Tuesday, October 11, 2016

I saw a friend that I had not seen in a while at the grocery store yesterday. She asked about Eli, and I told her that he had two tumors now growing, and that we were headed to Memphis to have a craniotomy. She said, “Wonderful!” Her brother has been fighting brain cancer for 16 years, so only another brain cancer person would understand that it is wonderful. It’s wonderful because it is an option. We arrived last night, late, and since St. Jude housing was full, we
were sent to a local hotel. Weird to be back after almost five years, and it has been a while since we have been in-patient at a hospital, too. We went through admissions at LeBonheur today, nothing exciting, really. There was a problem with his port, had to stick him a couple of times, then still not working right. So, they ended up having to stick him in the wrist with an IV, again a couple of times. So, that was pretty unfair, since he endured the port, and it broke through his stoicism and he cried. We will have an early morning, starting at 6 a.m. signing consent forms, then he will head down for sedation, and OR prep. Actual surgery is scheduled to commence at 9 or 9:30 a.m.

We had a good visit at St. Jude on Friday with our original oncologist. He seemed genuinely happy to see Eli, and it was neat being on the St. Jude campus again. Eli and Vic went to a car show on Saturday, but I had arranged for some really cool Star Wars characters to make an appearance at Josh’s house who lives a little less than an hour from us, so I darted over there to make sure it went smoothly. Josh, who is a huge Star Wars fan, you
remember is a 13-year-old who is on the same trial as Eli, but has progression at the brain stem. He is starting a new treatment with the experimental medicine this week. I am hopeful that our non-profit can start doing some things like that for local kids. If we can get the funding we need, we have some plans for next year to support local families, and I am hopeful that we will be starting something fun to put a smile on kids’ faces while they are in treatment. Then the rest of the weekend, and Monday before we left was filled with getting the house ready for me to be gone for a week (putting away laundry is what that means, and the kids just love it. I’ve got one kid that loves doing laundry so much that she puts her clean clothes in the dirty clothes instead of hanging them up just so that we have more laundry to
do… hoping that by now you recognize my sarcasm), and getting some fall shoes for a couple of kids that had outgrown shoes from last year. I’ve also wrapped up preparing supplies for another one of our own car shows being hosted by a guy in Muscle Shoals, so that I could drop that off on our way to Memphis. And, while I’m at it, we are also getting ready for a monthly Coffee 4 Cancer at Suzanne’s Bakery on the 21st, and mark December 8th on your calendar for our holiday benefit dinner.

I wanted to share this link to a news story about the trial that Eli (and Josh, and Coulter, who I’ve mentioned before, and now Madison that is featured in the article) is on in Augusta. It gives
Stickers that work with imaging to help guide the surgeon.
background, and explains it a little better than I probably have. It also talks about funding. This is exactly the type of work that I want to raise money for, so I’m looking forward to our organization growing and narrowing it’s focus, jumping in to support work in the trenches.

I know that I don’t have to ask for prayers. We are where we are because of your relentless petitions on Eli’s behalf, and I am thankful that you will again make that effort Wednesday. So, I’m going to ask for something else. When you see your child, I want you to tell him or her that you love them, and use their name. Not “I love you, Champ,” or “I love you, Princess,” and no fair
Got to meet therapy dog Annie.
grouping siblings, no “I love you, guys.” Say, clearly and directly to each face, those three words with your child’s name on Wednesday. That might seem like a request to benefit the child, and certainly, as Eli is opened up tomorrow, I will find comfort in knowing that children, all over the country, really, will have felt love during that time. But, it is more for you as a parent, so that Wednesday night, you can join me in peace as we lay our heads down to sleep with no regrets.

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