Monthly Archives: March 2017

Day 284: Houston Day 3, March 3rd, Part 1

Howdy partner! No I’m just kidding. Long time no update! Today marks our 3rd full day in Texas. I’ve got to say, I really enjoy it down here. I wouldn’t want to permanently live here, (too hot, humid) but it’s very friendly and clean. 

So here’s an update: Trevor (my father-in-law), brandon, and myself left Monday morning to drive halfway to Texas. We stayed at Wade and Sydney’s place in McCrory, Arkansas. Then we got up early, had breakfast with our dear friend Jeanie Linton at the local sonic, and headed on our way for the second half of the way to Houston. Each half takes about 8 hours, give or take a little. Thank you boys for all your driving and patience!!! 

We arrived in Houston, safe and sound, about 7pm on Tuesday evening and checked into our hotel room. One of my dad’s cousins set up some situation where we didn’t have to pay for our hotel room for a few nights and, let me tell you, this hotel, The Crowne Plaza – River Oaks, has to be one of the nicest hotels I’ve ever been. Fancy shmancy!!! 

We’re on the 9th floor and have a beautiful view of the Houston skyline. The weather this week is perfect, and I’m being taken care of like a queen. Thank you God for all your mercies and blessings, even though I don’t deserve them at all.

Next part of the update: we left Monday so as to be here as soon as possible in case they called and said I could start treatment the next day – we just wanted to be ready at the drop of a hat. Now this is where it gets confusing (I barely understand what is going on, so I’ll give you my general info): to be fully into the trial for Val-083, M.D. Anderson has to do all these checks on my data and biopsy (tissue sample of my tumor). They have to do it specifically at the their lab with their equipment because, it being a trial, everything must be ‘air tight’ – having gone through psychology research and data analysis classes I more than understand the importance of maintaining the integrity of your samples and such. Everything must be just so to ensure validity and reliability. 

Anyways, all that aside, my tissue sample that MD Anderson needed was at CHI – St. Vincent’s, where I’ve had my two surgeries. So Anderson requested the samples and so did St. Jude’s (I have no idea why? But hey, you want to see my nasty brain tumor and run some tests, go for it – if it could possibly help someone, at all, that’d be amazing!). 

So, st. Vincent’s sent a sample to st. Jude’s and to Anderson. St. Jude’s got their sample and I don’t know what happened, but something on the Anderson side of things got confused or messed up and they didn’t get the sample. So I can’t be fully enrolled in the trial until some test is run specifically here, and that test can’t be run until they receive the sample. Once they have the sample it can take up to a week for the results to come back. That being said, because it seems to have been some clerical error (nothing was our fault) everything is being expedited and we should know later today or Monday. There’s only a teensy tiny chance I wouldn’t be fully accepted into the trial. All this test we’re waiting on is to 100% confirm what we already know – that I have GBM. Kinda dumb, huh? Lol 

Now, I might be messing all that information up, but that is my understanding of it all. I try my best to remain ignorant of most all of it. I am not able to control my mind enough yet to not spiral into paranoia and depression. I’m praying a lot and am finding out more and more each day how amazing my God is. It is such a relief to be able to just leave it all with Him. All the fear, the worry, the doubt. I don’t have to carry any of it, he takes it all and instead gives me peace and calm and a stillness I can’t even begin to describe. 

Currently, we three musketeers are just hanging out here in Houston. We are working on getting in contact with my social worker to establish a more permanent living situation, because we can’t stay in a hotel for two months  straight. 

Additionally, Trevor is doing an amazing job at staying on Anderson so that they stay on their toes because they clearly are off their game. Brandon is pretty upset because I’m currently not undergoing any treatment. My surgery was January 18th and since then, nothing has been done. That makes both of us very anxious. It makes him mad too. 

Update part three: this past week, Brandon set me up an appointment with an eye doctor to help with my double vision. There were lots of tests and things, and the conclusion is this, I need glasses. Not just one pair, but 2. One pair for distance, another for closer up. Nothing is just simple, huh? They should be ready and everything sometime next week. Once I get those, my balance and wobbling should be a lot better. Currently, I’m very unstable and have to receive help just walking to the bathroom or getting in or out of the car. I use a shower chair again and a walker. That all sounds so complainy – I’m sorry. I’m just trying to update everyone fully. Glasses should improve everything, because a lot of the balance issues and such are a result of my double vision. 

Update part 4: I am not sure how long we’re going to be down here. My very loose understanding is that we’ll be here as long as we need to – that’s what dad says. Speaking of whom, I am missing my family like crazy. Nathanael has a big choir competition at RR this weekend, hardy turns 20 on the 13th. I feel like I’m missing so much! 

In the past year-ish I’ve come to realize that my mom is my best friend and it’s really difficult being away from her right now. Same thing with dad. My parents are the most important people in my life and I’m 16 hours away from them. I haven’t broken down yet, but it’s gunna happen sooner or later. I’m 23 and I want my parents! 

Now, this post has proven to be incredibly long. (12:15pm) Probably because I’ve been avoiding writing one. So I’m going to do a part 2 later tonight. Have fun with this one!