Friday, December 14, 2012

I'm so glad he will put the video game down sometimes.
We’ve been cramming roses up our noses these last couple of weeks as we were locked into a collision course on the calendar with Eli’s first post-treatment scan for brain cancer. The scan is today, December 14, but we had many peripheral appointments beforehand, so he and I pulled out late afternoon Tuesday headed to the 4th Chickasaw Bluff on which sits the 20th largest city in the United States.  Named after the ancient capital of Egypt, Memphis has what most cities have and that’s the good, the bad, and the ugly, and some pretty stuff, too. The Grizzlies House, a hotel on the St. Jude campus sponsored by the NBA team Memphis Grizzlies, was full by the time we got here Tuesday, so we were sent to nearby Crowne Plaza on St. Jude’s dime. We always cross our fingers for a downtown view of The Pyramid and the Hernando de Soto Bridge which connects West Memphis, Arkansas and Memphis, Tennessee via Interstate 40.
It doesn't matter where we go, he will always find a way to
play with is cars and watch TV. This is in the hotel.

 The Pyramid, the design of which I read is a shout-out to the city’s namesake, has been an entertainment venue for sporting events and concerts, but in August of 2013 it will open its doors as the largest Bass Pro Shops Superstore in the country. Rumor is that it will even have a roller coaster inside. That’s what the doorman at the Plaza said, and these guys know these things. I’m guessing the interest of Bass Pro Shops in The Pyramid has more to do with the location on the Mississippi River and its catfish and bass fishing than with it being shaped like a pyramid. I’m also betting the company got a pretty sweet deal from the city for leasing the abandoned white elephant in the cityscape.
Thursday, we were asked to check out of the Plaza and relocate back to the Grizzlies, so we are there tonight. We had decided a while back that Vic and the kids would come for Friday so that we can all be together to get the news. They arrived late tonight at the cabin campground where we stayed during the summer.
The kids and Vic leaving to come to Memphis. I am not a
happy mother hen when my chicks are all spread out.

Eli and I begin at 800 hours with triage and other prep work. The MRI will begin at 945 hours, with a lumbar puncture also scheduled while he is under. After sedation recovery, about noon he will have his shunt valve reprogrammed because it is a magnet and the MRI machine knocks it off its setting. So, our nurse has a little magic wand she uses to digitally readjust it back to the correct setting. It takes seconds, and he doesn’t feel it. I think that little tool should be showcased in medical history.
His appointments so far this week have been benign, but busy. The endocrinologist basically said she wants to just watch him, but that so far he has no endocrine deficiencies. We expect this to change over time and for him to need some kind of hormone therapy. 
Just passing the time, waiting our turn.
The psych lady basically said he was on the low end of the average range for everything, with significant lag in Math. He is also showing some focus issues, but since he is so laidback she said it was hard to pick up on. Overall, pretty benign except for the Math. The dentist said he has a cavity brewing and he may need surgery on his jaw at some point because of his severe underbite. I can only reply with a sarcastic “yay’ to that. His audiology check up is the very last thing Friday. He had blood drawn Wednesday sans hickman line that was removed in October, and he took it well. I think because Caleb didn’t flinch when he was stuck. Eli didn’t want to look like a baby compared to his little brother, so he didn’t flinch either. His chemistries are all in the normal range.
When we were at the endocrinologist, the doctor began her physical exam of him, and she asked me, “Is he always this color?” It was so funny because eli is very orange right now because of all the carrot juice he is drinking from the juicing.
Eli helping make our first batch of carrot
and apple juice.
Yes! I put a big checkmark on the juicer, finally letting it intimidate me no more. We even brought it to Memphis with us, but it is a challenge to use it in a hotel room. I am still such a baby at it, but we believe the natural regiment with the supplements we were prescribed is going to be a significant factor in his healing. It just makes sense that his body needs healthy fuel to work or do its job, which is to basically bring itself back from the brink of being poisoned to a healthy state. I just don’t see how it could work very efficiently or successfully without the right kind of sources to pull from. We will not be perfect at it because that is just not how I roll, but I don’t see how we could not try. He did have an appointment last week with Dr. Rawdon, the homeopathic doctor, that went well. Eli had improved on the number of “impurities” in his body, and his ph balance was better. We still have work to do, but we are on the right track with it. So, leading up to tomorrow, I have had my checkmark stamp cocked, loaded and firing for the last couple of weeks as the pressure of this day has been building. My iPhone calendar looks like something that ate a bunch of dots puked on it as each day is decorated with a little dot to indicate that there is something happening on that day with which someone in our family is involved. After the 14th, no puking of dots on the calendar. All we have, all our chips, ride on Friday; there is no need to really plan much beyond tomorrow yet.
Hg and I were given a chance to meet Condi
Rice. That is her in the background. They
wouldn' t let us take our own pictures.
So, at home I’ve been trying to get in as much as I can with all the kids because there is the potential of Eli and me being torn away from the family again. Then I concentrated on getting the house in order within the limits of the latter objective, because there is the potential of relying on friends for the running of our household if Eli and I are torn away again. So, Jill came over this past week to help with laundry, and Melissa has been with me several days cleaning out and putting up (yes, I am still unpacking from when we moved back from Memphis in September). One day she and I were in a transition moment with the mess at home, needing to pick the next project or chore to tackle and she said, “Well, you tell me what you want us to do. I want to help you get to that happy place.” I don’t know that I have ever gotten to a happy place, but I do pass through occasionally. I know that after Dr. Robinson says, “He looks good, it all came back clear” it will only take about two seconds for my brain to think, “The next scan will be in March.” I learned a new word from Parents of Kids with Medulloblastoma on Facebook, and the word is “Scanxiety.” I don’t think I have to define it. I have been pretty calm and confident so far, I think, however, tonight I can feel a subtle knot in the pit of my stomach threatening to grow. Thank you for helping me spread the word about tomorrow so our petition for healing is loud and clear in Heaven. It is such a source of comfort to us knowing that he is being lifted up. I will post something as soon as I am able. Have your prayer of thanksgiving ready.

Abbey and her girl scout buddies having fun
before carolling to a group of widows.

Hg and friend Sophie working on the girl scout
float for the Christmas parade.

Tailgating at the Christmas parade waiting for Hg to come by.
Hg in the center of the girl scouts float.


Big checkmark!


Another big checkmark!












The kids at Bett's house making ornaments for her tree.

No big suprise what his ornament is to paint.
The kids love to use the chalk at Bett's house.
Mostly, they outline each other, then have fun
jumping around and stomping on each other's
bodies, then drawing "X's" for their eyes, like
they are dead. Christmas fun!
We brought some candy for the nurses, and some of the
offices at St. Jude, plus some chocolate Santa's for kids. I
am also handing out the Starbucks gc's and cards to parents.

We delivered these boxes of stress toys from Northrup-Grumman.
I have a feeling there will be a lot of strong forearms around St. Jude.
We've seen celebrities at St Jude, but Eli will
always prefer and be more eager to meet a hero
in uniform, including the working man UPS or FedEx
guy. And, not to burst their bubbles, too much,
but for the most part it is because he knows
what all of you guys drive. These two heroes are
members of the Lousiana State Troopers. There
was a group of them visiting. We had missed
the formal meet and greet, but caught these two
at the gift shop. They gave Eli, and I'm sure all of
the kids, very generous Walmart gift cards for Christmas.

2 comments:

  1. Sending up prayers for Eli's scan today. Hoping you get good news, I can't begin to imagine what you are going through.

    When I walked through St Jude on my hospital tour it brought tears to my eyes. Seeing the sick kids and the families who are clearly exhausted and trying to hold it together. Yet, it seems like such a place of hope too.

    I dropped off a bunch of Christmas cards for the kids when I was there for the marathon - but what a great idea to do cards/gift cards for the parents. If I had planned ahead more, I thought it would have been nice to do some sort of card for all doctors/staff but I ran out of time.

    I love that Northrup-Grumman donated the stress toys. My dad works for them in Huntsville, I will have to ask if he knew they did that.

    Sorry this comment is so long... but most importantly know I am sending your family prayers today and always!

    ReplyDelete
    Replies
    1. Thanks jenn, they do a great job of presenting a positive atmosphere at st Jude. The things they can control and make better they do, it is a great comfort. Thank u for participating in race weekend!

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