Thursday, January 17, 2013


We are home and Braden's scans were clear!!


What a tremendous blessing!!!

It always takes a looooong time for Dr. Mosse to come into the room to deliver the news.

I should be used to the wait by now, but...I'm not.

His MIBG scan was at 8:00 and then we met with Dr. Mosse at noon to get the results. Another reason I love scanning in Philly.  You get the results moments later. In KC, it takes several days.

Every tick of the clock while you are waiting is audible and painful.

So..I try everything I can to see the scan images so I can get an initial look as the scan as going on. ;)

I sit with Braden during his scan and rub his head...his two favorite toys in the world, his tigers (Tiger and Nudder Tiger) go through the scan machine with him as well.

The MIBG isotope is given to Braden through his port the day before the scan.  It attaches to various organs and tissue in his body and then some things "light up" on scans.

Some things it attaches to normally like the liver and the parotids, etc. also attaches to neuroblastoma cells.

The image appears slowly over an hour. Much like watching someone sliding a piece of paper down a page of a book to reveal the next sentence.

Except it creeps.

I watch the image build on the computer and look for anything lighting up that is not supposed to light up.

Big stuff is obvious, but I can't see the little stuff they can see.

The first time Braden had a normal scan I was freaking out because it looked so different and I KNEW the disease was progressing. 

Whoops. :)  This is why is it NOT a good idea for me to watch those images.

The techs always pull up the images to send to the doc as we are still in the room so the docs can check to insure no other pictures are needed before we leave.

Those are the images that are a little more visible...they looked good to me from 15 feet away staring at a small computer screen.

So I felt pretty good.

UNTIL, I waited 3 hours.

Then we waited another hour in the clinic.

As I sat there, I began to do what I always do...wonder and worry.  Maybe it was taking so long because they found new disease and they needed to check things out even closer.


And I pray...I pray a LOT!

Dr. Mosse came in and talked to Braden (she always gets down on her knees so she is eye level) and asked him to give her a high five. 

I knew we were okay.  She always does that when the scans are clear!!

Thank you LORD!!!

There are no words to describe the relief we feel when we hear those words...

and there are no words to describe the guilt we feel because so many of our friends are not this fortunate.

No words.

I will never know why and I will never understand.

I am more grateful than I could ever describe for the time we have been given.  We never take it for granted.

But I wish all of our friends could hear those words.

Braden and I headed to the airport and got there plenty early for our flight. 

Going through security with a child with autism is always a blast!! LOL!

He really does a good job...I'm very proud of him.

We always get pulled aside because we have so many liquids with all of his meds and they have to individually test them.

Mr. Chatter Box always visits with the folks doing the tests..which is awesome, and we've been lucky and had really nice security people doing the tests who don't mind him chatting!

Well...this time, we got a HUGE dude...I mean HUGE!! He was about 6 foot 6 and probably 300 pounds...VERY muscular and looked like he could be an offensive lineman.

BIG dude!!

Serious dude.

It didn't look good.

Well...Braden decided to chat and told him all about everything...that he got his pictures in the cheese (you say cheese when you get a picture taken so he calls the scan machine "the cheese"), and that he went sleepy sleep, and saw Dr. Mosse and Maggie (his nurse), and he played with the trucks and in the kitchen and made the macaroni and cheese, and he had Captain America shoes, and he has two tigers in his backpack and he loves his blue backpack and that he's going on the airplane and the airplane is going to go taking off and go "zooooom".....

and a hundred other things...


"And I go pee pee in the potty. I just squirt the pee pee out of my pee-ann-is".

It was at this point that the BIG dude, began to silently chuckle....then tears rolled down his face.

Mine too, I admit it.

Then Braden started laughing...never EVER reinforce something you don't want him to repeat...and that laughter was he said it the lady at the airport store where we bought Zach a gift.

As we walked away, I could see the BIG dude walking over to his security team members laughing..I can only imagine the story he told them.

Seriously...this is my life.

As we sat at our gate, I plugged in our iPad so it would be fully charged for the trip.  Braden travels well (now) but the iPad is an essential component to a successful trip.

We were there early enough that the flight to Detroit was still at the had been delayed too.

This Mr. Fancy Pants was pacing the floor talking on his BluTooth (quite loudly) about some report, I can only assume it must have been an essential TPS report ;) that someone apparently didn't get and they should have read and if they had read it, they would understand that whatever that person was talking about was not correct and why hadn't they read it...blahblahblah!!!

I didn't want to hear it...I was FORCED to hear were the others in the gate area.

Well..Mr. Fancy Pants decided he would send the report to the person on the other end, but his computer had no power so he needed to plug in.

He sat down near me to plug his into the same outlet.  There were two and mine was plugged into the bottom one...the top one didn't work.

He figured that out quickly, looked at me, apparently decided I didn't really need the plug and then...

... and this is the annoying part... LOL!

...he unplugged my plug and plugged his cord in.


...that there just ain't right.

He began busily working to get his computer to come back to life.

So I simply reached over and unplugged Mr. AquaVelva's plug and plugged mine back in.

He realized it quickly...not sure if it was because I THREW the cord into the middle of the floor almost hitting near his perfectly shined shoes or because his computer went dead. gones....

BUT...when he realized, he looked at me with a "WTH?" look and a gaping mouth.

I gave him the "mom look"...moms know what I mean...the one that says...if you do that one more time, you are going to time out.

And believe me, he needed time out! :)

He got up...stomped like a three year old and went to another gate to charge his computer because it was, indeed, the one and only outlet I could find at that gate.

Not long after, another guy came over. I told him the top one didn't work and there weren't any others.  I could see the stress on his face so I asked if he needed it to work and he said yes but that he would go across the hallway to find an outlet.

I unplugged my iPad for him.

See...all you have to do is be nice and I won't even make you ask and say please...I will just offer... :)

Braden and I went for a walk, found another outlet, charged my phone and the iPad and then made our way back to our gate.

I didn't see Mr. Fancy Pants again...darn...

....we had "bonded"...

and I wanted to wish him a happy trip...

...okay, maybe a one finger wish, but still. :)

I was on such an emotional high, I could have taken on the world.

At least in my own mind! LOL!!

Thank you for sharing the word about Braden and for your thoughts and prayers for his scans.

They work miracles...I just know it!!

We scan again in barring unforseen circumstances, we are good until then...


And thanks!! XOXOX!