Tuesday, October 4, 2016

Caleb came to me after waking one morning, and said, “I just went to the bathroom. And, I’ve got good news, and bad news.” If there is ever news from the bathroom, I can’t imagine how it could be good. It’s stuff like that all the time around here.

It has been a busy this week, getting Eli set up for surgery, wrapping up Childhood Cancer Awareness month, and now moving into the
foundation’s final fundraising push to the end of the year. Kids fight cancer all year long, so we continue fighting, too. We’ve got a car show October 15, a Coffee for Cancer breakfast on October 21st at Suzanne’s again, and our holiday benefit dinner December 8. We are looking for sponsors, so contact me if you would be interested. But, if you ever just want to donate to our non-profit org, you can paypal to donate@teamvictory4all.org. We are excited about how we are growing, and some changes we are making for that to happen. This year, we are donating to the
 Children’s Oncology Group.

Eli is planned to start the surgery process on Monday. I expect to leave on Sunday, although no one has contacted us yet. Not sure yet exactly what day surgery will be on, but the surgery will be approached through St. Jude, then take place at LaBonheur in Memphis. So, we will have to be seen by Eli’s original St. Jude oncologist to get the okay from him, and he is expecting us, and then Eli will go over to LaBonheur for the surgery. I am assuming that he will be in the hospital about a week if everything goes perfect.

When surgery was being discussed as an option, we asked that our original neurosurgeon be consulted both for his opinion, and for performing the surgery. Our experience with him is that he is very conservative, and Eli’s physical, and neurological excellence over these years has been
Jennifer Brooke racing.
attributed to his original resection - which would be Dr. Klimo. I felt like a “yes” or a “no” from him would say a lot about surgery as a choice. Just for additional input, I asked Dr. Johnson to consult his own neurosurgeon. Both were willing to do the surgery, and to do both tumors at the same time. So, we felt like that gave us some affirmation to surgery as a good choice, the mere fact that they would do it. Neurosurgeons tend to consider metastatic disease to be inoperable, so it is a big deal that they would do it. And, for this surgery, the two tumors are (as Eli’s luck would have it) on the opposite sides of his head. So, the surgery will include two “bone flaps”, two places that the skull will be cute open. So, again, I am surprised they both independently thought this doable, but Dr. Johnson said, “If a neurosurgeon is

Our only other options are: more radiation, and he has already had more than anyone should have in a lifetime; or change the chemo to a more aggressive chemo, and he has already had so much chemo, not sure that his body could take it long enough to affect the tumors. And, no guarantee that
Eli in the Mod Shop car.
either of those will affect the tumors at all, although radiation is known to have a definite affect to varying extents.

Surgery is an enticing option, and not one that we usually “enjoy.” It’s guaranteed to affect the tumor, and likely wipe those tumors out that day. And, it’s an option that fits my personality needs because it’s aggressive, it’s quick (relative to weeks of radiation, and months of chemo to achieve the same outcome), and results are measured immediately. Plus, for two years, it has bothered me that Eli’s relapse has not been biopsied. We will have tumor tissue to test with surgery. We just assume that what he has now, is what he had originally. We are more educated on testing, what tests we want run, and Dr. Johnson can test the tissue for the experimental medicine to see if it is doing anything. So, we learn more about Eli’s cancer, and we learn more about the trial drug. Yet another way that we can take what Eli has endured, and turn it into a positive by contributing to research - frontline research that is being applied to other kids now.

But, it is brain surgery, his sixth time to be opened up for something. At some point, his brain is going to say, “nope, I’m tired of y’all coming up in here!”, and revolt. When they remove tumor tissue, they always take a little healthy tissue around it to make sure they get all of the cancer, so how much of that healthy tissue can he keep giving up. So, much has already been destroyed from previous
The cars are "stacked" for the start.
 treatments, and radiation. He may not be the Eli that we know when he comes out. His mood and emotions could be different, his speech could be affected, reading comprehension could be affected, his short term memory could be affected, the list goes on. This is not even to mention the potential complications a five or seven hour surgery presents to a healthy person, much less to a child with compromised health. The stakes and the pay-off could hardly be higher with this option. But, Dr. Johnson said something that really struck me about Eli’s tumors they are targeting. “If he’s going to have tumors to do surgery on, well, the location of these are not too bad,” he said. Why was I not surprised. Though it is Eli’s luck to have the two tumors be on either side of his head, we feel so blessed at God’s providential hand in the placement of them and know that there is a reason. So, many kids don’t even have surgery as an option, as awful as it is.

Eli continues to seem to feel really good, and I think is not having any symptoms - another one of Eli’s direct blessings. Dr. Johnson said most kids would be showing symptoms by now of the first tumor that is growing. He was even caught singing again. Hg and I were in one room working on something together, and he was around the corner doing something in the kitchen. Hg stopped, lifted her head, and said, “Do you hear that? What is … I think that is Eli singing.” He goes on walks with Abbey for the dog, too, and prepares his own meals when he doesn’t like what I have fixed, and he helped with laundry this morning. He is struggling with the material for school, but I would expect that tumors or not. Any of this could turn around in a day or two, but for now, we continue to enjoy the eye of the storm.

So, thankful, too, because he had a big weekend at a Ford event in Bowling Green, Kentucky. It was a little bit unexpected what a big deal it was, because we went to it for something other than what the event was for. You might recall that Vic put a supercharger on Eli’s mustang a few months ago. He has been trying to get the perfect tune on it from the manufacturer, but it is so hard to do over the phone. He saw where the manufacturer, VMP, which is headquartered in south Florida, was coming to Bowling Green, and bringing its dyno machine to measure performance. So, he made an appointment with them to tune Eli’s car in person at this event, and to put it on the dyno. You can not imagine how anxious and excited Vic was for this, something he had been trying to perfect for months. So, we started looking at why VMP was coming to Bowling Green, and it looked like a fun “little” event. I sent a message to the Facebook page of the National Mustang Racers Association about the “World Finals” event, asking if we could get a special parking pass (so that Eli doesn’t spend his energy walking from the cow pasture up to the event). She gave us a pass to enter into the car show, and tickets for the event. As is our usual, we were underprepared for how awesome this event was. VMP was there as a vendor, and we also ran into more friends as vendors, the Mod Shop, which comes to Eli’s Florence, Alabama, show. Plus, someone from a Nashville mustang club even recognized Eli. They had come to that very first car show when it was so cold in 2014. The drag racing was really fun to watch, very cool. It was the finals for the racing season, but I think anybody could register and run their car before the actual sanctioned racing started. So, it was fun to watch all the different cars, even street cars, race. It’s kind of what Vic is wanting to move the mustang toward doing, but seeing so many blow an axel, started making him nervous. I did quickly grow tired of the smoking, cursing, and what is absolutely the most ridiculous and rude things I have ever seen - “vaping”. Besides that it is stupid looking, the dense cloud of smoke is invasive, and stinks. The VMP guys were nice, and took a lot of time with the car, and they seemed genuinely excited about the numbers. Vic was ecstatic with the outcome.

Our next car show is scheduled for October 15 at McFarland Park in Florence, Alabama. It is what we are calling a “partner” show, because we are not hosting it. It is doubtful that Eli will be able to make it, but I don’t know, they can be pretty aggressive with that healing push, so we’ll see. If you are near Florence - or not near Florence - make plans to attend, so that we can grow this show.

I have another busy week, preparing the house for me to be gone for a while next week. So, it may be a while before you hear from me again.
willing to do surgery, you do it.” Thankfully, Dr. Johnson, thinks of everything, and wrote the trial so that kids could take this little side step, without getting kicked off the trial. It’s always bothered me that trials seem to be written without the understanding that if a kid is signing up for a phase one trial, they are not a fresh kid. They are going to have some issues that might not fit in a neat, little research box. Another reason why we adore this doctor, and that I thank God every day for guiding us to him.

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