I guess now is as good of a time as any to write a new post. One of my friends this morning said, "I haven't read an update in a while. Is everything ok?" Thanks for the motivation, Leah!
I know, I know, I'm very far behind. Thanksgiving week was so busy, as I’m sure it was for everyone. It flew by and we’ve been trying to catch up since... It's just life, right? Makes me think of one of my daily devotions recently, “Are you living or only existing?” I wondered where the "I'm surviving!" option was!
Our trip to Orlando, well, I can't say it went well, but I can't say it was bad either. We made it there and home safely, so that counts for something.
Jacob got his braces off early Monday morning. This has become a chore for all of us, every two to three months, but I’m determined that he is going to have straight, beautiful teeth one day. After driving back home to get Gavin's favorite blanket, we were headed to central Florida. I had packed our lunches and thought a lot about where we would have a picnic. I knew I didn't want to stop in the swamp. The rest area after Gainesville has posted signs that say “Beware of Poisonous Snakes,” a good deterrent for me, so we stopped right before G-ville. The green grass and clean picnic tables were not worth the flies we encountered, but we survived. It was very comical to watch Gavin swat at and become very frustrated with the persistent flies who wanted to sit on his shoes. G ran in the grass, we ate, used the restroom twice and were on our way.
We got to O-town around 3:30 and checked into a beautiful room on the third floor of the Ronald McDonald House. It was an antique car-themed room, fully equipped with photos of classic cars and an impressive car door sculpture on the main wall. I really loved this room. Gavin did ask where the bug room was and I had a hard time explaining how each room is different and sponsored by a different group of people. I’m sure I lost him after my first few words. Gavin's favorite thing in this room were the rims on the wall, and that he could stand on the stool next to his big brother and spin. Jacob's MRI was at 5:00 pm. I called Hillary, Jacob's oncology ARNP and asked if we could come to their clinic to have Jacob's port accessed and have his labs drawn that day. I’ve learned that any pediatric clinic does a much better job with port access and IVs than any radiology department. In the clinic that afternoon we met a very nice and efficient nurse. Jacob enjoyed talking to her about hunting during our brief visit. Evidently, her husband hunts in "our neck of the woods." She had Jacob in and out and on our way to MRI, after stopping in admissions first, of course. I had no expectations for Arnold Palmer Children's Hospital Radiology department. This was our first visit and, since we’ve had so many different trials with radiology, I tried not to have any high hopes. We were in MRI forever, but the waiting room was kid-friendly (cartoons on a big screen and a unique video game the kids have never played). I talked with another mom there with her son (also living with a rare disease), and the staff was very nice. I like to be updated as to why I am waiting so long for my child to be seen and they updated us several times about the emergency room bringing in a few children who needed immediate imaging. I don't mind waiting when this is the case.
Jacob was done around 8:00 pm. Gavin and I were tired and grumpy. We had colored, walked, visited the gift shop, played in the castle, watched cartoons, done stickers and raced his hot wheels for hours. When Jacob came out, Gavin and I must of looked like we had been there for days. Jacob was happy though. He said it was the best MRI ever. During his this MRI he was able to watch a movie, (the tech had asked me before they took Jacob back if he could watch PG13 movies) and Jacob chose Transformers. Through a mirrors and head phones set-up (sounded kinda rigged, but good for them!) kids can watch a movie while getting their pictures done. How cool is that?! I thought it was clever and was thrilled that one of my boys were happy. Gavin had been really well behaved, considering, but we all have our breaking points, don't we?
It was well past dinner and the cafeteria hamburgers we had eaten at 4:30 had long passed through our tummies. We left the campus in search of dinner. I was excited to see Jimmy Johns and since they are lightening fast, I ordered my typical Bootlegger Unwiched sammy to go and took it into Jacob's dinner choice, McDonald's. Dinner was very unpleasant thanks to Gavin being so tired. An unhappy two year old makes for, well, not a relaxing dinner. And the fact that it was McDonalds probably didn’t help much either. Baths and sleep were much needed for all of us. The RMH was very quiet when we returned. Jacob played with Gavin in the playroom for a few minutes while I made the extra bed for Gavin and then Gavin and I retired to automobileville. Jacob hung out for a bit in the common area, talked on the phone and tried to find a tv that was working.
I slept like a rock that night and was back up at 6:00 am the next morning. When you stay at the Ronald McDonald House, you are responsible for stripping your beds and cleaning your room before you leave. Cleaning, packing us all up, encouraging Jacob to get ready and forcing Gavin to can be challenging some times, but it wasn't too bad that morning. I forgot to tell the night manager we were checking out before 9:00 am so I had to hide our keys and leave a note for them to call me about my donation. I found a very good hiding place and we walked back over to the hospital to drop off all of our stuff in the van and head to clinic. We were not seen until 9:45 am, our appointment was at 8:00 am. The nurse told us that Dr. Smith was in a meeting that ran over so we knew upon arrival she was going to be late. I was a bit flustered by the time she did come and I asked if Child Life would come and play with Gavin, but they came late too. I wondered if it is simply taking your child to see the oncologist or if it is having to wait so long that sends my nerves into a frenzy. I may not ever know. The first thing Hillary asked me for was Dr. Asthagiri's notes from Jacob's visit at NIH in August. Since they didn't tell me before hand and have never asked for them before I didn't have them. Strike one for us. Next they told me they needed more of Jacob's MRI's, previous to 2010. I didn't have those either. Strike two. Dr. Smith came in and proceeded to ask Jacob multiple questions about his vision and how he had been doing recently. She asked how Jacob's appointment with Dr. Samy, Jacob's neuro-ophthalmologist, had gone in August and asked me if I had those records. Nope, strike three. I told her over all his vision has remained the same over the last year, but Dr. Samy's notes had reported some concerns. Jacob's Goldman's Visual Field showed enlarged blind spots compared to last year, but Dr. Samy said it could be due to performance fluctuation. He also noted that Jacob's OCT (Optical Coherence Tomography) showed global thinning of his nerve fibers. The OTC is a test that is used to evaluate the performance of the optic nerve. None of this really bothered me until Dr. Smith said she was asking about Jacob's vision because the radiologist reading Jacob's MRI from the night before was concerned that there had been changes in the left optic nerve (Jacob's only eye and vision) over the last year. Without more information there wasn't really more she could explain to us. One comment that stands out in my head, that worried me was when I was telling her that we discussed doing stereotactic radiotherapy on the optic nerve meningioma (tumor) in Pittsburgh with Dr. Samy as an option to treat the optic nerve meningioma, she said looking at Jacob's scans it doesn't look like there is much of a nerve to do radiation on. At this point, I’m telling myself that I’m going to trust in Jacob and the fact that he hasn't had any behavioral changes with his vision. I am praying this new radiologist is just arriving at the party and may not know what he is talking about. Won't be the first time this has happened.
Since coming home I have mailed Dr. Smith Dr. Asthagiri's notes from August and Jacob's older MRIs. I also sent Dr. Asthagiri the images from Jacob's MRI at Arnold Palmer for him to review and see if he has any concerns about Jacob's optic nerve. While we were in clinic Hillary called Shands to get the notes from Jacob's appointment with Dr. Samy's, but I mailed a copy of what I had to her as well. I haven't heard back from them yet.
The rest of Jacob's MRI showed no changes, which is great news since he was having rapid growth before, but it still wasn’t the result I have prayed for. Even with this bit of disappointment, I’m extremely thankful for another year without a surgery for my baby. And now for strike four… (yes, I know, I just lost the slightly entertaining baseball analogy I was going with… sigh.) Jacob's labs from the day before showed his kidney was spilling too much protein and he wasn't able to have an infusion until those levels stabilized. We talked about Jacob's upcoming surgery and the fact that he had to take at least four weeks off from the Avastin before surgery. We discussed the slight growth in Jacob's left VS and C-7 schwanomma shown on the MRI at NIH in August. Dr. Smith thought it was best to stop the Avastin and try something different after Jacob's surgery. We talked about Rapamycin again and RAD001. The RAD001 isn't available off script (unless you have Tuberous Sclerosis) and if Jacob even qualified for the trial at NYU we don't have the resources to travel there for treatment. With Rapamycin they monitor blood pressure, cholesterol and triglycerins. So we will revisit Dr. Smith at the beginning of March and will go from there. In the mean time Dr. Smith is going to research more the possible drug therapies for Jacob and talk to Dr. Asthagiri and Dr. Warren at NIH. Dr. Warren is Jacob's pediatric oncologist at NIH. After getting all the heavy stuff out of the way, a typical exam was done on Jacob and a few of his new surface fibromas were discussed. He has one on the top of his foot that is bothering him in tennis shoes and a toe tumor I was worried about. Child Life brought Gavin back in, Jacob went over to the infusion room and had his port access removed and we were headed home by 11:00 am.
Driving home I fought many sad feelings. My hope has been stepped on and I feel disappointed. I had prayed that Jacob would have some shrinkage in his tumors like so many other NF2 patients have had. Even though he isn't the first to not have any response, it isn't how I wanted it to play out. I asked Jacob how he was feeling and he said, as always, that he's fine. He said he's ready to try the next thing. Now my prayer is he will have enough time before any of his tumors start to cause more problems to get the chance to try something new. I am thankful Jacob was able to try Avastin.
Jacob, Gavin and I are leaving January 22 for NIH. Jacob will have all his tests done and see his doctors the first week we are there. On January 29th, he will be admitted to the hospital for surgery on the 30th to remove the 6 cm abdominal tumor that we pray isn't attached to his right adrenal gland.
Jacob will have his protein levels checked next week and will need to have his port flushed once a month. I have those orders in hand and have checked that off my to do list.
Jacob is enjoying Leon and being in high school (maybe a little too much, according to the parent-teacher conference on Tuesday) but I'm glad he is fitting in. He has been working with a student math tutor that he really likes and he's been bonding with Nana over Language Arts.
Jacob hasn't complained any more about his balance. I took him to see Dr. Maitland, a neurologist here in Tallahassee, to have his balance evaluated. He was referred for a balance test and then to a physical therapist for a improvement plan. Jacob went to three sessions. Dr. Hunter, his PT, gave him exercises to do at home in between his visits (3 weeks apart, for only 30 mins) but Jacob feels like he is too busy to do them. I decided that I would take Jacob back to PT when he is ready to put some effort into it and feels like it is important. He's still going to OT weekly for his right hand and his new resting splint seems to be doing a good job keeping his fingers stretched out.
After four appointments with the occultist (he only comes to Tallahassee once a month) Jacob's new right eye prosthetic is just right and looks fantastic. Jacob is super handsome in his new glasses as well :)
Jacob's been hunting a few times, took an awesome trip to Destin with Chason and company for a Ducks Unlimited event, and has been working at his Boy Scout Troop's Christmas Tree lot. He helped TD hang our outside Christmas lights and kept me company while I put up HIS Christmas village. He continues to laugh and fight with Brie and Gavin daily and do the best he can to get away with not taking out the trash.
In the big scheme of things and considering NF2 Jacob is doing great!!
And life goes on and we survive another day, week, month and year! I can't believe it's almost 2012!
By the way... I’ve been passed along a few comments wondering why I write about all the little things, why I ramble on and not just report Jacob's medical information. Our days are so much more than that to me and I have a desire to draw the entire colorful picture and not just the black and white. I want to share the details and a little bit of myself in each of my entries. I want to write about our journey, and all the little things, like having a picnic, matter to me. I'm sorry for those of you who would prefer I just get to the point. If you know me well enough you know that getting to the point is a job all in itself for me. I am giving the best I have to offer.