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....