Jacob's Medical latest August 2011

Jacob has had a lot going on over the past few months and is so fortunate to have had so many great summer experiences. He attended his first session at Camp Boggy Creek (which he loved!), spent a week in St. Pete with family, had VIP passes at a Rays game and met Joe Maddon (Thank you, Ashley!). Jacob celebrated his 15th birthday and he and I went to Washington Nationals game in Washington, DC and met John Lannan. Being at summer's end I can honestly say that I think Jacob had a great summer, but he also had a lot of medical appointments that always seem to creep in and dull the excitement.


Since I last updated, Jacob has had two more Avastin treatments and most likely his last one at Shands. The one in the first week of August was supposed to be Jacob's last infusion before having surgery in September on his right adrenal gland. We have since postponed the surgery. Jacob and I traveled to the National Institute of Health in Bethesda, MD for his biannual MRI, oncology and neurosurgeon appointments. As I mentioned before in an earlier post, Jacob's neurosurgeon, Dr. Asthagari, had reviewed Jacob's CT of his abdomen from Shands and shared it with their radiologist and also with Dr. Electron Kebebew, who is the Head of Endocrine Oncology Section, Surgery Branch at NIH, and that they did not agree with Shands' findings that the abdominal tumor is attached or is part of the adrenal gland. Dr. A set up a consult for us with Dr. Kebebew, and in retrospect, I'm so glad he did. I was extremely impressed with Dr. Kebebew and his confidence to treat Jacob. He insisted on showing us Jacob's CT scan and took a lot of time pointing out to us that the tumor is in fact not attached to Jacob's adrenal gland. He also went into great detail about the organs, nerves and veins in that area. I found myself very comfortable taking with him and knew at that time there was no way anyone else would be as qualified to do Jacob's surgery. I would like to think that our pediatric general surgeon at Shands would’ve gone in to do Jacob's surgery and left his adrenal gland in place when he realized that the tumor is not attached, but I don't think I can take that chance. Not to mention Dr. Kebebew is very familiar with NF2, has done surgery with NF2 patients before and having the tumor removed at NIH will help the NF2 study. It is an added plus that if there are any issues with Jacob's spine at the time of surgery, Dr. A will be there to assist. Dr. Kebebew said that they will do another CT scan the day before surgery, enhancing some of the veins in that area and to get a better look at the organs around the tumor. His approach is the same as the doctor's at Shands. He will first attempt to preform the surgery laparscopicly and if he can't, he would then move on to open surgery. Both him and Dr. A agree that because the tumor is slow-growing, it is safe for Jacob to wait a few months and even until his next visit to NIH in January to have it removed. So we have a new plan.

Jacob's MRI results from NIH were stressful as usual. Dr. A wanted to concentrate on a schwannoma (tumor) that is at C-7, stretching down to T-1, that has Jacob's spinal cord very displaced. They have been watching it for a year. It is still slowly growing. Dr. A talked very seriously with Jacob about what to watch for and how imperative it is for him to pay attention to his left hand's fingers. Dr. A went through the areas of the left arm that Jacob could feel differently in, noting that he needs to watch his legs and ability to walk. Dr. A said the loss of use, pain or tingling could happen abruptly or gradually in his left hand or legs. He stressed many times to Jacob how important it is to tell me if he has anything different going on with those areas. We do not want to jump into surgery to remove this tumor because there is a very high chance that to save Jacob's legs, the surgery will cause some loss of use in his left hand... his only fully working hand. So we will wait, watch and pray!

Next Dr. A talked to us about Jacob's vestibular schwannomas. He said the right side, the bigger of the two, which is about 3 cm and pressing slightly on the brain stem, appears unchanged since January, but the left, the smaller of the two, measuring around 2 cm appears to have grown "a hair" (he explained how he sees these slight changes). We talked about our high hopes for the Avastin and how it appears Jacob isn't having the shrinking response that some people with NF2 have experienced. To be blunt, it appears to not be working yet for Jaocb. A lot of NF2 patients regain some hearing with the drug (they have no idea why) and do not experience the shrinking, though since Jacob has very little hearing loss, we can't use that as an indication that the drug is working either. Dr. A said that he was okay with whichever way we wanted to go, continue with the Avastin to give it more time to work or stop and say that we tried. With that said, he also wanted to point out that if Jacob has any problems caused from this C-7 tumor he will have to wait a month to have it removed being on the Avastin. We decided to take our chances and put Jacob back on the Avastin and are in the proccess of getting our appointment worked out to go to Arnold Palmer Children's Hospital in Orlando next week. According to the results of Jacob's heal-to-toe tests, he’s starting to suffer from balance loss. He could not do the test without almost falling. This is different from January and is a direct result of the VSs. Dr. A said Jacob's other tumors are mostly stable and not worth talking about at this time. He suggested a sleeping splint for Jacob's right hand to help prevent more of a hook appearance and future muscle tightening. I talked with Jacob's awesome OT and they measured him Monday and are working on getting it. All done, NIH!

Jacob also had an eye appointment within the last few weeks with Dr. Samy, the neuro-opthamologist at Shands. He said the optic nerve appears a little fatter, but looks stable. They took photos but couldn't compare them because the last photos were taken on a different machine and they didn't have the read out… or something like that. Jacob's Goldman's Visual Fielding testing was a little different than last time, his blind spot seemed a bit bigger, but Dr. Samy said it could be due to performance and not actual increase. We talked about future treatment for the optic nerve meningioma at the University of Pittsburg using stereotactic radiotherapy (I pray this will never come, or will at least be a LOOOONNNGG time from now). Dr. Samy wants to see Jacob back in six months. I told him how upset I was with our appointments considering the many times we were bumped and moved and he explained to me that they have had some office staff changes recently and gave me a number to call if it happens again. We also talked about the ridiculous 6 hour appointment we had just sat through and he really said that was out of his control. Ho hum. I forgot Jacob's new prescription (but they are mailing it) and we left exhausted at almost 7:00 pm with still two hours to drive home. Jacob will go back to see them in February and will see the eye clinic at NIH in January.

I think that covers it....

 
 
As TD would say, "My eyes are burning." I'm tired! Getting up at 6:00 am is for morning people and the birds, both of which I’m obviously not! All three of my amazing children started school this week. All at different times, all at different places. This is going to take some getting used to!


Jacob's day starts at 6:15. He has to be on campus by 7:25 and it takes him longer than most women to get himself together in the morning! He was nervous about starting Leon High School, with a head count of around 1,000 kids and three stories of classrooms. Jacob's first day went fairly well, so he said. He was embarrased that he went into the wrong class during the wrong period and didn't know it until his name wasn't called on the roll. We told him he wasn't the only freshman (Oh my gosh, I have a high school freshman! Man, I'm getting old!) who did that yesterday, but I don’t know that our encouraging words helped any! Leon is the oldest accredited high school in the state of Florida and I have been told it is an awesome place to attend and learn. I guess we’ll get to form our own opinion over the next few years. When I picked Jacob up today at 2:00 he was in much better spirits and seemed to be in a good mood. He only complained about the heat today, saying he was, "just hot!"

 



Brie gets to sleep in until 8:00 am on Mondays, Wednesdays and Fridays (on Tuesdays and Thursdays she has to get up a little earlier so Gavin can get to school by 9:00) and she is very happy to be at the very top of the food chain at Elizabeth Cobb Middle School. She is officially a superior 8th grader. She came home yesterday very pleased with her schedule, except for getting PE again when she thought she would be taking Art. I spoke with the assistant principle this morning and got that changed. I haven't had a chance to talk to her yet, but I hope she likes her new art class. I am expecting great things from Brie this year. Her teachers are too! She was placed in three high school credit classes, Algebra I, Physical Science, and Spanish II. Say a prayer for my baby girl!! Looking at her first day of school pictures, she isn't much of a baby anymore… Deep breath, exhale! I know she can do it... especially if she learns to put even half of the effort towards school that she puts in to her social life! I will be off to pick her up soon - she gets out at 3:50.



1st Day of Pre School!!!

And our littlest one was a BIG boy today and went to his first Preschool class! I am very proud to announce that neither Gavin nor I cried (don’t be fooled, tears were definitely on the radar, but I held them back)! His teacher gave him a bucket of cars as soon as we walked in and he was very happy. I guess Gavin and I spilled all our tears at MOPS/Moppets last year. TD and I went to orientation and hoped for the best, opting not to stop by a final time before leaving Killearn campus. When I went to pick him up at noon I was so excited to see him. I was thrilled that he was excited to see me too! As soon as he saw me he gave me a huge hug and said, "I worried about you Mommy!" My heart melted. He laid his head on my shoulder and didn't let go. It was a "sweetest" moment for me. For those of you who have spent a decent amount of time with Gavin, you know that he’s funny about his clothes. G wakes up and gets dressed, changes his clothes after playtime, then again after lunch (before nap) and then gets new shorts after nap. And that’s just on a “normal” day! He likes to change his clothes if they get dirty, or wet, or paint on them, or dust, or if they’re the wrong color for the moment, etc. He also likes to pick out several different pairs of "underwears" throughout the day. And anytime I open any of Gavin's drawers, like to put clothes away or to just get shorts, he has to change all of his clothes. Honestly, sometimes he’ll just stay in his undies most of the afternoon and into the night until he changes into pajamas before bed so I dont have to wash an entire load of his clothes on a daily basis! It can be a bit exhausting at times, but today I found it incredibly hilarious! After my hug, Gavin's teacher said he had a great day and that I over-packed his snacks. She tells me what I should pack going forward and I go on to ask her why Gavin has on his extra pair of clothes. I was wondering if G had an accident, but he rarely has potty accidents, so I was very curious as to what could have happened. Gavin's teacher tells me that after playground time, G came into the classroom a bit sweaty, proceeded to strip down to his underwear and wanted to stay that way the rest of the morning! Ha! I can just see him reasoning with her! She convinced him to put on dry, clean clothes and they talked about having to wear clothes at school!! He's too funny. I'm glad I have a funny story to share with him about his first day of preschool when he gets older. I asked him if he wanted to go back on Thursday and he said yes. He said he had fun and he liked it. My big two year old! 

So we are all adjusting and looking forward to a great school year. I'm a lucky mommy with three awesome kids (and an amazing hubby too. TD, Thanks for going with us this morning!)!

 

(I promise to write an update about NIH soon, but this is what I wanted to write about today :) )

NIH Trip Aug 16-18, 2011 (I)

Wednesday, August 17, 2011 (Tammy’s version)

Jacob and I had extremely uneventful flights from Tallahassee to Ronald Reagan airport yesterday. No hassles with security and no wait times. We were at the Children's Inn in Bethesda, MD by 11:30 am. I guess this is the one advantage to starting your day at 4:00 am! Upon arrival, I was informed that the Inn was full and our room wasn't ready, so we went over to the Clinical Center to see if Jacob could be seen by oncology early. To my surprise, Jacob's oncologist here at NIH, Dr. Kathy Warren, was on vacation, but the RN (I can't remember her name, but she is awesome!) called the oncologist who is filling in for her, a fellow, Dr. Cooper, and she came right over to see Jacob. I gave her all of my copies of Jacob's Avastin mapping, MRI reports and labs. She did an intake and examined Jacob.

We were done with Jacob's appointment, had a crappy lunch in the cafeteria and were back at the Inn by 1:30 pm! I believe this should be included in the record books, and I will have to remember this the next time we spend 6 hours in the waiting room! I was dying for a nap, but our room still wasn't ready. Jacob played Xbox and I watched the news. Sitting across from the playroom broke my heart and made me miss Gavin even more than I already did. I did eventually get my nap in, which was nice! Later that evening, the Inn had volunteers come in and provide a really fantastic dinner. One of the chefs was supposedly from the Food Network. Normally, I don’t get excited over food like Jacob, but I was thrilled about dinner because we didn't get to go to the grocery store until 6:30 and I was starving!

After shopping, I had the pleasure of meeting and mom and her son from the Detroit, MI area, both of whom have NF2. We had a very nice conversation. Her son is very different than Jacob. And by different I mean complete opposites of the spectrum. He plays the clarinet, the violin, does theater and sings opera. Needless to say, he and Jacob didn't have much to talk about (an understatement, obviously, could you imagine Jacob trying to talk about theater?!), but it was nice for them to have met nonetheless. Jacob was mad at me at 11:45 when I enforced the first lights-out-before-midnight of the summer, but he survived and we started day two at 7:00 am this morning. Jacob went to the Peds clinic, back to the wonderful RN, and had his port accessed and labs drawn. They took at least 8 viles, but she showed Jacob how much (in CCs) it was and it was less than an ounce. We went to MRI to see if they could see Jacob early, but that was a no go. We tried to go to the Floor Five Clinic and see the new Endocrinologist doctor, but I guess he has been specifically asked by Dr. Asthagiri to come see Jacob this afternoon (a special trip he does not normally make) and won't be in until our appointment time at 1:30. Jacob is having his MRI now and we will have his port flushed and de-accessed, inhale some food and go to clinic. I will update later about that appointment.

[UPDATE: This appointment has been moved to 9:00am on Thursday so as not to interfere with the Washington Nationals game tonight!]

Thomas said he is working on a blog post as well, so who knows what the end result will be - LOL.

TD - I miss you guys so much. It seems so silly with it only being a day and a half, but my heart really hurts. Jacob and I watched our videos this morning with G the other day. So sweet. I love you. I still want to talk to B when she has time :)