A few months ago when we were here on the 5th floor at Target House… I used to see a lot of the same families going up and down with us on the elevator as if we were all going to work. Regulars. One of the kids I remember distinctly was a young man and his grandmother. I remember him because he always said “hello” in a low-key southern way that was very distinct. I remember wondering if this slow and distinct cadence in his speech was his normal speaking style or if it was a product of his physical condition. He was very thin… Very gaunt and you could tell he was in the throws of chemotherapy in a way we had not experienced yet. I admired him but I had a bit of relief in my heart because I was not yet seeing my daughter in this condition. I frankly could not imagine Summer as frail as that young man.
Fast forward to this visit to Memphis. A lot has changed since we left Proton Treatment and have begun the Chemotherapy regimen. Summer walks delicately. She holds my arm for balance and when it looks like we have a bit of a walk… She needs a wheelchair sometimes and that is something she always refused. Her spirit and resolve are as strong as ever… But her body is fragile and we live day by day on the numbers and results of her blood tests. It’s been a gradual process… And I think you can only notice it if you step away for a few weeks as I have just done.
We still laugh and joke whenever something grabs our mutual attention at the hospital. But when it’s time to get groceries or get something away from Target House, unlike my normal travel partner of the past… She is happy to stay back and lay down while I do the running.
When I arrived, Summer was happy to go out to dinner with Nate and me. At the time… I thought it was a little strange as she had spent the previous week struggling with a lot of physical ailments up until I had gotten there. Was she suddenly better? No. I can see now that she was putting on her best face and definitely over-exerting herself to have some semblance of normal while Nate was here. Awesome. Foolish. And probably a very natural instinct that anyone of us would do if put in the same position.
I can tell this trip is going to be very subdued by standards set on previous visits. Monday, Summer knew she didn’t have an appointment until 10:30 with PT… So she slept it. I got up early-ish to make breakfast and get my coffee at the hospitality station. While I was there I ran into one of the building handymen and thanked him for fixing our ceiling fan in the bathroom. Pretty sure I talked about this on a previous post. We were leaving it on 24/7 because that was the only way it would stay quiet. If you turned it off… It would howl a bearing noise that would overpower the loudest banshees. It was a wicked noise.
I let Summer sleep and cooked breakfast with the meager amount of workable food that was left in the fridge. While Angela was here, Summer has not really left the hospital, so groceries were not a priority. I am hesitant to go buy anything without having a good feel for her chances of staying out of in-patient care.
The numbers were bad when we got the results on Monday afternoon… But they were not ready for any transfusions at that time… So we were told to come back at 6:45. That meant a few-hour break back at Target House. In the old days… WE would have found something to do between the visit and coming back. Not so anymore. Summer is quick to nap whenever and wherever there is a spot to lie down!
We ended up staying in the transfusion center till nearly 10 PM and by that time Summer was a bit frustrated that we were long past Supper. She swore it would only be an hour… I pointed out that the appointment said 180 minutes. I, unfortunately, was closer to the time estimate. I offered to take her out for a shake… She had been mentioning earlier that ice cream sounded good. But, by the time were in the car and headed back to the apartment, there was not much that could have stopped us from going straight back to her bed. I had a salad I had been saving and Summer nibbled on some Girl Scout cookies. (The coconut ones! She makes me proud!)
I ended up typing on the computer till past midnight on a work project I have rolling out. Any folks who go to Fort’s for service will see some new tech in the service lane coming up… But it’s a SUPER tough time to make that happen while I am away. I finished what I needed to have done before having a ZOOM meeting this morning with a tech installer. In the meantime… Summer slept to a ripe old time of 10:30. Once she was up, she started working on a grocery list.
Kroger is just a few blocks away from our apartment and we are definitely down on supplies. About 80 bucks later, I came back with 10 bags of weird snacks and foods that she is craving. Smoked Salmon. Prociouto and Mozzerella rolles. Cherry Chunk Ice Cream. Super Smacks Cereal and the ingredients to make tortellini and meatballs. That was what she wanted so badly last night and it was just too darn late to make it happen.
At 2 PM… Summer got online and logged into her Geography Statistics class and asked that I close her door… And make her food. God she’s demanding! I did the best I could with no produce or cheese. Summer ate 5 meatballs and about the same amount of pasta. She was happy. I will call that a win!
So, we did NOT go to St, Jude today. Crazy right? Tonight, when Angela called, she was aghast that I should have such luck after her week stuck bedside in the hospital. Tomorrow we have a similar routine. Summer has Child Life that she makes a point to visit every week. She will not miss this one because she is still traumatized that she couldn’t make it last week. She’s a regular and proud to say it.
Summer did task me with a project today. There is a printer at St. Jude that will make a “Magic the Gathering” card with any rule or picture you want on it. Summer and the Nates have played Magic for years and when she heard about this, she was eager to give it a try. After our last MRI with Dr. Gajjar… She had an image in her head that stood out. It was one of the MRI images that had a super weird outline of her eyeballs popping out of an alien x-ray body. St Jude gave her the images… But Summer and Angela both needed me to figure out how to extract them. I am needed for a few things!
Here are the choices I am going to take to the printer. Creepy? Wait till they are on a playing card!
1 thought on “St. Jude – Change of Pace”
So glad Summer has her Child Life meetings to look forward to with other kids her age, and not just meetings and appointments with the doctors, etc.
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