Thursday, September 1, 2016

September is childhood cancer month! I hope that you can find a way to support some kind of effort benefiting childhood cancer, whether it be with you time, or money, or prayers. Of course, I am a fan of a little non-profit called Team Victory 4 All that will soon be changing its
name to Eli's Block Party Foundation with the plan of sniffing out innovative research into the cause and cure of childhood brain cancers. But, sadly, there are many worthy causes in the very wide and diverse world of childhood cancer that benefit children in different ways, so choose what speaks to you this month (any month, but especially this month) and help support childhood cancer.

I am late in posting this mostly because I wanted to write something worthy of the event, and how we felt about being a part of it, so I have felt lost for words…. I know!!! But, also we’ve had some “fires” with our fundraiser coming up, and since i was gone to Georgia last week, I had to catch up, and work on the “fires”. So, they are beating me to posting about it!

Eli was honored recently with an invitation to address law enforcement officers at the 26th annual
The donation to St. Jude.
Motor Vehicle Criminal Interdiction conference in Nashville at the Opryland Hotel. There were about 800 in attendance, representing 32 states, plus Canada (yes, Mounties!) and he walked on stage like a
 boss. He was the personal guest of the Louisiana State Police, and Sgt. Lanny Bergeron, with special attention from the Ohio State Highway Patrol, and the Texas Highway Patrol bearing gifts of diecast vehicles, and by the end of the day, special attention from agencies of the remaining 29 states and Mounties. We were able to also meet Texas Trooper Richard Jankovsky, whose 15-year-old daughter Kaitlyn is fighting leukemia. He brought Eli a bag full of fun stuff.

LSP, and several law enforcement agencies have been long-time supporters of St. Jude Children’s Research Hospital, and asked Eli to attend as a representative. I remember seeing the LSP group on
Lanny and Amy our handlers.
campus at one of our check-ups, I think maybe December 2012. Eli
The MVCI officers
was sworn in as a Louisiana State Police officer with an invitation to attend the academy when he turns 18 years old. That is a very exciting dream for more reasons than one.

It was a great honor for all of us to attend, and a moving and most memorable experience to feel the brotherhood of the agencies. Eli
Richard from Texas, and cancer dad.
proudly wore a replica of an LSP uniform, complete with an official hat, belt, cuffs, badge, bars, and pins. The shirt was made by my aunt, Stella, and Rita Behel, and the pants by local seamstress Scottie Reed. He had such confidence in the uniform, and so much enjoyed wearing it, and having the attention for it. The officers seemed excited to see him in uniform as well. In addition to all the pictures with officers, a group of hispanic tourists stopped him for a picture. Not sure what all they were saying, but they seemed
Tennessee Troopers hosted the conference.
impressed, too! He informed me that Troopers don’t smile in pictures, so I think he might have gotten away with something there, because all the other guys he got pictures with were smiling big!

Our hotel room was wonderful, and we enjoyed the hotel atmosphere on a non- Lads to Leaders weekend! The boys, of course, were eager to get over to the Lego store at Opry Mills, and eat at the
Gifts from Ohio State Troopers.
Rain Forest Cafe.

The conference lasted until Wednesday, I think, but we had to get back for Vic to work, and Caleb for school. You may have seen Lanny’s post about the donation of 10k collected for St. Jude in Eli’s name from the convention attendees. What an incredibly generous gesture, and we are humbled, and grateful for their charitable hearts that choose to support childhood cancer. We are so thankful for the good that comes out of our journey. It does more than give money to St. Jude, it is comforting for us in some way to see how God can take this evil we have been inflicted with, and turn it into good for so many. Good for children with childhood cancer, and good for the officers that received the gift of
New puppy Sadie.
giving. Giving of time or money is always a win-win, always.

Eli did very well with his speech. Go here for the video, and a copy of the text. He spoke the slowest, and most clear than he has in the past, except the light on stage was glaring, so he lifted the notebook up so that he could read more clearly, and it blocked his face, and scrubbed on the microphone. Things like that, I don’t know if he will ever notice. He just reads it, but to me at this point and maybe always, the messenger and message is bigger than presentation. They were able to show the speech on screens, and that helps, too. Several things box me in when writing a speech for him, like he runs out of breath, and he can’t say big words, but the good thing is that it keeps the
ideas simple and straight forward, and more appropriate as a message from him. It was overall just a wonderful experience, and a nice distraction from our recent trip to Augusta.

We talked more with Dr. Johnson about the tumor in question from this last scan. Nothing really new, except that they want to suspect movement on the June scan which would have hidden it and made it seem like it was gone, so then on this scan when it shows up, it looks like growth. So, if that would be true, then it would not be growth on this scan. But, I don’t know, that seems like wishful thinking because Eli is a step behind Coulter who also recently had a questionable MRI, and his latest scan did show that he had growth (this would be the same as Eli’s next scan in a month). My heart breaks for them, as they forge a completely new path, an unprecedented effort by the doctors to formulate a creative and customized plan.

Eli had routine scans at end of August, and we have mixed news from that. Only counting 6 tumor sites now (so down from nine last scan), and then one that was gone at the last scan is back with some leptomeningeal spread off it. Can't know if the detection of it is inflammation from the treatment working and now showing up, or true tumor growth, or if he moved in the June scan which would hide it in June, making us think it has grown back. We will scan in a month for changes.

We had a lengthy telephone meeting with Dr. Johnson about the scan, and what we will immediately move to if it has grown more in this next month. He sent the scans to their neurosurgeon (whom has an impressive resume, but we don't know him) and, at our request, to our original neurosurgeon in Memphis, who we believe is one of the most brilliant there is in pediatric neurosurgery. He is very conservative, does not have the “God Complex” that plagues some, so I felt like we would get a true opinion on whether the tumor was resectable. And, he says it is, and that he could get all of it. If this tumor grows more in a month, and the others do not, this will be our plan pretty quickly after that scan September 24th to 26th. Then Eli will have another radiation hit to just the tumor bed with a machine called The Edge, which will pinpoint that area, with minimal damage to surrounding healthy tissue. There are unthinkable risks to brain surgery. We've had a few, and really don't want to temp fate, but we are hopeful to have an option if it is growing, and the others are not. Some issues like, what if this is just the first one growing back, what if the others that we shrinking also start growing, or what if next month the others are growing, too. Obviously, if that happens, surgery is even off the table, and we are headed to the front line of the Pioneer Brigade with Coulter.

Eli seems to feel good, and he went to school all day today. I sometimes study him and am in awe of the contrast between what is happening inside, and what he looks like outside at this point. I am so thankful for the useful tool of denial, supported by that outward appearance. I could not get through the day if I was not so masterful at denial.

In other exciting news, and another reason why we have been so busy is that we took possession of our first dog on Saturday. An eight-week-old Yorkie-Poo that the kids named Sadie. She is no doubt cute, cute, cute, but she brings with her all things puppy. The potty-training is chaotic, inconsistent, and not working, and she cries and yelps if she is in her pen without somebody….all night. The girls have been very good to take on the responsibility of everything, with a few moments that I will call “experience light bulbs”. Ya know, those things that you can tell them until you are blue in the face, but they won’t believe you until they experience it. I have preached puppydom to them for months, as have others without persuasion against it, so they signed up for it. I’ve gotten Abbey up several mornings about 6 to take care of her, and Abbey doesn’t have to get up to go to school any more because she does the online thing. “Why so early, you’re up, why can’t you do it?” Not my dog big ‘un. And Wednesday night, when Abbey was gone, Sadie needed attention both to play with, and to clean up a mess, so I told Hg to get on it. And she was very flustered and said, “Mama, I’ve got a biology test, a math test, and it’s church night. I just do not have time for this!” I hate it for you big girl, not my dog. Eli has really enjoyed having her around. He loves cute things like puppies, and babies. Who doesn’t?!  He will sit in the floor while she plays around him, and let her crawl on his lap.

We managed to squeeze in a car show, too, that was hosted by the school of one our local cancer buddies.

We are crunch time for our big fundraiser Superhero Day on the 10th, and it is very hectic right now trying to pull that off with some additions, and changes. So, not sure how much I will be posting until that is over. Unless it is connected to Superhero Day, I’ve put everything, everywhere on hold until that is over. The kids, and Vic, too, probably, are tired of me saying “I’m not doing anything like that until after Superhero Day,” “I’m not dealing with it until after Superhero Day.” We are hoping for a beach trip before Eli’s scan, so we still have the luxury of some denial and of the unknown to help us relax and enjoy it on a lighter level.

Please, remember Coulter and his family. He is eight. They are from College Station, Texas, and have been in Augusta I guess about a year, maybe a little less, and have made such good friends there, and love the care Coulter is receiving so much that they are moving to Augusta. Pray that this new treatment is affective for him, and that they have a smooth commitment to become Augustians.

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