I have had a few comments from folks offline asking what’s up with the lack of updates. I have not been trying to keep things on the down low or elusive. It’s been a bit hectic here in Illinois. I won’t blog at work, and the nights have been busy… Even without Walking Dead. yeah, I finished the season last week
First and foremost… Thanks to all the folks who reached out after the last post. I was not screaming for attention with the final bits of that post. Like I told our friend Sandra… This is why I blog. So I can share and work out feelings as they happen. I have kept this blog for over 20 years… But, fortunately for me and everyone else… It has been mostly posted about renovations and interesting moments in parenting. I started writing a bit when I left Miami eons ago as a way to keep my sanity. It generally worked… And I used this format in the early days of the World Wide Web with the Frontpage website I set up on planetstahl.com. I posted a link to an old page that was stored on archive.org last week in a Facebook post. Its been wild to think about how far this has come along.
I am blessed to have so many friends and family. Sandra offered to let me hang out with her and Bill… My friend Billie and Deb both told me this week that they would be happy to help in any way possible. Dad came by the house and knocked out some dishes I had left in my sink (Darn you Hello Fresh!). Libbie gave me door-to-door service when Timmy needed spaying.
You are all amazing. I know I have support. Don’t worry about me. Seriously. I am fine and will hold myself together through a hell storm for the right reasons. I only worry about my kid in Memphis and whatever I can do to make her happy and hopeful. You’re all awesome to help with that.
This week in Memphis has been a bit of a drag for Summer. She has been fighting to keep her weight at a level that keeps her nutritionists and doctors happy. This has been ongoing since Chemo started. When I was there 2 weeks ago the nutritionist said they were content that she had been holding at a constant. At the rate, she was going… She could be trusted to feed herself and hold a decent weight without intervention. It was a high-five moment for Summer and I after the specialist left the room.
Some of that has changed since I left. As expected… After the major Chemo treatments, the appetite problems have come back. Midweek… Angela called me and said that her weight and appetite are failing. Summer has lost 1/4 of her weight since checking into St. Jude. She had a few pounds to give when coming in the door (Doc said that was good) but we are now getting to a point where they want her to maintain. The “A” scheduled treatments started affecting Summer’s throat and it’s gotten to some new lows. Summer cannot hold down anything in her stomach. It’s been constant nausea and vomiting over the past few days. She said that her throat always feels like it has food stuck in it as well. Angela was doing a medicine inventory while trying to figure out everything Summer was using to keep her stomach in check… At this time… She is on 15 drugs at any given moment.
This is all building up to the dreaded phrase “feeding tube”. Ang was lamenting this when I talked to her earlier in the week. We have avoided the hose of food since Summer was at CARLE post-op. She told us back then that the insertion of the feeding tube was one of the worst feelings of her life. We have used this confession as a motivation to NEVER need a feeding tube again. The doc’s said we need to plan on this contingency and I could tell that Summer was happier about it than Mom.
Summer said “at least I will stop being hungry” when I pressed her about it. We talked about her friends and all the other kids we see with feeling tubes at St. Jude. “The chances of me getting through this without a feeding tube were slim to none” (I paraphrase) was Summer’s thought on the upcoming crisis.
All that really mattered this week to my kid were the chances that she could go home to Carbondale to see Geno and Nate on Friday. All week long Summer has been bouncing back and forth between 8 and 15% chances. I knew the chances were getting long, but a little hope, even at her 9.87% odds, was enough to keep her motivated for another week.
This morning, she texted me and said 0%. I was said for her. A bit later I talked to Ang. She said that Summer was getting 4 more transfusions today and more blood tests would happen on Saturday. That means, no weekend away.
The transfusions were getting to Angela today. She was a bit cranky when Summer had her results at 11:30 and was then scheduled for transfusions later in the afternoon. They have to thaw the blood and platelets for an hour before the transfusion… So, that means a couple of new pints of blood and platelets can take several hours after more tests, etc. When I called them tonight, they were just getting settled in at 9:30. I know firsthand how long those days can feel.
I told Ang that I might not make it down till Saturday and I could tell this was a letdown. I will do what I can to leave on Friday afternoon… It all depends on work and weather etc.
Thanks to the folks who got Summer some Smoothie King. She was quick to enjoy some before her throat went south.
I am sharing a picture of my college student child doing her ZOOM class in Geography Statistics this week. Angela, St Jude, and SIU Carbondale got it all worked out so that Summer can keep her scholarships and take a class remotely.
I found the picture a bit of a reality check. Summer is on the bed in her SIUC jacket with a Smoothie King shakes in the background. She’s staring at her laptop while she has the green “fluid bag” within reach if needed.
What’s worse than Cancer? Taking college courses while you have Cancer? I felt a bit ugly and cruel when I saw the picture and thought about her week. When I talked to Angela about it she said that Summer was telling doctors and nurses that she is currently in college. There is a bit of identity restored by taking this one class. Not to mention… This might save her from scrolling on TikTok for 20 hours a day.
We can assume 1 hour of screen time is now educational.