Anyone following along with my Facebook saw my sad goodbye as Summer and Angela drove down our driveway headed to Memphis on Sunday. It was a sad ending to our 5-week break between treatments.
I will tell you that the five weeks seemed like an eternity. For me anyway. Summer might tell the story differently.
I was making small talk with her before she left on Sunday… Even though I know I will see her in two weeks when it’s my rotation… I was having a hard time keeping my emotions in check. I was fully content to let this break go on as long as possible.
Heading back to St. Jude after a big break like this is like starting from square one in some ways. Angela and Summer had to go back to the temporary housing at Tri-Delta House upon arrival in Memphis. Our last room at TriDelta was a suite that allowed for me to sleep (and snore) on a sofa bed while they slept in the room with 2 queens. This time, I am not sure if it’s because I am not on the reservation, they were put in a smaller room. So small that I am told my group texting with Stegers and Redells this morning at 6:30 AM was quite a distraction!
Before checking into the hospital Summer had to take a COVID swab test and she will run through a battery of tests before they get into her next treatments. Wednesday, she is scheduled for another spinal tap and MRI to see if anything is going on that we need to be worried about. This is where “scanxiety” comes in. You pray for great results at every scan, but you sit on the edge of your seat for results after each test.
The port that St Jude installed during Summers last stint needed to be cleaned out today… Apparently, that was the drama of the Monday. A day that was supposed to end at 2PM ended up getting backed up in all directions after the port cleaning and this meant that the girls left St. Jude at 5:15 or so. I called them around 6:30ish (I was doing political signs) to see how day 1 went… Angela asked me to tell Summer to eat dinner. Summer asked me to tell Mom to stop watching Hallmark Channel. So… We are starting off where we left off two months ago!
I believe… and it’s a loose belief based on conversations with the doctors a lifetime ago (or 6 weeks)… That Summer will be admitted into “in patient” chemotherapy this week. This will mean that Summer will check in to St. Jude and stay there overnight a few nights (?) while Angeal sleeps in the room with her. It’s going to be a tough few days of bad sleep for everyone. It reminds me of those long nights at CARLE. I hope this section of treatment is over VERY soon.
I have had some people ask about the financials… We have some bright spots.
CARLE waived Summer’s bill beyond what our insurance would not pay. I believe it’s because of a program based on the ability to pay. Last year we made a last-second decision to let Summer and Aiden file their own taxes as individuals (Mostly for college financing etc). This decision probably saved us buckets and buckets of out-of-pocket expenses.
The Helicopter ride, I believe was $45,000, was all paid for by Health Alliance.
We paid off Summer’s credit card and Air Force Loan. I think we still have another small loan outstanding, but will wait and see if Joe Biden is paying that.
Summer did get State of Illinois food aid and she is the worst person to get money for food. She won’t eat! I did eat some of her cinnamon popcorn chips while she was home. There was something oddly satisfying about eating and enjoying the food I have been paying for my whole adult life. I think she is on Medicaid for any expenses but in reality, St. Jude has her 100% covered for treatment expenses right now.
Since we have hit our personal 10K deductibles for the year… I was told by Angela I need to get my “rear in the clear” and it might be a good time to get my shoulders checked out. So, I went ot Tremont Medical Clinic and had an initial consult. Lots to talk about on that visit… But I will save it for face to face conversations!
Angela has days saved up for her stays in Memphis initially. Fort’s Toyota has been nothing but generous in letting me work remotely while in Memphis… So, I think we will hold our income at a normal level till the end of the year. Early 2023 and the spring will be the drag. Fortunately, the GoFundMe and private donations have taken the sting off this.
I still dream that when treatment is over we will plan an epic Summer vaca and then get Summer registered and set up for her last semester at Carbondale (Fall 2023). I told her I was going to sell her old RAV4 and she told me that was not happening! But, she did confide that her next car was going to be automatic. I was a little sad because I was sure this was because of some physical failing she was not telling me about… No. She wants an automatic because her boyfriend and roommates cannot get her anywhere if she gets sick since none of them can drive a manual!!! She doesn’t want to be stranded!
As a parent… I’m torn, but my normal response to any of her requests has been “Whatever you want”. She’s entitled to that response for a while.
Speaking of “Whatever you want”. We got Summer a new iPad since the ancient one of mine could not support HBO. I mention this because she will be spending a lot of time curled up in bed looking at that iPad. If you have iTunes gift cards you are not using or want to send her a gift… Itunes is probably a safe bet. She will be pretty low-key and has said that aps and movie rentals will be her little splurges.
I will have an address posted as soon as Target House accepts them.
1 thought on “St. Jude – They’re back…”
Hi, honey. Hallmark movies for Mom and favorite munchies (chocolate?) for you sounds like a good way to end a long day. Miss you and Love you lots!!!
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