I looked back and wanted to see if I had made some posts about the last “Days of Remembrance” we went to in 2024… I did. Apparently, I wrote about both days. That makes a lot of sense, as it was our first visit back to the Memphis campus since Summer was rushed to hospice in an ambulance. I don’t remember my feelings from 2 years ago, other than I was glad to visit with other parents who reminded me that other people deal with this trauma as well. 
This year, the event was held at the Memphis campus… In the Marlo Thomas building. This is the same building that Summer and I found ourselves wandering around when construction had us park the car far away from the entrance… Dr. Gajar found Summer and me looking around at life behind the curtain at St Jude. (It was very pleasant, they had their own Starbucks!). He showed us the way to the clinic, and we were back in our familiar surroundings.
The event was very similar to our last visit, but the 80+ storyboards and groups of families were much more confined in this space. The Convention Center was much bigger and allowed for more room to breathe. I am not sure that was better… I think when you are forcing people to talk and share… Closer is better. It did make it hard to admire the personalized storyboards, but that is a tradeoff, I guess.
This will be our last visit to St Jude Memphis for the time being. The organization is changing it up a little and has dropped the event for parents with children who have died in the past three years. Since 2025 did not have an event, and they moved up to 2026, we are now done. (You never know, we might be there again, but nothing in the foreseeable future)
Last year I sat next to a Dad, Chuy. We had the dumb luck to sit next to each other, and our personalities at the round table could not have been more different. He was silent… I was asking questions of the moderator and hoping to leave with something tangible. Later on, I ran into Chuy and his Wife… She and Angela hit it off… And we spent the whole afternoon and evening hanging out and talking. It was great. (I just texted him while writing this).
As successful as that encounter with the Solis family was last year… I didn’t really get that connection with anyone else this year. I sat in a group of Dad’s that became overpowered, and the moderator didn’t really have any control. It wasnt their fault… They obviously had not been able to talk to anyone about their trauma and life since the passing… So, this meeting gave them 90 minutes to gush with all the details of their kids’ treatment… Airline flights, the kinds of dogs they have, and how their loved ones had passed those animals on. The moderators are volunteers and are ill-equipped to deal with suddenly motivated Fathers who have suddenly found a voice. As you might imagine, I tried to throw a few softballs out for the other members to jump in, but after 2 or 3 attempts, I sat back and let the conversation take its course.
(If anyone is reading this at St Jude… Do the breakout groups as soon as possible on Day 1 so that parents get to know SOMEONE and can have some friendly conversations with others… Not feel like they are all on the same train with strangers for a day.)
Angela made a great contact with the family next to us. Their daughter was a teenager when she passed. (I write this without her help, and I cannot remember the girl’s name!) She was hands-on artsy, and sounded like a younger version of Summer. They had a lot of her crafts on display, and that was an easy conversation point for Angela to jump in on. I was glad for it. Phone numbers were exchanged.
We also ran into the Suttons. Their daughter, Tessa, was at St Jude and the Owens Hospice in Peoria weeks before Summer. I told them that I was watching their battle as our raged and they did give me some guidance just by what I was seeing on their Facebook. They told us their foundation still donates to the Richard Owens Hospice, and it just gave me a hint to Google Team Tessa.
https://www.tessasuttonfoundation.org/
There you go, just looked at the website, what an awesome thing they are doing.
We also had a chance to talk to the parents of Omar Cisneros. He was from Pekin and is one of the handful of families that I took note of last year because of our shared geographic location. This year we met the whole family. They live near Fort’s and are the nicest people. I hope we see each other again.
It crossed my mind that we should have a group for the Peoria area Dad’s want to get together to talk. Maybe there is one already?
A few more things that stick out… 
Water bottles can trigger PTSD. I held a bottle of water that said “Kay Cafe” in my hand, and a bum rush of feelings hit me. This bottle is synonymous with treatment at St Jude. I didn’t enjoy seeing or holding the bottle. It was very weird.
“Pa” Fisher, a volunteer, came by and talked with us. He is the nicest man and I remember him vividly from our time at St Jude. He is a 100% volunteer and always visits with all the children in the hospital. Summer was leery of this “old guy” (His words, not mine) who would stick his nose in her business… But she came to appreciate his steady and calm demeanor, especially on the days when she was physically in the dumps. I have memories of those days when she was in intestinal pain with C-Diff and stayed curled up in her hospital bed. Pa would talk to her and give her comfort. Without knowing it, he is working his way to Sainthood.
At this point in my life, I have pondered the motivation to volunteer like this… But it seems impossible to step off the rollercoaster I already have in motion.
Heather from Teen Life talked about all the influence Summer had on the program. I was so happy to see her; she was a constant source of joy for Sumer at St. Jude.
Lastly… We had a young lady come up to us at our board… She was wearing a staff badge, and her eyes were already bleary when she came up to us. She was Summer’s speech pathologist. I met her once… I guarantee that is all. Summer wanted to get through treatment, and she wanted to do it herself. When we would get to the PT area for her sessions with the various clinicians, Summer would leave us in the waiting room while she met with them. She was over 18… She wanted to be independent… She was in the best place for treatment… I am not going to second guess anytihng.
(I cannot remember her name and just googled the Hell out of that department and cannot find her.) She went on to tell us how much her time with Summer meant. She was sad to hear that summer had passed and hoped that we would be there and asked about Nate and Geno the Cat. It was one of my favorite interactions and meant a lot to us.
Well, that was almost last.
I had one more interaction that had tears running down my face, and if you are reading this far, you are probably hardened to all of this… So, hang on.
We had only had our memory board up for a few minutes when one of the chaplains came by. There are a few, and a Priest who saw the kids, but Chaplain Elizabeth was the most important one for me. She was a steady voice of calm from a higher power standpoint. We spend so much time talking to Doctors during treatment, but our “meaning” sometimes gets lost during these technical discussions. Chaplains bring back the “why”. Wednesday, May 24, 2023, before we rushed off to Illinois and started our final roadtrip with Summer… She had the opportunity to sit in the new chapel in the family commons with Chaplain Elizabeth. For a building/facility that is the center of a storm for so many families, the chapel is a serene and quiet place that will slow you down, and you instantly recognize its power. I remember that Summer and Chaplain met for about 30 minutes. This is because we were literally waiting on Summer to get in the car and scram to Illinois.
I didn’t think I would ever get a chance to ask what they talked about on that day. So I took this opportunity and built up the gumption while standing at our board on Friday morning.
Elizabeth didn’t take long to bring up the memory. She remembered that day.
“She was not angry that she was going to die.”
“She was very calm.”
“I remember her saying, “I’m not going to be able to do all the things I want to do.”
That was it for me. I was choking up… I could have asked more questions, but my mind and body were not cooperating. My mind and body aren’t cooperating as I write this. God bless those people who are on the frontlines with the kids. I don’t know how they do it.
So, even with lots more to say about our time with Mom and Dad and exploring Memphis, I think I will just shut down this post.
Do the things you want to do.
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