It never gets easier.


This is a picture of Adler walking into the MRI room from a pervious MRI.  I think it was the one in April of 2015.  Looks like it because he had some hair growth then.

See, there’s line that says DO NOT CROSS in yellow letters on the floor with a big yellow line right across the floor.  This is the last stop before he goes in.  And I have cried for most of them.  I try not to but I can’t help it.  It’s not out of fear but out of honor.  He’s so courageous.  He walks in all by himself, never looking scared or turning back to look at us as we wait for him to walk in after they wand him to check for metal.  They are always so nice and making jokes about him being a robot or something like that while they walk in.  One of the nurses always holds his hand picked guys to go into the tube with him along with his blankie.  Reese, his favorite brown doggie has been in every one and to every surgery too.  Ya never know who else may go along?

Before all that happens, it’s the calm before the storm.  The scanxiety sets in like right now.  He has his every 3 month MRI on Tuesday so we will leave for Chicago tomorrow afternoon and stay 2 nights in a hotel about 4 blocks from the hospital.  We stay there every time.  Adler has a little fan club forming there even.  Tonight I will pack a few things but mostly I will wait until tomorrow and make sure all is ready.  I will have to start stress dosing him with steroids too as he will be sedated for the 2.5 hour MRI.  So with his adrenal insufficiency, he requires a stress dose 24 hours prior and 24 hours after sedation as that puts stress on his body.

You would think it would get easier……but it doesn’t.  Yes it becomes routine and we get used to it so to speak.  The packing for 2 nights, the drive up there is like nothing for my husband now and Adler even has his little habits he’s created.  Lurie Children’s Hospital has become another home to us as we are so familiar with it.  Hell, that 15 day stay was like home in the summer of 2014.  Now we visit every 3 months for the MRI one day and results with his neurosurgeon and neuro-oncologist the next day.  Its like clockwork.  But even that tic toc is still uncomfortable.

I have calming music on now as I type.  Adler is playing his Wii U with his daddy and I am trying to just float along the shore of some tropical beach in my mind.  Jeans and clothes washed and folded ready for the grey suitcase we bought never knowing just how often we’d be using it.  His skull suitcase and matching back pack out in his room ready for him to pick out what he wants to take.  The black polka dot bag will be brought up for snacks and drinks to fill the mini fridge in the hotel room.  Adler loves to order room service.  Especially the crab cakes.  He loves them!!  And French fries with ranch dressing.  We always get pasta from the little restaurant in the building that my parent’s apartment is in too.  They got that apartment right before his pain began as a weekend getaway for them.  Who knew it would be used for this too?  I will make sure all his meds are ready too and his numbing cream and press and seal for his port.  They will access his port to sedate him and flush it and pull labs as well.

This is the post chemo MRI.  This isn’t the scary one yet.  I mean they are all somewhat scary, but we know there was some improvement last time so why wouldn’t this one be as good or better??  He’s completed his chemo protocol for this go around and is considered stable so we expect good results.  I feel confident in that too but, it doesn’t take the nervous feeling out of my stomach as I know my baby will be put to sleep again.

We will be first in the morning so we will be tired but pumped with nervous energy.  All of us.  Adler will need to be washed with antibacterial soap and not lotion afterwards tomorrow before we go in prep for it.  We will arrive early and he will ride in his red wheel chair up to the 5th floor and we will check in.  That’s THE waiting room.  The one I hate.  It’s the one where we sat so late at night all alone when Adler was admitted the very first time.  It will be busy and cartoons on and other families going to imaging or surgery.  They will put a bracelet on both Aaron and I with Adler’s number on it that shows up on a TV screen so we will know when he’s out of the MRI and in recovery.  We will fill out the same paper work we always do and they will call him back.  We will walk back to the prep room which is much like that of an ER room.  It’s small with a bed and 2 chairs but they will bring one for my mom.  Adler will need to put a gown on and I will make sure he has some tread socks to wear after they weigh and measure him.  His vitals will be taken and recorded and he will be on his iPad by then and hopped up on the bed ready to be accessed.  They will go over his meds with me and I will ramble off names and numbers and amounts and then another nurse will come in and help access him.  Adler will do just fine while I hold his iPad and hand and then we wait until they take us to the MRI area.  He will want to ride down in the bed to the area and they will drive him down there.  We never know just how long of a wait it will be.  Then once down there we fill out one more sheet of paper and I always tease him about having tattoos or piercings.  It’s on there!!

The anesthesiologist will come and say hi again as he or she would have in the other waiting room already.  Then it’s time.  A very kind couple of nurses will come over and he will slide off the bed and make sure his guys are with one of them and I will hold his hand to the line, daddy right there too and my mom.  We will hug and kiss him and tell him to have nice happy sweet dreams and then he walks away.  We stay a minute to watch him walk to the door of the MRI room, even though they always have someone to usher us back to the waiting room.  The tears well up as I hear him chatting and my heart follows him into that room.  My mind swims with memories of all the other times we have done this and most of them are good ones.  He is so brave.  Full of strength.  He’s been doing this since he was 4!  But last time, he had a look and he said he was a little nervous.  I said “me too, but just know I will be right there as soon as you wake up”  and he hugged me and said “I know”.  And there it is.  I will be there right when he wakes up.  Always.  Always.  Always!!!

We will leave the area, head up to the 11th floor to the cafeteria and gift shop area.  We always buy him a new guy to have when he wakes up.  He loves stuffed animals.  We have even found solace in the chapel too.  Its very quiet and serine in there. The stained glass windows are lovely too.  I don’t always pray, but I sit quietly and I think that’s close enough.

They have my cell number and I keep a close eye on the time as I want to be right there when they call for us to come back to recovery. We will go back down to the 5th floor waiting room and I will check the TV screen about 20 times checking the status of our boy.  I won’t be able to be still until I can see him.  Until I can touch him and kiss him and hold his hand.  Then, I will be OK.

He will take awhile to wake up and they let him rest.   The nurses are always super nice and we will chat with them as he sleeps.  He will come around and I will reassure him that mommy is right there and give him lots of kisses and touches.  Then he will be a little thirsty and usually drinks some Gatorade. They will give him snacks that he won’t want as he knows he has his own in the room and we will be ordering pasta for dinner or lunch depending on how long it all takes.  I will cuddle him a ton and help him dress once he’s ready.  We also have to wait for a neurosurgeon to come and adjust his shunt as the MRI is a magnet and will mess up the flow.

The red wheelchair ready to take him down to the car and back to the hotel room.  Resting on the bed and hanging out with the appointments and results coming up the next day.  We will have that pasta and watch some hotel TV and rent a movie or 2.  Some iPad time and then we will rest.  He likes it because he gets to sleep with me in the bed.  He loves that.  He would love it if I did it more with him at home too.  I do every now and then.  But since he’s grown so much and has so many guys in his bed, mommy doesn’t fit!!

We will wake and meet my parents for breakfast and usually see the same waiters and waitresses and they know him by name now.  Then maybe he will nap before the appointments and off we go back down the street to the hospital.  Up to floor 18 to see the docs.  We love those guys and they love Adler.  They come in back to back.  Both with good news we hope!!!  This is the time for questions and answers.  They always seem positive and reassuring.  Dr. DiPatri is usually first, the neurosurgeon and then Dr. Lula the oncologist.  Some high fives with Adler after they both check him over and we discuss the results and take a look at the images.   Then my mom will bring our car over from the parking garage and then we will head back home.  It usually takes the drive home to process it all no matter the results.  Its just that, such a process.  Decompression will happen later.  Phew……

So there it is…..our every 3 months.  And it never gets easier. I wish it would.  I wish he didn’t have to go through this every 3 months but he does.  That’s our life.  His life.  And we cherish every second of it even if it’s spent in a waiting room on the 5th floor every 3 months.


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