Friday, November 11, 2016

Thank you to all of our veterans that have fought for and protected our country and the rights and freedoms we enjoy. All aspects of my life have had a - sometimes painful - reshaping of perspective and appreciation over the last five years, and being an American is one of those areas. The parents medulloblastoma page that I am part of
regularly shows posts from parents in other countries that want to get to the U.S. for treatment for their child, so I do not take for granted our access to treatment in this wonderful country that I am so proud of right now as a whole.

Eli was able to enter his mustang in our local Veteran’s Day parade as a member of our local Mustang Club, and that was a real honor, and thrill for him. Then, we piggy-backed with Caleb’s class on a field trip to the Alabama Veteran’s Museum in our town. Plus, we voted! It was fun for the kids to be interested in the election this year, in contrast to my sister and me when we were young. My dad was a history teacher at one time, with his degree in that, and enjoyed history, politics, and the process.
That, and working hard were his hobbies as opposed to watching sports, or hunting, or golfing… ya know anything actually fun. During the 1980 election between Reagan and Carter, he thought it would be a good dad thing to include us (ages 11 and 9) in his interests, and
something we would remember looking back on as being a part of a momentous occasion. So, he actually took us to the courthouse, I think because that is where they voted back then, and returns may have been announced from there as well. We set up our green and white webbed lawn chairs outside the historical building to enjoy the ambiance of an election night, and the metal frames had not been settled in the grass for more than one minute when we complained that we would be missing Laverne & Shirley if we stayed much longer. Disgruntled and disappointed, he immediately collected the chairs and we went to the car to come home. He did always like telling that story about his failed attempt, and Wendy and I still joke about it. I was a news reporter for a little while before he died, so I got a chance to talk some politics with him as an adult with some interest, and I am thankful for that very short time that taught me a lot about him.

Other than that, Eli has had some quick appointments, just blood checks, and we were able to
participate in a get-together with his youth group from church. School work is going very slow, he is still really tired in the mornings, but we are continuing to wean his seizure meds, so I hope that will help him wake up a bit as he works off of those. Of course, that hasn’t stopped him from getting his OT work-out with Legoes! We have a “normal” week ahead of us, then we will be going out of town on Friday for the weekend with a church group to the Creation Museum in Kentucky. The kicker is that Eli and I have to be in Augusta early Monday morning, so we will have to drive from Kentucky (the northern most corner) to Augusta, an eight-hour trip through east Kentucky and the mountains of east Tennessee and Georgia. Would love the trip if I didn’t have to fly through it without stopping (still it’s not the drive to Houston!). He will have an MRI to get a base for treatment going forward, and to have something to compare with an MRI in December that is part of the trial. This November scan will determine if we continue treatment as is, or if we do a round of pinpoint radiation (to start immediately after Thanksgiving, which means that Eli and I would stay in Augusta for four weeks), or if we change up the chemo. So, December hangs in the balance for us. A very active month as a family because it includes his birthday (the 3rd), which is his 12th birthday, considered in our family to be a “big birthday” since we only celebrate “big” on the four’s, but in reality, every one of Eli’s birthdays is big. It includes the Christmas parade that our non-profit will be in, and it includes the big benefit dinner that I’m excited about. Then there are school activities with Caleb as the semester wraps up, and Christmas prep for the house that the kids lament never gets done, and then Santa prep, which takes quite a bit of planning much less execution. And I really wanted to plan something for the five-year anniversary of his diagnosis because as of right now, that date will arrive with us in a much different place than anybody expected, so I’d like to celebrate and offer prayers of thanksgiving and praise at that time. So, I will really hate to be gone the entire four weeks of December, which means that we would literally come home Christmas Eve. Still how thankful I am to have some options - albeit scary - on the table for him. So, none of that is set, everything depends on this MRI the week of Thanksgiving. Please, pray for the two to be stable or gone, then we will just keep moving forward as we are. So, I mentioned that we are in for a “normal” week, but in reality this week I will be preparing to be gone for a month just in case, so you may not hear from me again until we are in Augusta. Thank you for always remembering Eli, for the continued cards that you send, and for the fundraisers for him for us to use in birthday planning, a day I did not think I would ever get to plan.

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