August 2016 Update for Tammy-Endings, Beginings and New Roads

     As I stand on the precipice I can’t help but feel the surreal nature that is upon my heart and soul. What force of nature would do such a thing as to shield my feelings and blind my eyes from what tragedy could be bestowed upon my very being? My calmness betrays what true feelings should be running though 13876326_1192438327485814_1831170340025744055_nmy veins. My smile is a mask of fear that should be permeating my very soul to its depths. What of this calmness? What of this surreal nature that is stealing from me the expectation of pain, that is holding in its immense grasp the strings of my heart? For what purpose am I held back from the edge? For what purpose am I blinded from seeing what truly resides at the bottom?
I can only assume that the force is Providence and the reason is hope.
As all of you know us so well by now, you know that it has been a nice relaxing summer full of lazy days sitting around the pool doing nothing. Ya right, its been crazy as usual. I have come to the conclusion that we do not have time for cancer. This summer was nice because Tammy’s chemo was not to invasive so I think in the back of our minds we just pretended that it wasn’t there. It has blown by and here it is the beginning of August and once again times they are a changing. For those of you that don’t know, Tammy accepted the elementary special ed teaching position that opened up this summer. She is excited to be back to being a full-time teacher and nervous at the same time. She really loves working with kids so I know she will be great. It’s crazy that in two weeks we move Tanner into the dorms at KU. We are excited for him. Kylee will be a Senior and can’t wait to join Tanner at KU. Morgan will be a Junior and Tucker will be a Fourth grader. Man how time flies when you’re having fun.
I guess our kids decided that we needed to finish the summer with a big bang. Houston visits always seem to come at the exact worst times. As it turned out the six of us were in three different states this past weekend. Morgan left last Wednesday with her softball team for Arkansas to play in the National Tourney in 16’s. They ended up getting second out of 28 teams and Morgan was named the defensive MVP of the tournament (at second base). We were on the road for most of it but were able to keep up with the games on Game Changer which is a app that is in real-time. Thank you Monique Barras Herbel for keeping that going. Tanner’s American Legion baseball team ended up making it to state so we traveled to Great Bend Wednesday and Thursday for his games. He was going to go with us to Houston but they kept winning. He played Friday at noon, so we packed up the car and threw some extra cloths in for him and headed to Great Bend. They won again, so very reluctantly we got in the car and headed for Houston knowing that the next game could possible be Tanner’s last game of his career. They had a very good season and ended up getting fourth at state. Tucker stayed with Grandma and Grandpa Mann and was the Thaxton representative at the Mann Family reunion in Topeka. Kylee went with us and was blessed to be an only child for the weekend. She was my copilot for the late night driving we did and we had some great talks about the places we want to go, ghost, aliens, denisovans, and Nan Modol.
It was nice having Kylee with us because she helped us focus on other things besides why we were in Houston. We took a day trip to Galveston, did a little shopping, and went to a movie. She helped drain away some of the anxiety for Tammy’s appointment on Monday. We both went in feeling pretty good about how things were going. The real anxiety didn’t set in until Monday morning. As it turns out the dang little #$#$# are growing again. The results were kind of mixed. Some of the smaller ones had not changed or had maybe shrunk a little, but the bigger ones are growing some and that was a concern. Her CEA had also risen to 63 which is about where she was before starting Lonsurf. She will finish out this cycle which is just the rest of this week and then will stop. What’s next is up in the air at this point. There is one more drug in the standard of care. It is Stivarga. We have been hearing about it for a long time and all the doctors have not wanted to use it yet. They say it is a pill that packs a punch. It is the last one so we are there. We laughed a little bit on the way home yesterday that now the Dr’s are like, “It’s no big deal (Stivarga).” The decision that has to be made is complicated. There is a clinical trial that includes Stivarga and some immune therapy drugs. If she starts Stivarga alone she will not be eligible for the trial. The bad part is that right now the trial is only accepting patients in two places Nashville and a place in Illinois north of Chicago. Other places including MD Anderson will eventually have it also but it could be two to three months down the road. The closest place would be Oklahoma City. That would be awesome but we have no idea when it will be open. The trial is in phase 3 so it is showing some positive results so we would like to get her in it if at all possible. The other option is a few phase 1 trials at MD. Tammy meets with her Dr. here tomorrow and maybe he can be some help in finding more information about this trial and be some help in getting her into one. We have a three to four week window here that we need to get something figured out. Before she can start anything they like to get all of the other drugs out of her system. So it looks like we might be seeing some new country in our travels. I will update when we know what is going to happen next. In the mean time, we have a boat load to do before school starts. Thank you for all of you thoughts and prayers.

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