Thursday, April 23, 2015

Eli today at MDA.
Eli a couple of days ago.
"Individual commitment to a group effort--that is what makes a team work, a company work, a society work, a civilization work,” said Vince Lombardi, best known as the head coach of the National Football League’s Green Bay Packers, and celebrated as the greatest football coach of all time. Eli’s car show Saturday is a good example of that.

Eli is doing pretty good today, it seems like he had a little better day today. A child (a child that is already fighting disease no less) that has had brain surgery and the flu together just needs many days of rest. The neurosurgeon today said it takes some adults a couple of weeks to recover from brain surgery (and that’s flu-less). He had a more active weekend, right after being discharged and still having the flu, than he should have had while I was gone, so he just had not been given a chance to recover properly. We are not on vacation even though we are in a new and cool place, and Eli’s needs to heal should be put first. He wasn’t as tired today as he has been the past several days. I think he just wasn’t rested, and he was waking up whenever he turned over during the night because it hurt his neck. I gave him some benedryl last night and he said he slept better, which is probably why he seemed better and even looked better today.

I was worried about the shunt setting that was changed to help relieve fluid build up from surgery pressuring the incision. It has been at that higher setting since surgery. I was afraid it might still be pulling too much fluid, since the setting had not been put back. But Dr. Sandberg said he does not think he is dependent on the shunt at all, so it doesn’t matter what the setting is, he doesn’t need it (the shunt would only pull fluid if there was a
Eli's Top Choice. He loves the 2015's.
build-up because the natural ventricle wasn’t working. But, if his body is naturally doing what it should do, there would be no fluid build up and the shut would not be triggered). He had an appointment with Dr. Sandberg today and he said that he looked great. He did not notice any deficiencies (in the way he walked or anything compared to what he saw before the surgery), and his incision seemed to be healing nicely. He did change the shunt setting back to the original setting, I’m sure because he could tell it bothered me and I just could not be settled in my mind with it (If he only knew our shunt woes, right? Those of you that have followed Eli from the beginning, the shunt and the setting has been a thorn. Old thorns don’t die easy.).

So, we have the MRI tomorrow to check disease progression and give them a baseline for starting treatment on Monday. Technically, if the disease has progressed aggressively, Eli could be booted
Jerry Meadows owned Eli's Top Choice and he seemed touched.
from the trial. The trial is for research, and it would not help anyone to take on a lost cause. It would not even help Eli because, if he has progressed that much, he needs something more stable, or he needs radiation again despite the known side affects. Or, he needs to just go home… or go to Mount Rushmore. He really wants to see Mount Rushmore, isn’t that funny. He has enjoyed reading about the presidents, so if he survives this, when we are done, I hope we can take him. Why not? Life is short no matter how old you are. What would be even funnier is that we would make this huge effort to go see this amazing monument, and he would look at it, turn and take his picture and be ready to go. Yes, I know him pretty well.

We should know the results of the MRI by late afternoon tomorrow. The doctors are pretty excited. I told Vic that there would be a lot of doctors in the room for the first treatment, so he should bring his jeans that don't have holes, and I’ll save my good t-shirt without the cracking print for Monday. 

The following is lengthy about the car show, but as a personal favor, please read it so that the people written about receive at least a little bit of the attention they deserve. Saturday - and the days, months, leading up to Eli’s Block Party sponsored by Champion Chevrolet - was the perfect example of teamwork. It was the the perfect example of individuals coming together with selfless commitment for a common goal, and the reason I wanted the word “Team” in the name of the

non-profit group “Team Victory 4 All”. My hope is that our community, our friends and family will realize that what we are doing together is bigger than Eli, or the Williams family, and will feel an ownership to the difference we are all making in the world of childhood cancer.

If someone thinks they are not touched by childhood cancer, they would be wrong. I guarantee that we could find something in anyone’s life, even slight, where childhood cancer reaches him or her - A relative; a neighbor’s relative; a schoolmate’s child; a church family that knows a church family; a child in another child’s school; someone on a ball team knows a child; the bank teller that suddenly is not at work because she had to quit to take care of her child who
suddenly was diagnosed; a future great-great grandchild, or just someone who has read an article on childhood cancer. Childhood cancer will reach everyone either in their family, in their school, in their work, or in their community.

Adult cancer organizations and government - those that want the biggest bang for their pharmaceutical buck - want you to think that childhood cancer is rare, reporting that childhood cancer makes up less than one percent of all cancers. Why go to the economical trouble to develop treatment for one percent. Despite playing it down with that claim, childhood cancer is the leading
 cause of death by disease for children and adolescents, according to the National Cancer Institute, a taxpayer funded organization that dedicates less than four percent of its annual tax-payer funded budget to childhood cancer research and treatments. “Leading cause” doesn’t sound rare.

According to the statistics shared on the website, childhood cancer rates have been rising for the past few decades - RISING! The organization itself, the one with public funds for treatment and research, recognizes that the disease is getting worse despite improvements in mortality rates. Still it only gives less than four percent, and the American Cancer Society - the Relay people - gives less than a penny of each dollar raised through public support to childhood cancer research, according to calculations from it’s records by charity watchdog groups like the Amanda Riley Foundation. If you give $100 to ACS, 70 cents of that will be spread among 12 cancers being studied by ACS. The ACS has done good things for adult cancer, so participate if for that reason, but do not be deceived by it’s use of children in advertising designed to tug at a person’s heartstrings and pursestrings.

Children ages 0-17 make up 25 percent of our total population in the U.S., according to recent census statistics. Over 13,000 children in the United States under the age of 18 will be diagnosed with cancer
 in 2015, and 2,500 children younger than 18 years will die from the disease, from a secondary cancer inflicted by the harsh treatment, or from the treatment itself, according to the Centers for Disease Control and Children’s Oncology Group. So, thirteen thousand families will hear the word “cancer” for the first time this year. And, there are two thousand children in our country with their families at the moment you read this that will not be with their families for Christmas because childhood cancer will kill them. Where is the uprising and outrage for the deaths of two thousand innocent children? Death numbers that can be lessened, or deaths that can be prevented with more funding dedicated to cause and cure by the
 people that have the funds to dedicate, and by the people that we pay to dedicate the funds. But, there is an uprising in Athens, Alabama. There is a community here that is outraged at the deaths of two thousand children, and is taking up arms through donating time, energy, and money to promote awareness in our community and in our government. It will send a message to those with the funds that it wants funding befitting a “leading cause”. There is a community here that will work to help fill the funding gap itself when our
government falls short of its responsibility for the innocent. The support of Saturday’s event was a beautiful, collective gesture that shows we will do what we can, to do what we can. Team Victory 4 All will find its legs and with the support of our community will stand and make a difference one day in childhood cancer.

Eli’s Block Party presented by Champion Chevrolet was an overall success, and we could not be more happy with how it went. We learned a lot, no doubt. We had never dealt with vendors before, and this was our first time to have live entertainment, just for two examples. The weather had threatened all week, so I think some might have been scared off a little because we did not have as many cars as we had hoped for, and some vendors didn’t show up unexpectedly. That
 caused some holes in our layout, spread us out more than we had to be. But, it’s a best guess when preparing, and as this was our first time to be organized, our best guess is not based on experience yet. I have only had one complaint, verbalized to me at least, and it wasn’t anything I didn’t already know. I think, though, that everyone’s motivation for participating was not individual success, which promotes a positive, fun environment and makes for a successful community event. Everyone wins. We enjoyed honoring Leah Seibert, a St. Jude fighter, and lifting her up in our community as an example of grace and strength. She and her family are precious. We loved seeing the work and effort so many put into their vehicles. The cars that came were just amazing, really, unbelievable in a variety of ways. We
 had a great cross-interest of makes, models and years, something for everyone. We had over 40 vendors with a variety of wares and we had a wonderful kids activity zone that was very popular. We had great food to support the crowd for an all day stay. I am excited to grow this event both for our community, and for what it can do toward funding for childhood cancer research. Our organization is new, we have some overhead as we get going because we are from the ground up, but I am excited about our direction, the people working with me, the interest of our community, and what we can do as our part of filling the funding gap.

Please, be sure to read the following because I want to give everyone their due as best I can. I’m going to attempt to thank people who played a role in volunteering their time in organizing the event and parts of it, or who donated to the effort. I’m nervous to call names because you all know how that will go - I will forget somebody or not know about somebody that was doing something for us through someone else. But I want to make an effort because it would never have been the quality event that it was without these people. We have been working on this for months, so if I forget you, please, point it out to me because I don’t want to.

First, Team Victory 4 All’s board of directors: Wendy Yeager, Jennifer Fortenberry, and Sharma Hamm. They each bring something different to the TV4A table. Different experience, different skills, but each seems to compliment the others. I have been thrilled with how well, at least, the three kind of fit together like puzzle pieces, and then I just sort of fill in what’s missing to make it work. These ladies joined with me despite having to work with me (they were familiar and had a chance to run) and despite knowing that my own efforts might be compromised due to Eli’s treatment and change of path leaving the load to them for a while. I expressed my interest in the Eli’s car show being a major event, even the main event for us, and they did not blink even though we
knew nothing about car shows. We are all having to learn as we go about all of it, but it doesn’t seem to deter them so far. They each have their own families, their own responsibilities, interests and priorities, but I’ve been touched by their interest to own the organization and the mission. It helps me to feel like it is something they want to do for their own reasons, not just because I’ve asked them to, or that they are doing it for me. It makes us a team. Without their willingness to step out of their comfort zones, their fun attitudes and self-motivating energy, we would have never gotten off the ground. I am indebted to them personally, and if we had to close up tomorrow, I would count our experience as a success thanks to them. For the car show, we each took a part, got it done, then put the parts together. For months, they each obsessed over the car show, just as much as I did, and that meant the world to me. When I left to come to Houston, unknowing that I was actually not coming back, they did not waiver in moving forward with the event, picking up what I had to leave behind and adding it to their own plates. I just know that we are going to do good things.

Another big part of our organization is Naomi Flanagan who is heading up our online presence and data collection. An active, accessible, and professional online identity is really necessary to survive and necessary to succeed. Naomi has a giving heart that drives her and the brains to know what she’s doing or at least figure it out. She is the overachiever that we needed! She is our information administrator, managing the development of the website and the collection of information. For the car show she kept information and updates flowing through our Facebook page, she tweeted and posted to instagram for us during the show. She sent and answered emails to and from vendors and car people, handled many loose details that rose over the past few months. She helped find vendors, worked at the car show Saturday, doing whatever was needed. She has put in many volunteer hours for the success of the organization and for the success of the car show.

If you were at the car show, you know or heard Joseph Scott. Joseph was our MC for the day. I first met Joseph when the Limestone County Mustang Club put together the impromptu “Let’s show Eli our cars” show last year that drew almost 400 cars through word of mouth in two weeks. Joseph is the president of the club, and he is our car show foundation, the reason the car show had all the aspects a car show should have - since we had no idea. He drove the preparation for the car show side of the event, making sure that we had the details filled in so that the car participants had a good experience enabling us to grow into a desirable event. After months of preparing for the car show and getting it kicked off, he served as the announcer and director for the day, both behind and in front of the microphone. He has a tender heart for the cause, an appreciation and love of auto hobbies, a desire to showcase our town, and always has an upbeat, positive attitude that people respond to - all of which make him perfect for the driver’s seat of the car show.

From my experience with other events, I knew, even before we decided on any part of the show, that there was one area that I wanted pulled out as it’s own animal. I wanted it to shape into its own organization within our organization that would live beyond the car show and be useful in supporting any event we host. It would have the attention of one person to maintain it, monitor it and only that person would be responsible for the adding to and subtracting from it. No one else would touch it, keeping it clean and controlled. Though it had nothing to do with show itself, the show could not happen without it - that is the volunteer corp. I can not stress enough the importance of, not just getting volunteers, but mainly the organization and coordination of volunteers for the day and then figuring out what to do when all that you have planned goes out the window last minute. When asking for volunteers, people need to know that we value the time they are donating, and that we count them as part of the team, and a big reason that we have a successful day. I want volunteers to have a satisfying and fun experience where they know they have added to the quality of our event. I asked Robin Richter to head the volunteer corp, and I knew all along, from the time I had the idea to separate it out as more of a “department” of our organization than part of the car show, that I wanted her to do it. Dealing with volunteers runs the gamut of personalities, of work ethics, of limitations and allowances, of ages, and is just plainly a challenge that comes with dealing with people. Robin is meticulous and detail-oriented. She is dependable, self-motivated and organized. She has a servant’s heart to help and the sweet personality needed to face the broad spectrum of personalities across the table. We learned a lot with the car show in many areas, including this one, but she easily adapted our schedule and plans according to the challenges of the day. And that is exactly what I knew she would be able to do. She found ways to get done what needed to be done on the fly. I look forward to us growing that group within our organization because I think it can be fun to be part of a team.

I also want to say thank you to Lisa Bass, another Mustang Club member who helped us with the car show. She helped arrange the food trucks, which without food, ain’t nobody stayin’, am I right?! Lisa was a big part of Eli’s impromptu show last year, making it happen, and she is active with the Pediatric Brain Tumor Association. She manages a car show for PBTA and helps raise money for that charity and we are, personally, thankful for that.

TV4A was represented at the show in a couple of different ways. Angie Olree and Amanda Dycus took care of the t-shirts and stuffed animals and ran our TV4A merchandise table. They took care of separating the shirts, and then setting up the table area to sell on Saturday. They continue to deal with what was left. So, we have t-shirts that we really need to sell from the show. The are really cool. We got the really nice, thick and soft shirts, 3-color screen print, and they feature artwork by Shawn Doughty that is of Eli. We have adult and youth, $20 all of which goes to TV4A.

Ashley Dobbs collected items for a bake sale for TV4A, set up the booth and took care of all collecting all of that. And Gale Bell ran a hospitality table for the car participants for the morning hours, providing coffee and a pastry. I don’t think the car people were use to being so well taken care of and didn’t know it was for them. It’s things like that, that are going to set us a part and make us a show that people want to be in.

Sharon Hatfield took care of trying to get together goodies for the bags given to the car show entrants as part of their registration. She and some helpers visited and talked to businesses about ordering some things specifically for the show. Davis Eye Care ordered 300 koozies for us to give out, and there were a few other places that gave some things. Asking for and gathering items is tough and not fun, so I appreciated her and her team working on that.

Kelly Cain, another cancer mom who is active in the fight against childhood cancer, took on the job of honoring Leah Seibert, our Champion St. Jude patient that we featured for the day. She called many local businesses to see if they would sponsor a tent for Leah to give her and her family a nice, comfortable place for the day. Kelly took care of the canopy and provided drinks and snacks for them, and I think they had a fun time.

Matt Prater, local singer and songwriter, not only performed for us, but took care of getting the stage sponsored, set it up, and made sure he had everything he needed. He brought a full band with him, and it was super. I look forward to growing that element as part of the show because it really adds so much to it.

We appreciate our sponsors who provided us with what we needed to get it going. Joel Hamm at Champion Chevrolet has a big heart and is always ready and willing to help with whatever we need. I had some vendors not show up, which left holes in the layout, so he sent over some additional new cars to park in these spots for people to look at and it really helped fill in. Karen Berkebile at Midway Cycle in Madison always makes her place available for us as a Madison area drop-off and pick-up location for the different things we do, as does Sharma Hamm and Lauren Clardy at the Grasshopper in downtown Athens. The Grasshopper has always let us use their address as a mailing address for Eli for years now. Kasey Harbin at McClary Tire can always be counted on and always supports us in whatever we are doing, and he is just plain fun to go see. Jamie Brown at Sagamore Mortgage, and Nancy Thornton with Smokin’ Box BBQ helped us get some flyers copied so that we could distribute. And, the Athens News Courier, Decatur Daily, and WHNT Channel 19 all did stories on the show to help us spread the word.

Belinda at Domino’s on Highway 31 provided a truck and workers for the show and donated 100% of the proceeds from the day to TV4A. DeepSouth Focus, the car photographer, and Smokin’ BBQ donated a portion of their sales from the day as well. We had a great offering of food choices between Domino’s, Smokin’ Box, BrainFreeze and Suzanne’s Bakery, and we appreciate them all coming out. Food and drink makes the party, and we appreciate their effort. We had a lot of walk-ups donating to our organization, or St. Jude, or Eli and we are so grateful and humbled by the response from the community to support our effort and our family.

We are appreciative of the market vendors that took the time to prepare their wares and come out for the show. I think that element is going to grow on its own as people hear about our effort to have a well-rounded show. We learned a lot our first time with this element, and it’s just going to get better.

The Kids Zone was very popular and for good reason! We had many donate their time and effort to prepare and host an activity that was all free for kids. The groups didn’t make any money and were just there to support Eli and to help make it a great day for the community. Members of Madison Church of Christ hosted two booths, and the youth group from West Hobbs Street Church of Christ hosted two booths. The junior girl scout troop from Athens Bible School, the robotics team from Lionheart Christian Academy, Toodlebugs Children’s Boutique all hosted kids activities. The multiple blow-ups came courtesy of Jason and Margaret Hendon of ServPro in Athens on Highway 72 West, Moonbounce and Party Rentals in Athens, and Best Day Ever Waterslides and More in Toney. And, what a treat to have Queen Elsa and Princess Anna of Ice Queen Event Services roaming the grounds taking pictures and even sliding on the blow-ups. Kids could pick out wands and make potions with Harry Potter, and strike a pose with Ninja Turtle Michelangelo from Cowabunga Entertainment.

There were many individual volunteers for the day, filling in the spots that we needed for parking help, bathroom monitoring, bake sale duty, registration, ballot counting, set-up and clean-up. I will never be able to name all of them, and several stayed all day filling in at different places. I saw friends from Madison Church of Christ, from Bethel Church of Christ, from West Hobbs Street Church of Christ, from Pepper Road Church of Christ, from Athens Bible School, and from the Limestone County Mustang Club of America. As I said, above, the shows logistical success is dependent on that corp.

A special thank you to Melissa Green, my proxy when I am, ya know, off in another city fighting this cancer thing and can’t shoulder my own responsibilities at home (same song, 15th verse same as the first, into our fourth year now). She didn't help with the car show, she helped me with the car show, and there is a difference. I had been gone for two weeks leading up to the show, and just arrived in town Friday afternoon, so she helped me wrap up my end of my part of the event, plus filled in some of the holes. And, that is in addition to her girl scout troop providing an activity in the kids zone. I can’t ever repay or measure all that she does for me or our family. And, I’m not special, she always has several “project people” that she is helping in some way. There is no one like her.

I hope everyone that participated and supported us in any way to help make this event great, feels good about their participation and has some satisfaction in knowing that whatever you did added to the success of the event. Sincerely, thank you all.

We are excited about what Team Victory 4 All has the potential to do in the world of childhood cancer. There are an unthinkable number of worthy causes to support through the donation of time, money or energy. If childhood cancer is a fight you would like to join, you can support TV4A, or I would encourage you to seek out specific childhood cancer research hospitals, and funding foundations. A good example, is St. Jude Children’s Research Hospital, a non-profit hospital dedicated to childhood cancer and blood disorders. St. Jude, headquartered in Memphis, Tennessee, is a world leader among its peers, and extends its effort beyond Memphis by operating affiliates in other cities so that more children have access to specialists for accurate diagnoses and treatments. Recently, St. Jude opened its seventh affiliate in Charlotte, North Carolina - that’s donations working for children. Another way to get the most out of your donation is to give to childhood cancer foundations that support specific treatments through private funding efforts, such as Noah’s Light Foundation. This is a non-profit organization with the mission to specifically fund doctors seeking innovative treatment protocols, such as the immunotherapy treatment that Eli is participating in. Thirdly, there are foundations gaining national attention which sheds a broad awareness light on childhood cancer, like the St. Baldrick’s Foundation. It’s mission of filling the funding gap by raising awareness through national campaigns leads to funding directly for childhood cancer research.

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