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....

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