Sunday, November 15, 2015

Parts shipped from ROUSH.
Recently, an internet rabbit hole led me to read about the history of rat mazes in medical research. It was interesting as far as just reading something that you didn’t know is interesting. A  modern rat maze is pretty simple, not the labyrinth of the past that I imagined from what I have seen in movies. In the labyrinth maze, the rats find their way by both what is open to them, and by what is closed to them. For
example, they might be forced to go to the left simply because to the right there is a wall. Over the last ten months, it seems like God is guiding us by closing doors, not opening doors.

Eli and I arrived home late Friday night from a quick trip to Memphis for an MRI to check the status of the disease. It has progressed as expected, especially since he hasn’t had treatment since the first of October because we anticipated starting the phase one trial this week. We were frustrated to learn that we are on a waiting list, and would be included in the next round which starts at the end of December. That is too late. So, we called the doctor in Boston back hoping that she can start him on the same immunotherapy medication under a “compassionate use” argument instead of a trial (the do not use trials), thinking that we could start sooner (St. Jude will not treat him under compassionate use because they have a trial with the same medication and want him to wait for the trial. Of course, I say, well, he won’t live to the end of December to be in the trial, so
Vic in his mechanic's pit changing the oil.
 why can he not be considered for compassionate use, and honestly, I can’t remember what his answer was, but it had something to do with how long it would take for him to prepare a compassionate use request and for it to be considered) We tried to contact her late Friday, and have not heard back (we’ve talked with her once already). We had plans to go to Houston on Monday to continue the intrathecal methotrexate, but since he continues to progress, we are going to try another standard chemo through St. Jude. It is an old chemo again, no surprises, but it is one that he has never had, so maybe it will “stun” it a little and hold until we can get going with Boston, or until the end of December. It is not widely used because a common long-term side affect is leukemia, but we are not concerned with long-term affects, and are
Eli and Kris Walker
 just fighting what is in front of us. It will be an oral chemo from home (etoposide), and will have the usual side affects of some hair loss, nausea, immune suppression. He will only be on it a couple of weeks because he has to be off of all chemo for a month before starting the trial.

So, Eli and I are hitting the road now to go back to Memphis to sign the papers, get the meds. I expect to be back Monday night.

I’m sorry that I am just now updating. We got back late Friday, I was so tired. Then Saturday we had plans to spend time with “Bruce”! We have been having so much fun with the Mustang. Roush, a
Ford performance parts manufacturer, donated some cool parts to begin our customization. So, the friend who lives nearby that works for Roush Racing and helped get them involved offered to help put the pieces on, get Vic back in the saddle of mechanic enthusiast. We appreciate the attention that Jack Roush, Kris Walker and the rest of the guys in Michigan at Roush give to Eli to make this experience special for him, and for all of us because we all are enjoying it. Poor Vic was so excited Friday night for Saturday, that he couldn’t sleep. We upgraded the exhaust system, and added a cold-air intake… I think I said that right. And, were very proud to add the “ROUSH” decal across the top. It is a lot of fun to drive, and we are excited to get it to Muscle Shoals, Alabama, this Saturday to for its first car show. When we
 get back, one of my goals this week is going to be to get Eli in the driver’s seat (as in the seat of the person that is driving) to “drive”. The other is to get portraits made with a gift certificate someone gave us a long time ago, and I’m going to work on a concrete piece of all the kids’ hands and feet. A friend’s dad is helping with that. I want to add it to a short sidewalk that I hope to add to the house one day.

Meanwhile, we are pushing our benefit dinner for our non-profit that is December the 10th in Athens. It is really going to be a nice evening, and I hope that anyone that is within driving distance would be interested in coming. Tickets and Team
 Victory 4 All ornaments are now on sale, just go to our FB page or website. We are also about to “unveil” a really cool project that we are doing to support Make-A-Wish. Macy’s Department store hosts the “Believe” campaign through which it will donate $1 to MAW for every Santa letter it receives. The national goal is 1 million letters. Some friends out of Cherokee, Alabama, (what a great little town!) made a special “North Pole Express” mailbox that will be outside of The Grasshopper in downtown Athens for kids to mail their letter to Santa. When they open the door to mail it, Rudolph’s nose lights up! Presh!! We will collect the letters, and my sister, who is a MAW volunteer, will get them to Macy’s in Birmingham. So, watch closely for that when we launch and get it placed.

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