Feburary 9, 2011 Trip to Shands at UF

Trip to Shands Healthcare at the University of Florida


02-09-11

Waking up at 5:00 am is never pleasant for me. Especially after only sleeping two and a half hours due to a precious little one who hates to go to bed and a twenty year old cat who cries to come in and out of the house all night.

Jacob had a hard time waking up, as usual. He went to bed with another headache Tuesday night and woke up with it still this morning. He also woke up complaining of neck and arm pain and again had the shakes. I was thinking this was not a good way to start our morning. I get so worried every time Jacob says anything hurts or tells me he doesn't feel good. It is impossible for me to just think it's a typical headache, just a virus, muscle fatigue or something simple and normal. I am always on edge, waiting for new symptoms of one of Jacob's many tumors to show out.

We made it out of the house on time at 6:10 am. I forgot my sunglasses and I was dreading the sun rising and blinding me before we made it to I-75 South. To my surprise we were at the end of our drive on I-10 East when the sun started to come up reveling the most beautiful sunrise I have seen in years. The stunning shades of reds, pinks and yellows changed my mood and I felt like God was showing me a "light at the end of the tunnel," or the light of a new beginning. I felt like today was going to bring us hope. I had prayed for peace today for many different reasons and I felt like this was God's sign to me that he was going to carry me through the upcoming hours.

Without any doctors notes to look at, I will do my best to recall the things Jacob's doctors went over with us today.

Our first appointment was with David Pincus, MD, Jacob's neurosurgeon. We arrived on time for Jacob's appointment at 8:30 am. Jacob was happy to see his dad and stepmom, down from Georgia to support him for the day. The nurse called us right back and she weighed Jacob, measured his height and took his blood pressure. Jacob weighed 109 lbs and is now 5'7"!! Wow. Tall and Skinny! Dr. Pincus came in around 9:15 and he went over Jacob's recent scans from NIH with us and he discussed with us the areas of concern. I was relieved to hear that Dr. Pincus met with their head radiologist and they are not concerned about the “unknown” right frontal lobe tumor. Dr. Pincus even made the comment that out of all of Jacob's tumors and lesions, the one in the right frontal lobe remains the most stable. They are sticking to their past belief that it is a meningioangiomatosis. Dr. Pincus definitely does not believe it needs to be removed just because we aren't positive what type of tumor it is. The right side Vestibular Schwannoma (VS) was discussed. Since Jacob isn't having any hearing loss Dr. Pincus thinks it is best to wait to have it removed. He also said radio surgery (gamma knife) is an option to treat the right VS. Even though I have read about many other people with NF2 having their VSs treated with gamma knife, no one has ever recommended this for Jacob. I will have to read and research this new idea.

In 2009 we took Jacob to explore the benefits & risks of radiation and radio surgery for his left optic nerve meningioma. We decided at the time radiation was not the best option for that situation. Radiation is scary.

We talked about the VSs or the VSs surgical removal causing damage on Jacob's facial nerves, but right now we are most worried about preserving Jacob's hearing and will worry about the facial nerve being damaged later.

Dr. Pincus explained how the two eppys could be removed at C-2 and the brainstem base. He still believes that it is best to watch Jacob for pain or other signs that those tumors are causing problems before going into surgery. Lastly we talked about the C-7 tumor that is compressing the spinal cord. Dr. Pincus did an exam and did find some mild reflex abnormalities, which could suggest spinal compression, but isn't enough reason to do surgery and it isn't positive which tumor could be causing it. The rest of Jacob's exam was normal. His walk and balance were both normal also. Dr. Pincus will look at Jacob's scans as he has them, but he wants to see Jacob back in his clinic in six months to re-evaluate him physically. Dr. Pincus and Leigh Ann, his nurse practitioner, are always a pleasure to see and to talk to, and they explain things well in "English."

Jacob's next appointment was with Amy Smith, MD, Jacob's Pediatric Oncologist. Oncology is always very busy, maxed out with kids and their families. It is very sad if you think about it. We waited for several hours, but Dr. Smith is always worth the wait. It was nice to see Mrs. Hillary, Dr. Smith’s nurse practitioner, and chat with her for a bit. After being greeted with a much needed hug, Dr. Smith asked Jacob how he was feeling, how his hearing is and the typical questions Jacob has grown accustomed to. We talked about Jacob's headaches and tremors. We are wondering if Jacob's blood sugar is getting low. She suggested we try an afternoon snack and she told Jacob that his oreos weren't going to cut it. Dried fruits and nuts, whole-grain crackers, bread with peanut butter, yogurt and fruit are all good foods to help increase blood sugar. We will start paying better attention to this for Jacob and encourage him to remember to eat before he starts to feel bad. If eating more frequently doesn't help, we will let Dr. Smith know and we will try to see what else could be going on. Finally we talked about drug therapies. Dr. Smith thinks that Avastin could help stop the growth of Jacob's tumors and possibly shrink them some. She also said she may prescribe Rapamycin with the Avastin later after she does more research to see how it will do with Jacob's seizure medication. Rapamycin is now being used to treat some patients with Tubersous Sclerosis, which is what Jacob was first diagnosed with in 2000. Dr. Smith talked to Jacob about having a port placed, how the surgery is done and how the chemo is administered after the port heals. Jacob was happy to hear he would still be able to play basketball with the port in his chest. No crazy rough-housing allowed though. So now we wait to have the treatment approved by our insurance and the outpatient surgery to be scheduled for the port. After two weeks of healing Jacob will be able to receive his first infusion of Avastin. It takes about an hour and a half to receive and has to be done at Shands every other week. We talked about side effects and she said the tumors will be monitored by MRI. Jacob will also have blood drawn at each infusion appointment to have his white blood count checks and they will do a UA to check for protein in his urine. It is an extremely odd and almost guilty feeling to be excited that your child is going to receive chemo, but in Jacob's lifetime we have never been given anything to fight against his NF2 other than terrifying surgeries. I feel like we are going to do something and not just sit on our hands waiting for his NF2 to get worse. I pray that this drug therapy will buy Jacob more time with his hearing in both ears and spare him from having to have any surgeries this year. Avastin isn't a cure, but we are hoping it will be a huge bandaid that will help for a long time. Deep breath, exhale. Jacob was excited for lunch and really happy he didn't have to have a complete physical at this appointment, lol!

Our last appointment was with Pediatric Neurology. I won't go into great detail about this appointment because it was with a new doctor and we mostly went over Jacob's medical history. I really like the new neurologist, Dr. Edgard Andrade. He was very attentive and spent a lot of time with us. The main reason we were there was to have an EEG scheduled to see if Jacob could possibly be having some seizure activity. Dr. Andrade talked about the different types of EEGs and said we will start with the 45 minute one with Jacob. We are going to try and schedule that the day we take Jacob to have the port placed. We talked about increasing Jacob's seizure medicine and what the average dose was for a person his size. Jacob's dose is very, very low.

That appointment was over around 3:15 pm and finally we could go home. Jacob was dying for Dairy Queen. I googled their locations and we hit one on the way out of Gainesville. Jacob said it was the best chocolate milkshake he had ever had. It rained on our way home, but Jacob and I had a nice drive and talked and laughed and everything felt normal for a few hours.We drove straight to pick up Brie from art class and headed home. I was thrilled to be home, see my beautiful Brie, my little G-man and get a big, much needed hug from my darling Thomas. Thank you Babe for taking such good care of G while we were gone today. I didn't worry once about him and today was the longest time I have been away from him in his life. (Other than the 2 times I was in the hospital, but those days don't count.) I am so thankful for our family and my friends. I would never get through any of this without your prayers and support. Keep them coming!

I love you all so very much.