Showing posts with label MIBG. Show all posts
Showing posts with label MIBG. Show all posts

Friday, January 18, 2013

Pennies From Heaven...

that's what I call them...

...and they are real.

Once a friend sent me a story in an email about a man that was rich beyond all measure, yet while walking with his friend, he stopped to pick up a penny from the dirty ground and put it in his pocket.

His companion asked him why he would pick up a dirty penny when he had so much wealth.

The man's response was to hold the penny up and show his friend the words, "In God We Trust"

He said that it was a reminder each time he picked up a penny.

In God We Trust.

Not long after reading that story, we were in Philly for scans.  We were staying at a hotel with an indoor courtyard. Braden loved to walk around that courtyard so we did, for hours at a time in the evenings.

And as we would walk, I would pray...

and worry.

During one of our scan visits, I had watched his CT scan and was certain I had seen a new spot.

And they were acting strange and made us do another picture...something about a shadow...

I was sure the disease was progressing.

When we got back to the hotel, I had gone into the bathroom and cried and (in my head) screamed at God asking "WHY?  We have been faithful, we have given it to you, but WHY must he die? I don't understand!  I understood Heaven was the right choice for Miranda and I prayed for her to go to Heaven because she needed you more than I needed her, but WHY, WHY must I give you Braden too..I don't understand!!!"

I got it back together to take Braden out to walk...he loved it and I wanted the time to think, pray and spend a few hours with him before we got what I was certain was going to be awful news the next day.

I wanted a few more minutes of "it COULD still be okay" time before the world crashed in with those scan results.

So we headed out...

As we were walking, Braden stopped abruptly in his tracks and I bumped into him.

I nearly fell and nearly toppled him over with me.

Braden began walking again and I looked down...

there...on the carpet right where he had stopped for no apparent reason, was a penny.

I picked it up...

...and cried.

It was face up...

In God We Trust.

I put it in my pocket.

And the next day when we went for our MIBG scan, I had it in my pocket and I kept rubbing it the entire scan...and I prayed.

I closed my eyes and just kept repeating, "trust, trust..." almost a mantra.

As we left the sedation room about an hour later, I caught a glimpse of Dr. Mosse walking into the CT scan review room.

We were scheduled to meet with her in just a few minutes.

It had to be because they called her to check out "the shadow" from the CT the day before.

I kept rubbing that penny in my pocket and telling myself to trust.

After an long wait filled with apprehension, Dr. Mosse told us his scans looked improved.

I nearly fell over.

I still don't know what the problem with the CT was...

and I never asked because when you get good news,

you just say thank you and move on. :)

I believe that penny was from my mom who has been in Heaven since 1984 when she died from a brain tumor.

In fact, I know it.

I have found a penny on most of our trips to Philly although the past two I have not.  And yes, that worries me, but both of those trips have had a sundog either during or right before (from Miranda).

Once I found a penny on the seat of a cab.

Another time, I found a penny under Braden's chair in the sedation waiting room.

There have been others as well...

I keep every one of them, and on the harder days, I pull them out and rub each of them and remind myself to

TRUST.

Pennies from Heaven...

TAKE THAT cANCER!



Thursday, January 17, 2013

PTL!

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

HALLELUJAH!!!

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. 

But...it 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.

UGH!!

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...

including...

"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 reinforcement...so he said it again...to 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 gate...it 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 it...as 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.

Hmmmmmm....

...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.

...by 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 April...so barring unforseen circumstances, we are good until then...

HOPE!!!

And thanks!! XOXOX!