Friday, May 25, 2012

May Wrap Up, Part 1

With Memorial Day quickly approaching, I want to take a moment to remember all of those who have given their lives in service for our great country. I am so thankful for my freedom! I can't begin to comprehend the depth of their sacrifice and the sacrifices of the ones they left behind. I hope God blesses each and every one of them. I will also be praying for our soldiers serving today!

With that said... Aren't you happy it's Friday?! And a three day weekend?! I am! This weekend we have big plans for yard work and general outside clean up. We have been so busy that our yard has suffered a bit. Although the porches have been blown off, the sticks and weeds are taking over and my garden is a mess. I’m very proud that I was able to grow several very small, but very yummy, carrots from seeds this past fall/spring. I’m sad that it’s time to pull up the last few that are still hanging on. I think I will start them earlier this year. Carrots are the first successful thing (other than wildflowers) that I have ever grown from a seed! TD brought home a list of flowers that attract butterflies and we have plans to start a small butterfly garden out back to keep Leonard and Sheldon (my finches) entertained! :) Gavin and I love butterflies too, so I’m excited!

I have a picture blog started (but currently incomplete) of the NF Walk in Orlando we attended the weekend of May 5th. After all these years it was our first NF Walk. It was very small this year, but we have big hopes of it growing as the years go on. The people involved raised $18,316.00 for the Children's Tumor Foundation that only supports NF1, NF2 and Schawannomatosis. I was very proud that our family made up a huge number of the attendees. Jacob was honored with an NF Hero award and TD wrote and spoke about Jacob's bravery. It was a very special moment. It was a shame that Gavin fell sick that morning with a fever and an ear ache. He pushed through, but we didn't get to enjoy our time at the walk the way I had hoped. We had to replace two of our van tires that morning before we could drive back to St. Pete, which was a bit stressful, but being part of the walk was worth it! It will be something we will definitely go to again (and again)!

On May 7th, Jacob, Gavin and I traveled back down to Orlando for Jacob's one month appointment with Dr. Smith. Jacob went to school Monday and we left afterwards. I wish I could say our four hour drive down was uneventful, but unfortunately I had another tire start to separate. Three new tires in one week can really put a hurting on your bank account! By the time we got to Orlando, Sears Automotive was closed and I wasn’t able to take the van in until the next day. At the time, I didn't know what was wrong with my front end, just that I knew I wouldn't be able to drive it home. TD's sister, Rachel, lives in Orlando and her significant other, Joe, (he's too important to just call “boyfriend!”) came and picked the boys and me up for dinner. We were surprised to head down to City Walk for dinner and games. It was my first time at the Nascar CafĂ©… And it was delicious! Jacob and Gavin loved the game room and playing with Aunt Rach and Uncle Joe, who spoiled them with all the games they wanted. Watching Jacob drive the Nascar virtual game was pretty amusing, I must admit, and watching patient Rachel play virtual put-put with Gavin over and over and over made my night. We didn't get back to the Ronald McDonald House until after 11:00 pm, but the boys were so happy and had enjoyed themselves so much, it took the sting out of having to go to Hematology and Oncology Clinic in the morning.

We got up super early and headed to the hospital for Jacob to have blood drawn for fasting labs and then drove to Chic-fil-a. As soon as I told Gavin were were taking Jacob to the hospital in Orlando he asked to go play at the "tube thing." I promised him we could go if he was well behaved for our drive. Since we weren't able to get there for ice cream after dinner Monday night, we headed there for breakfast. We ate and Gavin played and then we headed back to clinic. Hillary (ARNP) was really happy that Jacob has been tolerating the Affinitor so well. His labs looked good for the most part. A few things were low, like Jacob’s phosphate, but nothing for us to worry about now. She did Jacob's exam because Dr. Smith was "on service" and Jacob looks good. We discussed whether to increase Jacob's Affinitor dose. It is thought that tegratol, the seizure medicine that Jacob is on, can make the body metabolize other medications quicker than average. Jacob is on a slightly lower dose already than what is recommended for his body weight, but since Jacob was doing so well on the current dose, Hillary wanted to do a "trough" blood test to see the level of Affinitor in Jacob's blood after a 24 hour period. Those labs were sent out to Mayo and were to return in about a week. Hillary already knew that Dr. Pincus wanted to do surgery this summer on Jacob's tumor at C7. I guess her and Leigh Ann, Dr. Pincus' nurse practitioner, are still close.

I talked with her about my conversation from the day before with Dr. Asthagiri. I knew Dr. A would make me feel better about wanting to wait to do the surgery. He said since we are having Jacob watched so closely for any changes that he believes it is still safe for us to wait, but stay prepared for the possibility that it may have to happen very soon. Hillary confirmed that the wait before surgery while on Affinitor is two weeks, which is a safe time frame if Jacob starts showing serious symptoms from the C7 tumor. Judy is watching him too - every Monday at OT. So we have decided to wait and not schedule spinal surgery for Jacob this summer. I would never want to ruin his summer anyway. I would much rather him make up school work. Our summers are sacred! We have not decided what doctor we want to perform the surgery though. The big question left for me is, “To fuse or not to fuse?” Please pray for God to lead me to the right decision when the time comes. So our clinic appointment was short and we were on our way by 11:30. After an hour at Sears Automotive and lunch we were headed back home with a prescription of Affinitor and continued high hopes!

To be continued....

Thursday, May 10, 2012

Brie's 8th Grade Class Adventure

Brie is home now and was full of excitement and stories from her 8th grade class trip to Charleston, SC and Washington, DC. 

Monday and Tuesday
Leaving Tallahassee at 5:30 am Monday morning Brie was happy to make it to Charleston, SC for their first stop on their trip.  A few things Brie enjoyed in Charleston was the night time ghost tour in the historic district, eating at Bubba Gumps, a ferry boat ride (well, kind of) with tour of Fort Sumter and a beautiful horse drawn carriage ride through downtown Charleston.

Brie's pics aren't great from her phone (she forgot her Sony camera charger), but they are better than nothing :)

The ferry boat crashed when docking
at Fort Sumter.  Brie said it was
crazy scary!
View from the back of the ferry boat.
The bridge in background looks like the
Sunshine Skyway, but it's the
Arthur Ravenel Jr. Bridge over the Cooper River
connecting Charleston to Mount Pleasant

Fort Sumter

An original battle flag at Fort Sumter
from the Civil War

House Brie thought I would love
in downtown Charleston

Horse drawn carriage

Brie's favorite house in Charleston

Claire being silly at the Tervis store. 
We love our tervis tumblers!!

Wednesday, Thursday, Friday
It's hard to believe how many places were squeezed into three days in Washington, DC, but some how they found time to visit almost everything on their schedule. 
They toured Fords Theatre and Museum, FDR Memorial, Jefferson Memorial, and Dr. Martin Luther King Jr. National Memorial.  Also the National Cathedral with guided tour, and Mount Vernon.  Brie loved the International Spy Museum.  It was one of her favorite things.  They also toured the Capitol, had lunch and walked around Union Station, went to the American History Smithsonian and National Archives. At the Holocaust Museum Brie said she was extremely touched and pained by talking with a Holocaust survivor. I was very proud to see the maturity and depth in my daughter listening to her tell me about this experience.  They visited Arlington National Cemetery, Kennedy Gravesides, Tomb of the Unknown Solider and Changing of the guard.  While at Arlington the kids visited the grave of Robert Allen Wise.  Robert was the first solider from Tallahassee killed in Operation Iraqi Freedom.  He was a graduate of Godby High School and also a classmate of Mr. Wetherington. Robert was an avid soccer player so in his honor, the students placed a signed soccer ball against his headstone. According to Cobb's principle, visiting his grave is something the school has done for the past four years and has been a very powerful and moving experience for the students. This is another experience that was very meaningful to Brie.  Lastly the kids went to the Lincoln Memorial, Korean Memorial, Vietnam Memorial, the Air & Space Museum, Natural History Museum and American History Museum.  Before getting on the bus to make the long trip home the group rode the Metro to shop at the five story Pentagon City Mall.......
I can confidently say I feel like we got our monies worth!  Thank you to Papa and Nana Badger, TD,  Pop Dana and Gramma Gina, Aunt Becky and Uncle Todd, and Papa Billy and GG for making this trip possible for Brie!  I know these are awesome memories she will hold onto forever!

Brie, Madison, and Lauren


Brie's text to me read "Obama'scrib"
My reply..."Not for long I hope"

WWII Memorial (My favorite memorial)
with the Washington Monument in background
Memorial Gold Stars
Memorial Freedom Wall includes 4,000 gold stars
Each star represents over 1,000 Americans who made the
ultimate sacrifice to preserve world freedom - over
400,000 Americans in all.

The great Lincoln!
Ted Bundy's VW

Bonnie and Clyde Car

For some reason the original electric chair
and lethal injection chair were interesting to B

Brie said the National Cathedral was breathtakingly beautiful.
I hope to go there next DC visit.

Vietnam Wall Memorial

Mr. Wetherington

Really sorry I couldn't get this photo to rotate

Wednesday, May 2, 2012

I wonder how many somber drives home from Gainesville I’ve made in the last twelve years?  A hundred? Maybe more?  A hundred and one after yesterday.  I always wonder why I allow my thoughts to be consumed with bad memories before and after the testing and clinic appointments.  Is it to torture myself or is it to remind me how much Jacob has been through, and how much as a family we have overcome?  I am almost thankful for the two hour drive home, giving me the much-needed time reflect on the day and to try to find peace before I’m shoved back into life's routines.  Finding peace inside me is a huge work in progress.  I faithfully pray for this on a daily basis.  How can someone find peace in the NF2 storms?  At one time, I would’ve found my favorite bar stool, in my favorite bar, called TD and my favorite friend, and drank until I felt no more pain.  Yesterday I dwelled on the day I got the call at work that Jacob's scan had shown his bilateral vestibular schawannomas for the first time.  The question of Jacob having TS or NF1 was gone.  I had been told to be happy Jacob didn't have NF2, and now they were telling me that’s exactly what he has.  More dreams crushed! That night was a Pockets night for sure.  Casey, thank you for being with me that day and night, crying with me and telling me everything would work out.  For the record, I did not get hammered last night, but I definitely thought about opening a bottle of wine and consuming the entire thing to my head as my husband would say!  During my drive home, I realized how much I have grown, how much I have changed and how love has altered my life.  Loved by God, my husband, my children, my family, my church, and my friends.  This love is how I now find peace in the NF2 storms.  I’m holding on tight because I feel the weather is about to get worse.

 Jacob, Gavin and I went to Shands at the University of Florida yesterday to see Jacob's neurosurgeon, Dr. David Pincus.  We see him once a year, or more if there are any problems or questions.  We were due to see him in January, but I changed it to February so I would have Jacob's scans from NIH.  Then, Dr. Pincus' office changed it to the end of February, and then March, and then April, and finally to May 2nd.  I was very frustrated, but I think very highly of Dr. Pincus and value his opinion.  I had been waiting for months to see what he thought we should do about Jacob's growing tumors.  I sent numerous emails and a very detailed letter attached to Jacob's MRI CD that I mailed, describing the issues we were concerned about and what changes Jacob's scans were showing.  I didn't receive any concern in return.  I didn't press it because Dr. Smith and Dr. A are watching Jacob so closely, but the feeling was there.

 Our wait wasn't a long one to be taken back to the clinic, and it was nice to see Leigh Ann and Dr. Pincus.  After saying hello, Dr. Pincus asked me what he should be looking at on Jacob's scans… Really?  I found myself huffing internally.  His office had been given Jacob's scans from NIH two months ago for them to review and now it was my job to tell them what is of concern? Anyway, I told him about the right frontal lobe tumor, thought to be a low grade glioma, which has grown .5 cm in every direction over the last year.  Dismissing that worry, Dr. Pincus is sure that it isn't of great concern based on what their radiologist thinks. And yes, this the same radiologist who said Jacob's right adrenal gland was attached to the tumor he had removed in January… Moving on. I told him that Jacob's VSs are still growing, though growth had slowed with Jacob on the Avastin last year, but still getting big.  We talked about seeing Dr. Freeman for radio-surgery on the right VS to attempt to preserve hearing (Please work RAD001!!).   I told him the eppys inside Jacob's spinal cord had grown some, but we have been told to leave those alone, that it is best to wait and watch those.  He told us about a patient of his who had to have one removed last year, a story I could have done without at the moment. Lastly, I told him about the big concern over the C7 tumor.  Dr. Pincus left for a short while and did an exam on Jacob when he returned.  After the exam, Dr. Pincus posted up in a chair and said, "Jacob looks great.  I am very unhappy about this tumor at C7.  It should be removed this summer."  My heart dropped into my stomach.  What was I expecting though?  This isn't the first conversation we've had with a doctor about this evil C7 tumor.  Dr. Pincus believes that summer time is good because Jacob is out of school and, in his opinion, we shouldn't wait for it to cause problems.  On a side note, this is one of the harder internal debates to cope with as a parent. Having to make a decision to have a very intrusive surgery when there are no visible signs of affliction. It devastates me. Anyways, Jacob is still strong on his left side and other than some slight "hooking" in his ring and pinky fingers, he isn't showing any signs that the C7 tumor is doing damage.  Dr. Pincus also said he would do small fusing of the spine after removing the tumor.  I asked about recovery and damage to Jacob's left hand and left side.  Dr. Pincus said he feels like the tumor could safely be removed.  This is the second neurosurgeon to NOT go over the major risks of surgery with me, talking to me about the surgery as if it were easy breezy.  I want the whole truth and nothing but the truth!  I know, without a doubt, this is a huge and serious surgery.  Things like complete paralysis could happen.  I did tell Dr. Pincus that we also had an interest in having the surgery at NIH when the time comes to help with their studies.  Dr. Pincus said the tumor could be sent to NIH if that would help us with our decision.  Jacob went on to have a casual conversation with Dr. Pincus about the deer he killed and his summer plans.  My mind whirled and continues to spin now.

 Jacob and I talked about it on the way home before he fell asleep and he said he doesn't have a preference as to which doctor or which hospital he has the spinal surgery.  Jacob and I both agree that NIH is special because of their commitment to finding a cure for NF2 and their outstanding care for their patients.  I think both Dr. Pincus and Dr. Asthagiri are capable.  Jacob and I like both doctors very much.  I am concerned about Dr. A not wanting to fuse Jacob's spine at the time of surgery.  I am concerned about Shands being so busy (Dr. Pincus' excuse as to why we kept getting bumped) and the arrogance (or over- confidence?) that this surgery is not complicated.

 I put in a call to Dr. Asthagiri and will feel better after I speak to him.  Jacob says he's "ok" and we are praying that this new medicine Jacob is on is going to be miraculous.