St Jude – Tuesday afternoon

Last post was written while in the imaging waiting room. I think that was the first blog post I had written on my phone. It seemed like a better use of my time over chewing my nails!

When the results for the MRI showed up on the ap…. I asked Summer if she had looked at them. She said “nope, I remember what happened last time. I’ll wait for the Doctor”.

In the meantime, Angela had looked, and it was all good. Good is a relative term when scanning existing tumors. Nothing has changed since her last scan 2 weeks ago. Our concerns about blockage or nerve damage from “growth” were now gone.

We came into Brain Tumor Clinic to the full medical team. Katie, Lindsey and Dr Gajjar were all in the room.

The focus now is on maintaining her health and getting into a rhythm with the new meds. All three of them were there making sure Summer understood why she is taking the newly prescribed drugs and how missing a few pills can build an adverse effects.

The conversation moved onto vacation and how they all think she is good to go… But, they want her to stay one more night. one more night!?!? C’mon guys!!! We want to go now! Our three man offensive push did not enough persuasive power we hoped. These guys are all arm-locked. It’s Gajjars way or the highway.

We had a break in the action for an hour and Summer wanted to try out the “nap rooms” in the “commons” area. It was actually pretty slick. She chilled out on the sofa lounger and we all kind of talked about our plans for the week ahead. I don’t think she ever napped…. But she did relax.

Earlier, while Summer was talking with Katie about her meds…. I was cooking up a plan to get home asap. What if…. I could drive home today and use Lifeline Pilots for Summer and Angela to get home after their early appointment on Wednesday? It would save Summer the long drive and it would get me home for Aiden arriving home from college. Even with little notice, LP found a pilot out of Champaign who was willing to fly down and get the “ladies” and bring them to Peoria International.

There’s a matter of paperwork…. We filled out the application. We got the St jude airport transportation lined up. We forwarded the physicians release form.

I called Aiden and told him I should be home later tonight.

Later, we had to be back in the clinic and I had a chance to talk to Katie about the forms…. She said Doc would not sign the release. At first I thought she was kidding. But she was serious. Doctor did not want Summer flying. Argh!

Well…. That was a 7 hour drive I didn’t have to make today.

We got back to Tridelta late in the afternoon and I saw that Summer was laying down for a nap. That sounds amazing! I’ll give it a try! 2 hours later I woke up wondering what’s for dinner. I hope that was the missing sleep from the last few days.

Summer wanted noodles or pasta. But she didn’t want to eat “in”. We looked up PHO restaurants and decided that PHO takeout is not always amazing. Especially when you don’t have bowls or cutlery. We ordered Italian with a dinner from “Memphis Little Italy”. It was surprisingly”meh” Italian food. Better than Avantis is all it rated. Not a great send-off meal, but it had a reminiscence of one of our first meals in TriDelta in July. We were all sitting around the small table, making small talk and generally making fun of me. It was like old times in a sense.

Tomorrow we see clinic first thing and are completely optimistic they will have no reason to keep us. Summer will get de-accessed and we will hit the road.

Summer still has a pedicure appointment for her and Olivia Wednesday evening that she can keep. (I went though a lot of effort to seek out options over the weekend for nothing. I do know that Ms Otto knows her local salons!). We will pack the camper and make the call to leave that night for a quick launch or the next day on Thursday morning.

Oh, and Pat and Chad from Fort’s took the camper to our house today so it would be ready for us. Awesome. Thank you!

We are not on the road yet…. But we are way closer than we were on Monday.

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Oh…. Z is for Zzzzz’s. I went back by the alphabet wall today and had to brush up.