia / pre-surgery and saw the anesthesia doctor and did all of Jacob vitals. Once again - no fever and clear chest. Yea!
At 12:30 Jacob had his appointment with Dr. Pincus, the neurosurgeon. I filled out paper work and the nurse did Jacob's vitals. Again, Jacob sounded good. Gavin got changed and fed and was a happy boy, even though his 2nd bottom tooth is poking through. Around 1:00 Leigh Ann, the nurse practitioner came in and saw Jacob. She explained to Jacob how before and after surgery would go and gave us some shampoo for Jacob to wash his hair with tonight and tomorrow morning. Dr. Pincus came in next and went over the surgery with Jacob. We gave Jacob the choice to sit in or out while Dr. Pincus and I talked about Jacob's surgery and Jacob chose to leave the room. Dr. Pincus spent about 30 minutes answering my questions.
Explanation of surgery: ****************
Dr. Pincus will make an incision from the left ear to middle of the forehead, along the hair line. He will remove the skull (forehead area) above the left eye and the brain covering, then slightly retract the brain (very little) and work behind the left eye and optic nerve. Dr. Lewis will then come in and drill off (with a diamond drill bit - crazy right?) the part of the "bony tube" compressing the optic nerve. They will then look at the optic nerve tumor (meningioma) and see if it is in a place to biopsy. Dr. Pincus does not think they will be able to do this, but is keeping the possibility open. After all of this they will put everything back together and send Jacob to PICU for recovery. *****************
Next Jacob did blood work for blood typing - in case he needs a blood transfusion and then we went back to pre-op to see admissions.
At 3:30 we were done and eating at Subway.
I am thankful that we made it through this day. Step one is over.
We are ready for tomorrow, safely tucked into our hotel room, Jacob is healthy, Gavin is healthy and Thomas and Brie are on their way.
Oh, and the allergic reaction to the unknown bug bite all over my left arm and and under my eye is still out of control, but i think I will live :). It really stinks wearing long sleeves in September in Florida!
Friday, September 4, 2009
I'm not sure if I am ready to write this post. I know I wasn't ready for the weight of this decision.
Surgery: To do or not to do? The goal: To preserve the little bit of sight Jacob still has and do no harm. To prepare Jacob for radiation therapy.
I won't talk about the dangers. I won't discuss my fears. I am not thinking about them right now. I am forcing myself to think positively. I am trying very hard to see a positive outcome. I am trying very hard to keep faith in God and in Jacob's doctors, that the choice to do surgery will be the best for Jacob and his future.
Jacob, Jacob's dad, Thomas, Jacob's grandparents and my Rebecca all agree with me that this is the best next step to take.
My heart is still breaking for my beautiful, precious Jacob.
I spoke with Jacob's neurosurgeon, Dr. David Pincus this past Wednesday. The CT scan did show that Jacob's optic nerve does have a tumor on it. They are almost sure it is a meningioma. They even believe it has been there for a very long time, but is now big enough to cause problems. They also believe that the optic nerve has become "compressed" and needs more room. Jacob's doctors recommended that Jacob have Optic nerve decompression surgery.
According to Dr. Pincus there is a "bony tube" that surrounds the optic nerve and if they remove it the optic nerve will have more room to relax. He also believes it will give radiation more of a chance of working to Jacob's benefit. The surgery is performed by placing an incision along the hairline from the ear to the eye brow, going in through the skull and brain cover. They push the brain back "a bit" and work between the two frontal lobes. They then remove part of or all of the "bony tube" (I can't remember) and then put everything back together again.
I have a lot more questions and will get a lot more information when I meet with Dr. Pincus next week for pre-op. They did say that Jacob will remain in the hospital for 4 to 5 days and will be out of school for several weeks. We will be leaving for Gainesville Wednesday and hopefully return by Monday or Tuesday.
Once again I am asking for your prayers. Please pray for Jacob. Please pray to give Jacob's doctors steady hands and knowledge to take care of Jacob to the best of their abilities. Please pray for me to have strength, grace, patience, and most of all faith. Please pray for all of us. Jacob is very strong, but he will need each of us to help him through this difficult time.
Thank you and much love,
Friday, August 28, 2009
Both of them are now at Elizabeth Cobb Middle School. Brie is a 6th grader and Jacob moved up to 7th. On the 1st day Brie was really nervous, starting a new school and the Math and Science Magnet program. Jacob was glad not to be at the bottom of the food chain any longer.
The 1st day could of gone by without a hitch, but why would it? Jacob and I both ended up mad by 10:30 am. Jac got pulled from 1st period over a vaccination. This year it was required that all 7th graders have their Tdap vaccination (whooping cough, tetanus, and diphtheria). Jacob only had the tetanus part of the required shot because the whooping cough part of the vaccine is known to cause seizures. Since Jacob has a history of seizures and NF2 can be considered a seizure disorder our primary didn't want to give it to him. I discussed this with the nurse at Cobb this past May and was told everything was taken care of...so needless to say I was very upset that Jacob was pulled out of class, sent to the library like he had the plague, and I was called to "pick up my son." I spoke to the teachers in the media center, a person in the office and the nurse. By the time I got Gavin back out of bed and walked through the doors of Cobb, Jacob had been given his schedule and sent to class. I was assured everything was fine. It took me a while to cool down from that - like Jacob doesn't go through enough! Little things add up!
Anyway, after school on Monday I was so glad to hear they both like all of their teachers and seem happy with their classes.
It has been really nice to have them both at the same school only a mile down the road!! Gavin and I even walked to meet them when school was over Monday and Tuesday. A 2 mile walk in the afternoon feels great. Can't wait for the fall breeze.
Wish all I had to worry about was a vaccination and the weather. School has been really hard for Jacob adjusting to school with his vision loss.
I spoke with the vision teacher at Cobb on Tuesday and they are working on Jacob getting set up in the vision program. They were waiting on paper work from Shands. Being in the vision program will offer Jac large print books, talking books, and teach Braille. I will learn next week what other things they can offer to help Jacob. Like with his notes and worksheets and such. This week was hard for him regarding doing, reading, and writing his school work. The print in the books are too small, his worksheets print and numbers are too small and he has a hard time seeing the things he has written himself. TD reprinted a lot of Jacob's home work in font 28 to help him see it, so he could do some of it on his own. Brie, TD and I took turns reading him questions and helping him fill out papers. I guess we are going to have to go to key locks instead of combinations - those numbers are too small for him to see too. It's been rough for him.
I am waiting still on Division of Blind Services to finish his application and get him help through them.
Then there was Thursday...
It was another lovely day at Shands.
First let me say that I received an email from Dr. Amy Smith (a response from an email I sent her last Friday) really late last night. She stated in her email that her and Dr. Pincus are not convinced that what is showing up on or around the optic nerve is a tumor, based on the MRI from August 17th. Dr. Harbour is the one who stated it was a meningioma or a glioma. I sent the email to Dr. Smith asking why he didn't know for sure. Dr. Smith's email said she would like for Jacob to do a CT scan to get a better look at his optic nerve and the surrounding areas. It could be a tumor or another possibility is spinal fluid collection from something else. She wants to discuss Jacob having a spinal tap to check his spinal pressure. (I recently read about this on the NF2 Crew - elevated pressure in the spinal fluid can cause the optic nerve to swell causing problems with vision). I don't know how safe the spinal tap is with NF2- I haven't spoken to Dr. Smith yet.
So we got up and went on to Gainesville to met the radiation/radiotherapy doctor.
At 9:45 we met with Dr. Amdur at the Cancer Center and his 2 residents/fellows.
He said if it is a tumor then they can do radiation, but he isn't sure he would recommend it at this time. There are a lot of risks. (Better to wait)
He went over radiation options in the event that the CT does reveal a tumor.
The type of radiation they would do is photon RT. Shands Jacksonville (1 in 5 places in US) offers proton RT, which is the same radiation delivered by a different machine. Jacob could do either.
He discussed the risks.
- 50/50 that patients pituitary/hypothalamus get "screwed up" and will need some form of meds to help hormone imbalance.
- 1/4 that sight is improved at all
- 1/4 usually report no additional loss of sight
- 1/100 that patient will suffer memory issues (short term memory, thinking skills, etc)
- 1/1000 that radiation will cause complete blindness (Dr. Couldn't recall any)
- 1/100 that tumor will grow back years later or a new tumor will grow (cause new tumor growth)
- typical radiation treatments for this type is 2x a day for 5 weeks
Now we wait again for those findings.
On the bright side.....
I am very excited to say Jacob has been accepted into the NF2 study at NIH.
I received an email from the Neurosurgeon Dr. Asthagiri's Nurse Practitioner. She stated that they had received a letter from Dr. Amy Smith and Jacob's films and they were reviewed on August 20th. She said since that time, their offices had been moving and she has not had a chance to respond to me. However, she said Dr. Asthagiri is interested in seeing Jacob in the NF2 study. They are booking in Oct and Nov. They plan on Jacob getting an MRI scan, seeing the eye doctor and ENT doctor as well as doing audiology and vestibular testing, blood work and seeing the pediatric oncologist. She said the MRI scans are the hardest to book and depending on the availability it could take several weeks. She still needs to register Jacob so I hope to hear from her soon.
I am holding onto hope that this group of doctors at the NIH who take care of many NF2 patients will have more answers and be able to help Jacob.
So Jacob and Brie weren't the only ones who were busy this week. Gavin started eating cereal this past Sunday and he loves it!! By Wednesday night he was opening his mouth when he sees the spoon coming and he is learning to keep his hands out of the way. It is really cute and less messy than I remember, but I bet there is plenty of mess to come. Gavin also cut his 1st tooth. Ouch. This little bottom tooth is so sharp and is making him drool and chew on everything...like a little boxer. :) There are only a mouthful more to come. Bring em on - we're ready.
Glad it's Friday. We are ready for the weekend. Jacob and Brie are excited they are going to their favorite cousin's house and I am thrilled to have TD home with me a few days that don't include doctors appointments.
Our week of Brie's 1st day of middle school, Jacob's 1st day of 7th grade, Jacob's 1st trip to the radiation therapy doctor, G's first taste of cereal and G's 1st tooth is winding down.
Saturday, August 22, 2009
Where was our EASY button? Holy smokes something went the way it was supposed to go. We got there early and were taken right back. TD stayed in the back with Jacob for support. I was given the task of entertaining Maks and Brie, taking care of Gavin and walking Grissom and Connor (Maks and Brie were a big help). The scan only lasted 15 minutes longer than they said it would....45 mins instead of 30 and they got Jacob's IV in on the 1st try! Jacob said the contrast didn't hurt either. Which was really nice. For those of us who have had a CT before know how bad the contrast burns. Jacob said it was really hard to be still with his eyes closed for the scan, but the nurse said they got great pictures and that Jacob sat more still than most adults do. The only issue Jacob had was with the headphones. He said it was cool to have music to listen to, but they were too tight and started to hurt. They had to stop the scan for him to take them off. Jacob said the machine was really loud too. Not a big deal. With all this said it was definitely the easiest MRI Jacob has ever had...thank goodness. Jacob's dad and GG came too to support Jacob and be there for him also.
The MRI may have been easy, but the results have not been easy to swallow. The scan showed that Jacob does have a tumor/growth on his optic nerve in his left eye - his only eye. Dr. Robert Harbour called Friday morning and informed me that Jacob has either a meningioma or a glioma on his left optic nerve. It is more likely a meningioma, but he isn't sure. And why not I ask?? It was a rushed conversation and I was left, as always with more questions.
Meningiomas are common in NF2. Jacob has some in the brain already. This type of tumor is slow growing and usually are not malignant. Dr. Habrour said if it is a meningioma it has most likely been there since birth and just now gotten big enough to cause problems. We really didn't talk that much about what a glioma is, but it is the "worse" of the two types of tumors and grows very fast. He really feels like it is a meningioma.
Dr. Harbour recommended Jacob be seen by Radiation Therapy at the Cancer Center at UF Shands - a Dr. Robert Amdur. Jacob has an appointment this Thursday, August 27th. He isn't sure if radiation is an option, but surgery is not at this time. We will know more after Thursday.
Please, Please, Please keep Jacob in your prayers. Please pray for God to speak to me, to us and help us make the right decisions for Jacob's care. This is Jacob's only eye, his only way to see the world. We need to make the right choices for Jacob's future!
Wednesday, August 19, 2009
Friday morning we went to the Ft. Desoto Pier to meet Heather, Josh and Presley. Presley is such a sweet baby girl and cute as can be (8 days younger than Gavin)! TD was so happy to finally get to meet her. Grandma Poucher, Curt and Polk came to see us as well. It was kind of rainy. We went down to the water for a bit... TD taught Jacob how to throw his new cast net and Brie ran back and forth from the pier to the water feeding this old seagull/tern some baitfish the boys were trapping in their nets. She swore the bird couldn't fly. It was really cute. We all went back to the camper and Gavin and Presley got to play with each other. They stared at one another, blew bubbles, and cried together. Gavin got Presley going. She is so sweet - she never cries. Gavin was so cute sticking his tongue out at Presely.
Saturday morning the boys went fishing out in the boat with Nick and Josh.
TD, Maks, Jacob, Gavin and I went and had lunch at PJ's on St. Pete Beach. It was delicious as always. Grouper and Gator Bites!! TD and I went back to Julie's to clean the camper and the boys walked to the park to play wall ball. Later we went to the Vinoy Park. We had a nice walk and the boys threw their cast nets. I enjoyed wading out into the water. I learned how to throw the cast net. Jacob was a good teacher. I didn't get any fish though. Jacob and Maks caught several bait fish and a few purple and yellow stripped fish. Gavin sat on the park bench with Granma Gina and Daddy. That night we had a mini Thanksgiving for dinner. Gina cooked turkey, potatoes, green beans, sweet potatoes and rolls. My belly was in heaven. After dinner I visited with BJ and Tim and the boys swam with the girls. Needless to say I slept like a rock Sunday night!!