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St. Jude 3 Testing Day

Posted on June 22, 2022June 22, 2022

Today was one of those busy days…  Labs, ultrasounds, and conversations about Eggs.  Not a conversation I was thinking I would ever have in this lifetime.

Needles, Summer hates needles.  But at this point, it’s just a conversation starter with whoever is sticking her.  Today, the nice lady doing her labs gave her a “bee” that was supposed to remove the pain from the needle.  You take the battery-powered device (it’s shaped like a bumble bee) and put it above the area where you are drawing blood from.  In this case, it was on her left forearm. The bee vibrates and supposedly distracts your nerves from what is going on down below at your hand.

This was new, so Summer tried it out while the needle was inserted.

The nurse did a fine job and got the needle in quickly and with little effort.  Something that does not always happen!

When we left the room, I asked Summer if the “bee” worked.  She “No way”, she couldn’t tell what it did but she was being nice and played along!

After blood was drawn, we headed to physical therapy.  The therapist had a barrage of tests and challenges that were not easy!  Lots of word problems and memory games that I (in my sane 50-year-old mind) would have failed miserably at.  When the results were given, she scored above average for a “regular” person.  It appears that she has no damage from the previous operations in her language and thought processing facilities.  We all agreed that Grampy would have failed the word problems.

Later, she had an ultrasound and we sat down with a nurse practitioner about the collection and storage of eggs.  There are many cases where Chemotherapy can damage the body’s ability to produce eggs after treatment.  St. Jude…  Just like everything it seems…  Has an amazing program that will harvest the eggs and store them until Summer is 35 for no charge.  We had been clued into this conversation a few days ago, but it was real and personal today.

The nurse told her she has plenty of time to make the decision, but if she does go ahead with it, it will be done in those 5 weeks between Radiation and Chemo.  Stealing away 2 precious weeks that I know Summer was banking on being home with.  Talk about the tough decisions for a 20-year-old!  We talked briefly, but we have time and do not want to rush to influence her in a way she might regret.

After we were done with her last appointment, we headed to town so Summer could get a Gatorade of her choice.  She is done eating anything after 7 PM tonight.  Only clear liquids until after her MRI and Spinal Tap tomorrow.

Tomorrow is the big day.  Summer has the full spinal and brain MRI that will look at everything CARLE did.  I seriously want to hear that everything is perfect and that radiation will commence ASAP… But I also want to know that there are no question marks about what Dr. Mostafa left behind.  If they feel they can remove more material…  Then so be it.  Dr. Kajjar did say this surgery will not be as debilitating as her CARLE surgery just for the fact that she is not suffering from a total inflammation as she was before.  So, that’s the good part.  The bad part is that they will have to open up the wounds that just healed!

As I said yesterday, the spinal tap will check for contamination and loose cancer cells.  Again, pray for clean results.

Tomorrow’s procedure will be done under anesthesia and will take several hours.  Ang and I will stand by patiently.  The results of this scan will determine our schedules for next week.  No surgery…  One of us is coming home for sure to get caught up.  Surgery?  Then we are both sticking around.


Summer got a call today at about 4 PM from her housing at Carbondale.  Evolve Apartments.  They were canceling her lease.  We did not hassle them to make this happen.  We did have a conversation with SIU Cares last week, but we hope that it was Angela’s call about the Summer’s condition that changed their minds.  We are sorry Nate and Nate!  Pray that she can come back next year and we have the struggle of finding another apartment, I would welcome that problem.

Angela is going to use a chunk of the GoFundMe money to pay off Summer’s only student loan.  She has done a great job of working and paying for anything not covered by her ROTC scholarship and Academic free ride…  But as an incoming Sr. she still had nearly $8,000 in loan status.  That will be taken care of by GoFundMe.  Also, her Discover card had 700 bucks on it.  We are paying that off as well.

I made a joke early on that if we made enough money I want to get her a new car when this is all over.  A Fiat Spyder.  That would be a joke…  No kid in Carbondale should have a convertible without an armed guard watching it nightly!  But, after seeing what has been raised in the fundraiser, I hope we can do something with a car for her.  Her RAV4 is a stick shift, and I think we are done with it.  But, I am hesitant to think about when she will be able to drive any car.  So, I will worry about a vehicle when we get past radiation and see what her limits will be.  This kid will flip out without the ability to drive… So, pray she can get her eyeballs working well enough to pass a driver’s exam.

Who knows about the medical bills and deductibles…  We will cross that bridge when we get there.


This morning I was walking out of TriDelta House and saw a guy with a St. Jude hat and shirt that looked pretty good.  I stopped and asked him where he got them.  One thing led to another and I found out that his son, Ben, is 22 and is back for follow-up scans from his brain cancer a year ago.  He loaded me up with a ton of info.  First and foremost… There’s a gift shop to get your St. Jude swag.  (Got a hat later).  There is also a support group led by a social worker that is targeted at 20-year-old St. Jude patients exclusively.  They meet every Wednesday and it sounds like they play games, talk, and network with each other throughout the week.  No slight on the little kids… But it was awesome to hear that older kids could find each other and share each other’s stories and struggles.  Summer was game for it.  I think she would welcome more voices in her day that are not Mom and Dad.


Tonight, we finish off the evening with “Emeril Lagasse’s Eat the World”.  Meh…  I think we are all hungry for good food…  Friday afternoon we may go wander Memphis for some local tastes.

Related

6 thoughts on “St. Jude 3 Testing Day”

  1. Ann Anderson says:
    June 22, 2022 at 11:14 pm

    Continuing to keep you all in my thoughts & prayers.

  2. Linda L Robinson says:
    June 22, 2022 at 11:43 pm

    Hi, Honey. Aiden and I went to Pekin this morning for him to register and voting for both of us in the Primary election. Your dad’s name looked pretty impressive on Aiden’s ballot; wrong district for mine! Now home and with the usual late hour, listening to WCIC…”do not be afraid for the Lord is with us.” I wonder if the bee will be back again tomorrow for you; remember Grandma’s prayers are with you every single day. I love you.

  3. Diana valdez says:
    June 23, 2022 at 8:06 am

    This is Dawn’s niece. I am following Summer’s medical saga and believing in faith for her full recovery. My grandson Obie was in and out of hospitals and surgeries from birth as a premier for a full 9 months with heart and stomach surgeries. It was extremely difficult for my son and daughter-in-law financially and emotionally. I understand and feel your anxiousness about the future. He is 10 this year and a great blessing from God. I agree in faith with Linda , do not be afraid, the Lord is with Summer. Prayers for excellent results on the MRI and spinal tab.

  4. Lauren says:
    June 23, 2022 at 8:30 am

    I didn’t really get the chance to know Summer, as I am the new Office Support Specialist for the University Honors Program, but what I can tell is that she is an amazing human and her parents truly love her and are good ones! I have three children of my own and I can only imagine what you are feeling. I commend you on this blog and am sending love and prayers and encouragement your way.

    May everything go well today <3

  5. Diane Scott says:
    June 23, 2022 at 9:05 am

    Our thoughts and prayers are with Summer and the Stahl family. Hoping for the best outcome for Summer.
    The Scotts

  6. Dianne Beach says:
    June 23, 2022 at 11:59 am

    Eric, I am reading your updates every morning. I talked to your MOM yesterday (she was my boss at Ben Franklin’s). I am praying for Summer and for you and Angela. Julie and I were talking about how she took care of Aiden and Summer when they were little tikes. I am sending some things for Summer if she wants anything. Praying her tests come back good. Thank You so much for your updates. Even though we have not met I feel a connection because of your folks. God Bless

Comments are closed.

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