We got through the last 2 days with some regular appointments and there is not much to report. Summer’s counts were awesome. “Everything is in the green Dad” she proclaimed after the test results showed up in the “My Chart” app. She looked at me as if to drive home the point, and said, “That hasn’t happened in a long time!”
She was right, that looked pretty good. Regardless. We have Tuesdays and Thursdays appointments with Dr. Gajjar and he is the one that Summer has to convince if she wants to bail out of town for a long weekend. Katie, our head nurse was careful to give Summer any hope of that happening. Gajjar did come in a few minutes later. He knew what was up. The good cop/bad cop thing probably works on the little kids… But we know they talk to each other out in the hallway so that there are no surprises.
Gajjar wanted the whole game plan. What and where and who.
He agreed that Summer’s counts look good and if she wants to head home Thursday that is fine.
That has led to a whole series of “wheres and whos” with Angela. Angela wants Summer to come to Chicago so we can continue our Kristkindlmarket tradition. But, getting Summer back to Carbondale to see Geno and Nate gets really complicated after that. Which is all she really wants to do. WE NEED TO FIND NATE A CAR! He uses AMTRAC like a champ, but it still requires a lot of driving and logistics for pickups and dropoffs.
I am leaning toward letting her stay in Carbondale this weekend. Her blood pressure is still high and she gets winded walking too much. If she can’t walk to a mound… How is she going to walk to the Marshall Fields windows on Michigan Avenue?!?! That is not news Angela cares to hear and I understand that. I did tell Summer that I wanted her to think about it. But she said that she is a little sick of Dad and Mom’s time!
Ha! Understandable. Hard to deal with as a parent. But understandable.
Wednesday we have therapy appointments in the morning and an ophthalmologist appointment in the afternoon. Summer’s eyes have changed prescription since being here. I would guess it’s from a 1 million percent increase in TikTok… But what do I know? Our insurance company said, “NO, You had your glasses for the year” so as usual, St. Jude is helping out.
I WILL make that Jack White Concert on Thursday night and as a bonus… Aiden is coming down from Wisconsin to join Angela, Sandra (a longtime friend), and me at the Aragon Ballroom. I am not looking forward to a million miles of driving, but I think it will be fun. Aiden has a final on Friday or we would torture him with Christmas shopping the morning after. Maybe we can drive to Wisconsin to bother him some more?
I started a post about donations and gratitude. Especially with Delmar and others using Summer’s name in fundraising. I may complete it someday… Or it might sit for a month. Those are hard posts. I try to be thoughtful, but it’s far easier to write off the cuff like this.
See you this weekend in Illinois!
Thanks for the cards and gifts that come into Target House. Summer loves trinkets and little things. Thank God, because her room is packed to the gills. One item I brought down to St. Jude was a gift from a customer. Everyone knows I pick up Hotwheels for Analisa to hand out at the front desk when little kids are at the Dealership. Cars are still a buck and a great way to get kids to love coming to the store. One of my longtime service customers, David, a fellow NERD, had a Toyota Tacoma Hotwheels custom painted and lifted for her. I gave it to her when I arrived at Thanksgiving. She said… “It’s actually pretty cool”. It now adorns our little desk area in Target House. Check it out below. Its just cool… I am not here to show off or anything. I just want to point out that its part of that gratitude thing.
Mail call is a big thing around here too… A postcard. A card. A text from someone close enough to know her number. Little thoughts mean so much to all of us when we are going through the constant monotony of ongoing medical care.
Especially to a young lady who is looking at 6 more months in Memphis away from her known world.
Summer, your Meow socks are adorable! Your “My Chart” news is great, and your Dr. Gajjar, too. Love you!!!
We pray for you every night Summer! May you feel His presence and peace!
Sounds like a better week for you! Made my heart happy to hear you get to get away from the medical world for a few days! Enjoy….you earned it! Woohoo!!
I know you still have a long road ahead, but sounds like you are making great progress. Hope you have a great visit with everyone. We continue to pray for you
Still praying here for you Summer. Have fun seeing Nate. Good to hear you get to leave for awhile. We know we won’t be seeing you for Christmas but you’re in our ❤️
Summer: So happy for your news and being able to leave! After all the transfusions, finally being able to go see Nate and your kitty. I hope you have a great time away. Thanks to your Dad also for all his updates.
So glad things are going your way for the weekend…just go at the pace your body is telling you..Happy that your Christmas is going to be Merry and Bright with family and friends..love you much and tons of prayers always!!!Chris B.