Saturday, September 5, 2015

pretending in the C-9 cockpit
Eli and I have arrived back home in Alabama today. He was so happy to be home, I didn’t know what emotion I was feeling to watch and listen to him when we got here. Of course, the first thing he did was get the mail. He loves to walk down to the mailbox.

So, we had our meeting with the oncologist at MDA on Thursday, and he agreed that the disease was stable. He is going to present it to the tumor board at MDA to make sure all agree with that reading. Bloodwork that morning indicated that Eli needed a blood transfusion, so it was a very long day. That really hurt since i had intended to pack up the car and get a few hours on the road Thursday.
With the C-9 "Vomit Comet"
So, with it stable, he is suggesting that we continue the treatment along with an added “rescue” medicine that helps to reduce the side affects, and he will be contacting the St. Jude affiliate here to persuade them to do it. If they will not, we will try Birmingham. Eli hasn’t had treatment since August 28, so we would like to keep that to a minimum of two weeks off. I’d like one week, but, in addition to just the logistics of getting somewhere to do it, his bone marrow is struggling to recover his chemistries (immune system, white blood cells, red blood cells, platelets, etc.) So, Dr. Zaky feels like his body needs a break. Of course, if you aren’t beating on those cancer cells, they are growing, but his body is

 tired. So, we are home, recovering, waiting to hear if someone wants to treat him with this protocol. We have sent everything we have to New York, all of the most recent documentation and scans, to see if we can at least talk about their treatment, see if it is even anything we would want to do, but it is such a long-shot from many angles.

I want to make sure that all of you precious people reading and praying know that - in the words of the oncologist - Eli is “very sick.” The
One of the T-38 Talons
stage the cancer is at now, the level of burden it is at, is probably the least it will ever be again. To keep it stable where it is for a little while is really the best we can hope for. He has many lesions, eight that can be counted, and at this point, this disease that has survived such aggressive poison disguised as medicine, is strongly resistant. And, in my opinion, without targeted therapy, without knowing to the molecular level what
Eli and Dom
the cancer is and having something specific to fight it, general treatment tossed at it, hoping it works, just isn’t going to. The scans are stable, but he is starting to show some signs of wear just from having disease on his brain for so long. He had the
Real astronaut food - chocolate pudding.
double vision a couple of weeks ago, he has a twitch in his left leg that is noticeable, his gait is a little wobbly, his speech is starting to slur a little, he is having trouble with the potty. So, this is the first time, he has ever shown any kind of symptom from the presence of disease. Eli’s Creator has kept him immune to symptoms related to the disease for all these years, and blessed him with an unusual high quality of life while he has been fighting. He has, so far, lived with disease for almost two years. That is a phenomenal, and not surprising given the promises by our God the Father. So, I just want to be gently realistic with you about what is going on.

On a different note, a much more fun, upbeat note, Eli and I had a wonderful distraction this week. He was invited to tour Ellington Airport, which includes the NASA astronaut training facilities with
Eli and Ray J
 high-altitude jets and cargo transport aircraft, as well as the C-9 zero-g aircraft for weightless training, and for space research preparation. Our hosts Mona and Terry showed us around, and after meeting astronaut Ray J and Dom at
Eli and Dr Ochoa
Ellington, we visited the Johnson Space Center, which was totally beyond my scope of appreciation. It was the really so incredible to think about what did and does go on there. We saw the future and the past. To stand at “historic” Mission Control where the Apollo 11 mission to the moon was conducted, and the dramatic Apollo 12, was by far probably my favorite thing of anything we did in Houston. Eli couldn’t really grasp it, but he did seem to enjoying know that he sat in the chair the Queen Elizabeth sat in when she came to watch the launch.

We saw the Orion, our next ride to space, we saw the new space vehicles, and the robot that will basically be an astronaut butler. We saw the International Space Station training mock-up, and the
Historic Mission Control
 Saturn V. Oh, and Eli was asked if he wanted to meet Dr. Ellen Ochoa, the director of Johnson Space Flight Center who is also an astronaut. He said, “nah.” !!!!! I said, “YES, he would!” Eli is just not impressed by people. It was a long, tiring day that was packed full of interesting things, and such nice people.

It may be a while before I updated again. Our big fundraiser is coming up Saturday, Superhero Day, so I will be working on that and enjoying being home. If there is anything new worth updating, I certainly will, though. Thank you all, sincerely, from the bottom of a broken heart.
The space mobiles, and he robot.
Orion's mission ocntrol
The Orion.

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