Sunday, October 11, 2015

Eli and I are home from Memphis, and we will have a couple of weeks before going back to kick off enrollment into a phase one trial. We have pretty much decided to go with a very experimental trial sponsored by the Pediatric Brain Tumor Consortium, and we can do it through St. Jude at home. (I was wrong in an earlier post about what it is called or what it uses). It is kind of an immunotherapy, it uses Pomalidomide, which shuts down blood vessels that feed cancer cells, and it has some immune activation properties, I guess is how I can say it. It is a new trial, a dose escalation test, and he will be patient number 4, so the first of the up-dose. Basically, they had some success in another cancer, so they want to use it on an array of other resistant cancers. Eli has classic medulloblastoma, sub-type four with metastases. This is something that is tough to reproduce in the lab for testing, therefore no success in finding treatments. They need humans, like Eli. This is not curative, we pray that it slows it down, which is at best. His scans show new spots around the ventricles, and spots that were only visible on a specialized MRI view in February are visible now on regular MRI scans. He is covered up with it on his brain, but his spine remains clear. He continues to feel good. His blood work was all normal, they even took him off of the tiny thyroid pill because it was normal. So, he is on zero medicine. none. Vitamin D, that’s it. So, if it wasn’t for the monster that is slowing killing him from the inside out, he would be a normal boy. That is a tormenting thought, when I look at him.

We did get to go to a local car show Saturday, and it got us excited about Eli picking out a Mustang when we sell the camper and Vic’s truck. Of course, Eli doesn’t realize his prognosis, and talks about one day when he drives. It is heartbreaking, but you just listen and dream with him. What else can we do, and dreaming about that experience is no different than what any other 10-year-old boy can do. So, many experiences with our kids we take for granted, and picking out their first car is one of them. When we get these two items sold, we will know how much we are working with to spend, and then I will see if I can figure out some kind of online, entry submissions or something like that and then you beautiful people can join in the hunt. It’ll be fun. We’ve got a friend here locally that we went to church with that works for Roush Racing, and then our buddy the Mustang Man at the local club, so I’m sure they wouldn’t mind being our consulting experts.

Lastly, a reminder, especially if you are within driving distance, that our non-profit Team Victory 4 All will be hosting our Hope 4 the Holidays benefit dinner December 10, with entertainment by Huntsville Master Chorale, and keynote speaker Dr. Carolyn Russo, the medical director of the St. Jude affiliate program, and catering by the always wonderful Suzanne’s Bakery and Eatery. Gather up seven of your favorite friends and family, and buy a table of tickets, or sponsor this special evening. Who doesn’t want Hope 4 the Holidays.

The following is info about the camper, and Vic’s truck. Please share it, and send it to whomever you think is interested. I’ve two inquiries about the camper, so far, but inquiries are not bought.

For sale: 1970 Chevy C10 Cheyenne; V8 350 (bored 30 over); Edelbrock Performer RPM package (heads + intake + cam); Holley 3310-4 carb; KB pistons; Hooker headers; Flowmasters; 4 speed manual; mileage unknown; $5K; email Vic at View the truck here.

For sale: a 2013 Livin’ Lite 10.0 anniversary edition pop-up camper by Quicksilver. We received it new. The all-aluminum frame is 14-feet long closed up, and 20-feet long open. It has a two-eye propane burner stove-top, and a sink. There is an a/c, two fan/light combos, a fitted rug in the kitchen area, an extinguisher, first aid kit, an outdoor clip-on side table, propane tank (unknown how full it is), lots of storage under the seats. It sleeps 6, with two queen end-beds, and the dinette set converts to a small bed. The dinette set is also removable for picnicking outside, cushions are all marine-grade water-proof. The tent cover is silver with zip-out shade and privacy covers. Set-up is all manual. It has been used for two weekends. There is a scratch on the side, and one of the mattresses has piling on the fabric. The camper still smells new when it is set up. The stove-top has never been used. We are asking $8500 and will throw in the woven “Victory” flag matting for the outside. Only very serious inquiries, please, and we will not come down on the price until we feel it has had sufficient time to circulate. Please, email me View the camper here.

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