Memphis…. We are back.
This is the long awaited visit to St Jude after our epic family vacation. It’s been nearly three weeks, and I feel like everyday we have been away I can see a new symptom of Summer’s cancer. Did we wait too long? Did we go too hard? Should we have come home from the trip sooner?
A lot of those questions will be answered tomorrow.
Angela and I both went to work today and left around noon to meet up at home. Fort’s let us take a RAV4, which was handy with the wheelchair. We grabbed Summer and headed to Carbondale to pick up Nate.
Honestly, after driving an RV 5600 miles, this drive down in the RAV felt like a limousine! I found a Love’s in Sikeston that serves up a mean Chester’s Chicken so we could keep the trip fast. Even so, arrival at TriDelta (temporary housing) was around 8:30. Yawn.
Tomorrow is the full bevy of appointments. Blood tests at 7:30 and a landslide is poking and prodding afterward.
Summer is a bit grumpy and seems to be tired all the time. Today she was fighting a headache all day and it’s not lost on me that this all started with headaches. We have been trying to negotiate with her to eat over the past few days and with her memory lapses…. It becomes a cyclical conversation of “I already ate” that is reminiscent of “who’s on first” .
“I had pizza earlier” she said yesterday. Kiddo, that was two days ago.
This weekend is Bonaroo Music Festival.
I am praying for a medical miracle this week that she can get any more use out of her legs but that seems remote.
I told Chris at work today that I would drop her and Nate off at the fest on Saturday if there was a chance they could get anything out of the experience. He looked up the temp, 87 degrees. Then looked at the chance for rain and it looks like it will be wet. Nothing sounds like it’s aligning.
Again…. I am waiting till we get through appointments this week to make final calls.
We have a ramp! Saturday, I reached out to a few people who expressed interest in helping make a ramp into the house for Summer’s wheel chair.
Wow…. I got the right friends and family. Neal killed with with design. I think Gabe, Daryl and I did pretty good with acquiring materials the night before because there was very little scraps left over.
Amy brought the food to feed an army.
Thanks to George, Jake, Jason, Dan, and Andrea as well. Perfect work force!
We were able to build a second ramp inside the house that drops into the living room as well.
Vaca…. So, I did post a few updates over the past week…. But nothing too much. I limited myself to an Instagram post for each park when I went to bed. instagram is @planetstahl
Part of me wants to go back and flesh out the full story of our days on the road…. The other part says pay attention to the “now” and worry about the stories later.
Summer’s goals for the trip were mostly met. We didn’t make it to Lincoln City Oregon or Glacier National Park…. But we did get to Seattle and eat some fresh piroshkis. All the while, her medical condition was declining. Between massive drives and attending to everyone’s needs…. There was no time to bust out a laptop to review the day. (Many of you had hoped I would be too busy to post, thankfully, you were right!)
I did post two updates to GoFundMe because I know Summer does not read those! Pretty sly right? But, even those were short and sweet…. They were mostly thanking folks for helping with the vacation expenses.
I would like to give a shoutout to the Fairbury Cropsey class of 1971 for their generous donations before we left for our trip. I have had lots of thoughts about the lifetime impact my Dads short life had on so many people back in my hometown. It has given much to reflect on as we march forward with Summers diagnosis.
Oh and the Delavan Baptist Church as well. Summer comes from a split faith family. I’m raised Catholic and Angela was raised Baptist. Her St Joseph School family has been donating to St Jude. The Baptist church on Linda’s side has been soooo supportive as well.
It’s unreal and k told Mom today that I want to thank everyone…. But I will likely fail in that endeavor.
Ok… it’s late and we have appointments all day tomorrow. More news as I can put it together tomorrow.