Wednesday, November 6, 2013
Jacob is amazing and recovering so well. He looks and feels good. We've gone for walks, he's played video games with the boys, he's enjoyed visitors and he's up and awake for all of the day. Today TD took some time off work to be with Jacob and they went on a short walk around Tom Brown pond and Jacob went with me to pick up Gavin from KKP. Our weather has been beautiful!
Jacob is still adjusting to the numbness in his right cheek, talking, drinking and eating. He is working on that with daily exercises. Yes! You can exercise your face :) His balance is improving and the drops are helping with the dry eye. If you don't blink your eye dries out. Never thought of that. Friday will be another milestone. Jacob's stitches and staples will come out. I will be taking Jacob to Dr. Rosenberg's office at Southeastern Plastic Surgery to have the stitches from his head and back removed and the staples from his abdomen taken out. Jacob says he's ready.
Once again I can't express enough how thankful I am for everyone's support and prayers. I am in awe of the out pour of help we received. God is good and we are so loved and GRATEFUL!!!
Sunday, November 3, 2013
Thursday, October 31, 2013
Jacob has had a great day!
Most of you have seen his video and can see he's got some good movement on the right side of his face.
Today he took two walks down the hall with a walker. The second stroll was tripple as far as the first. He does stop and close his eyes randomly to control the dizziness. Jacob had his lunch sitting up in a chair and is eating well. We've been released from PICU but since the Peds floor is full we are staying put. It's not a bad deal. We are in a private room with a beautiful view and on the floor schedule. That means no more neuro checks every hour and he's off the monitors. He's down to one IV and it's his port access. Wound care doctors came and looked at his bum. The spot of pain is a bruise. It responded well to pressure, turning white under the red means the cells under the skin are alive and a blister should not form. Dr. said it should feel better soon. Jacob continues to have 15 ccs of spinal fluid drained every 2 hours. He went most of the day pain free but has a bad headache now and is going to bed. He's been switched to oral pain meds. The dressing on his abdomen incision was changed and they kept the drain in. Jacob's been on the phone and in good spirits. Dr. A was happy with his progress. Oh & I love our nurse, lol. Sorry for the complaining this morning!
I had a nice quick lunch with lovely woman named Mary today from the UMC here and now Im hoping to get a nap.
Happy Halloween everyone!! I hope you have a lot of fun tonight.
Hi, my name is grumpy!
Jacob's RN for the last 12 hours has been great to Jacob, but I'm ready for the nursing rotation this morning. It can't happen fast enough. I'm a fully aware that I am a pain in the butt, demanding you get it right parent and that you don't over baby and over medicate. I understand its annoying to constantly have to answer questions, but get over it. The lack of respect can be beyond frustrating to me. Don't insult me. I may not be on staff, but I know my son and I will not be ignored. Yes, lack of sleep intensifies these negative feelings. I am internally stewing and watching the clock for the shift change. My kindness is sweating bitterness and there maybe a snap drawing near!
The little boy next to us is scared. He cries in pain and fear every few hours. Maybe he'd like a new nurse too.
Ok vent over...
MRI with contrast done. Jacob went down at 5:30 am. I told then that Dr A was going to look at him first and then decide if today was the best day for the MRI but that didn't happen. I also told them that I wanted them to do it later because all of his doctors usually come around 6 am. But whatever. Jacob had his MRI with contrast and it's over. It was not fun as you can imagine but it's done and Jacob is happy that's behind him. Jacob did miss Dr Kesser's resident who came to remove the drain from the abdomen and change the dressing. They may leave it off for a while too. He's coming back after his first surgery so that will happen later today. Hoping with the drain out the incision will bother him less. It starting hurting last night. Neuro came in too and they will also come back later. We haven't see Dr A. I wish he would come in. Jacob looks better this morning. His facial weakness seems to have improved. I've asked the nurses to not give him any ativan until he sees Dr A. It makes Jacob so sleepy and non responsive. He only had it once yesterday. Jacob is still getting Zofran, antibiotics, steroid and pain medication, Fentanyl. Today PT is going to get Jacob up to walk. He needs to move around more. He's getting so stiff and he's in the "fear place" he gets into where he's scared move. Mind over matter!!
Day 2 recovery underway.
God grant me patience and flood my emotions with kind thoughts!
Wednesday, October 30, 2013
Please don't stop praying!! There's still so much to be done!!
Casey Carter is making the long drive home tonight. May she be safe. Thank you for once again enduring a terrifying surgery wait with me. I love you!
Dr. Kesser came in while I was posting and said Jacob's facial movement was better right after surgery and said the change is most likely due to swelling. Hoping to see Dr. A soon.
Please continue to lift Jacob in prayer. His little body has a lot of work to do and needs God's help!
Monday, October 28, 2013
Sunday, October 27, 2013
Friday, October 11, 2013
A few things have changed since my last post. I am thankful to report Jacob will be having his right vestibularschwannoma (acoustic neuroma brain tumor) removed at the University of Virginia with Dr. Ashok Asthagiri, Jacob's neurosurgeon from NIH on October 29, 2013.
Jacob will be having CT and MRI scans on Wednesday, October 16 here in Tallahassee to determine the approach Dr. Asthagiri and Dr. Kesser will use for the resection. We have not met Dr. Kesser, but he trained at House Ear, which is a leader in NF2 care.
The University of Virginia has a neurofibromatosis (NF2) clinic which is lead by Dr. Asthagiri. Since a vestibularschwannoma (acoustic neuroma brain tumor) resection in a patient with NF2 is significantly different from a standard acoustic neuroma resection performed in a patient without NF2, we wanted to take Jacob to a doctor highly experienced in NF2. There is strong evidence that shows that tumors are more difficult to resect and that multiple nerves may actually be involved in patients with NF2 versus regular acoustic neuromas, therefore often causing worse outcomes like higher facial nerve palsy rates. A neurosurgeon with specialist experience in NF2 is recommended in order to be able understand the manifestations found in an individual with NF2 and take these into consideration when operating in order to make surgery as safe as possible for the patient.
So, I ask for your continued prayers in our NF2 journey. I ask for prayers of peace and understanding for Jacob as this surgery quickly approaches. Jacob will lose his hearing in the right ear and could suffer from facial paralysis and balance loss. There are many other risks, but these are the most common side effects to this surgery.
If you want to read about the doctors please see the link below.
As always thank you for your support. If you would like to help with play dates for Gavin, time with Brie or financial donations for our out-of-budget costs, please contact me.
Monday, September 23, 2013
Tuesday, August 27, 2013
August Update for Jacob:
Sadly, I've spent a lot of time on Caring Bridge the past few days. Sweet little Grayson is battling an aggressive leukemia and beautiful McKinnon is undergoing a 12 hour brain surgery today. Several other children I follow have had MRIs and test results this week and I am thankful that they received good news. Reading my emails this morning, my dear friend Laura's daughter, Ali, in Chicago, is having spinal surgery this Friday thanks to a nasty NF2 tumor.
My head is spinning, but I feel the need to suck it up and write an update for my Jacob.
In very few, and considering the circumstances, Jacob is really doing well. Over the past several months of triathlon training, TD and I dragged the kids along with us to swim, bike and run, Jacob included. Last week he swam several laps in the pool, rode TD's bike for a mile and did a five mile walk-run with us. I've been so happy to see him so active. Jacob even willingly went hiking TWICE with his teacher, Mr. Vogt. He hasn't loved hiking in many years because of how difficult it had become for him and he had so much fun getting back on the trails. Jacob had an amazing week at Camp Boggy Creek (which, if you've spoken to him in the past few weeks, you should already know since he LOVES to talk about it!). It was a bittersweet last trip to CBC. I am so grateful for everyone who makes CBC work. The pure joy it brings to these kids who have battled cancer and other types of life-threatening diseases and disorders is awe-inspiring. The week after CBC, we celebrated Jacob's 17th birthday in St. Pete with family, a trip to Busch Gardens and a beautiful day at the beach. I love St. Pete beaches. School started back on Monday and things feel somewhat normal in our house. Jacob's 11th grade year is in full swing, Boy Scouts have started back up and he returned to OT and PT. That will all change soon.
I broke the devastating news to Jacob when he returned from camp. Seeing how crushed he was that his right vestibular schwannoma couldn't be treated with radio surgery broke my heart, again. Jacob's initial reaction was that he was not having any more surgeries and he was keeping his hearing in that ear. I left him alone for a little over a week without saying anything else. I decided that at Jacob's age it should be his choice until it becomes life-threatening. We've never forced Jacob to do anything surgically. Even when the doctors recommended Jacob have his right eye removed, we waited years until Jacob said he was ready. After our trip to St. Pete, we made our way home through Orlando and Gainesville for doctors appointments.
We met with Jacob's neuro-oncologist at Arnold Palmer to decide if Jacob should continue on the daily chemo he's been on for the last 10 months. Dr. Smith reviewed the scans from NIH in July. Because Jacob's brain and spinal tumors have continued to grow, Jacob was taken off of the Tykerb (Lapatinib). This visit was very sad. Lapanitib was the third and last drug therapy being used for NF2 patients at this time. Jacob had no results from Avastin or RAD001. Our hopes of a chemo shrinking Jacob's tumors are now dead. No one knows why some NF2 patients have results with these drugs and some don't, but I am happy we had the chance to try and was able to have hope for so long. While we were there, Dr. Smith showed Jacob his images and the comparison from the last two years. She showed Jacob the compression on the brain stem and ventricle from his right VS. We talked about the risks of waiting to have the already-golf-ball-sized brain tumor removed and the risk of the surgery at any time. After spending the night in Orlando, we made our last stop before heading home in Gainesville for an appointment with Jacob's neuro-ophthalmologist. Jacob completed vision screaming, a vision field test, optic nerve photos and an exam with Dr. Samy. Even though Jacob's vision has lost a line, one of these "A E K L SD" lines, since January, his Goldman's screening and photos look practically the same. The exam didn't show anything alarming so Jacob's vision is classified now as 20/60. I'm having flashbacks from 2009 when Jacob's January appointment showed nothing alarming and within 6 months Jacob's vision went from 20/30 to 20/200 and no one knew why. Hoping now since his doctors know he has an optic nerve meningioma, they know what to look for if it changes. Praying for stability in that tumor as it could easily leave Jacob completely blind.
After Jacob's visit with Dr. Smith, I revisited the option of having surgery with Jacob. We have high hopes of saving Jacob's facial nerve and any reducing the risk of facial paralysis. There are also swallowing and other important functions that are in more danger the larger the tumor grows. There was a lot of discussion as to where the surgery should be and with which doctor. I will spare you the details of the phone conversations and insurance issues. Jacob will be having the 12 hour brain surgery at Shands UF with Dr. Pincus and Dr. Friedman. Jacob asked if we could wait until October. He is beyond excited about a concert here in Tallahassee he is going to in September. The staff at Shands is coordinating the surgery date now and I will let everyone know as soon as I am notified when it will be.
Today I ask for prayers for Grayson and his family, and for Laura and Tracy and their beautiful daughters, Ali and McKinnon.
As always, thank you for reading.