Camping...

Braden just had scans in Philly...

and he did well and the results continued to show no evidence of disease!!

That is really no small sentence...it is really miraculous!!

Every scan, I hold my breath and pray.

This time, we found a penny early on. Braden was watching cartoons on a television in the airport in Chicago. He walked over, handed picked it up and handed it to me, then went back to cartoons.

I felt so much better!!  If you are confused, check out the "Pennies From Heaven" post I did on January 18. :) http://deliecehofen.blogspot.com/2013_01_18_archive.html

 And then there was the sunset view from our window the night before his scan. I could almost feel our angels smiling! WOW!

Dr. Mosse gave us the great news and we were off to the airport. Happy DAY!!! Nothing really upsets me after a good news day. It's all about perspective...

Seriously!

Nearly every visit since his first clear scan, we've had a problem getting out of Philly. Blizzards, hurricanes, flooding, plane mechanical problems, flight crew not there, you name it.  Almost every single time. We just expect it now! :)

This time did not disappoint.  Our layover was in Chicago.

Just a few minutes before we were to board the plane, they came on to tell us our crew wasn't there yet. As she was speaking they appeared.  Whew!! I figured this one was going to be easy, false alarm!

We boarded the plane and the captain got on the intercom with "news".

He said Chicago was not allowing any flights in or out due to weather.  BUT...he said we could deplane and then just hang out in the terminal close by. 

That sounded GREAT to me!! It was going to be an hour before they had an update.

An hour turned into 2...plus...people were lined up for a LONG distance trying to make arrangements for missed connections, etc.

Braden and I played hide and seek. It was WAY more fun.  That giggle is the best sound EVER!

I figured that if there were problems with getting in and OUT of Chicago, our connecting flight would likely be delayed too and there's an hour difference between Philly and Chicago, so we might make it. And if we didn't...who cares???

I got on my cell phone and sent some texts and my amazing friends had me covered with Zach in about 2 minutes!! I'm SO blessed to know such incredible people!!

Then they came on the intercom and weren't sure we were getting out, so I started looking for rooms in Philly...and two minutes later, we were boarding.

LOL!

We got to Chicago...okay, it was a "tad" bumpy but we've had worse and we were only 15 minutes passed our scheduled departure. The airport was a zoo...complete and total zoo!!

We checked the info to get our gate number and found out our flight had been cancelled.  Oh well. At least we weren't late!! :)  We headed to the gate to rebook.  The moving sidewalks became a challenge for Braden who tried to pass every single person on them...mom was panting like a dog by the time we were done. That boy can move when he wants to! :)

On our way, half of the US Navy along with a whole unit of bagpipers lined the hallway.  We were in a hurry but Braden wanted to watch the "parade".  We watched and walked slowly...nothing was happening yet but they were obviously waiting for something/someone to come off that plane.  I was curious. Hmmm.... But I knew we needed to rebook and if those bagpipes started, Braden would FREAK out!!

The kid with the severe hearing loss due to chemo cannot handle loud noises.  He cries and cries and it's absolutely heartbreaking!! Poor guy...so we zipped fairly quickly.

We made it to our gate, got rebooked, and then tried to get a room but everything was full close to the airport. Our flight was at 6 and it was already about 10:30. Not long...easy peasy!

The lady told us they were setting up cots.  Ugh...but worth a look. Already I was cringing with the thought of all of those germs...MAJOR germaphobe here!!

As we were making our way to the cot area, we saw the navy parade happening, but the bagpipes were gone. I was really curious now. They were escorting a long line of people individually through a corridor of navy sailors.

Hmmm again.

We walked over to watch the parade and realized it was actually an entire plane of WWII veterans they were escorting.  I don't know where from or where to but it was so cool.  MANY passengers were lined up and clapping for the men who were being escorted in wheelchairs (some were walking) as the sailors saluted along the perimeter of their path.  Braden and I clapped for them for about 10 minutes, we tried to leave but he wanted to stay and watch more of the parade. He saluted just like the sailors. It was priceless!!

I had tears. It was just beautiful to see those men waving at the crowd and smiling. They were so very proud and happy.  Just awesome!

After the parade, we did make it to the cots.  They weren't horrible looking, but still...germs!! We picked the only two left that were near an outlet. I put the blankets down over the cot, they were clean and then covered Braden with his penguin blankie from home.

Airport rule #1...he who controls the outlet, rules the airport terminal world!! Especially when there are only 2 in the hallway with the cots. LOL!  Many came after and many coveted my outlet, but alas, it was taken.  So sorry poor friends.... :)

Having staked my claim, I decided to put the blanket on the cot and push the cots together so I would be right beside Braden.  My greatest fear was that he would wake up while I was asleep and he would wander away out of curiosity...looking for that parade again! I knew I would not be sleeping, but I hoped he would.

I stashed everything of value (my phone and the iPad in my backpack at our heads and then squished our cots against it so no one could take them.  That...and we were directly across from the security desk...it was pretty safe!!

If you've ever had the pleasure of sleeping in an airport on a cot...okay admittedly overuse of the word "pleasure"...you already know that they don't dim any lights and they don't put you in an area where people aren't marching through...hey wait a minute...it was an all night parade!! :) Lucky us!  Braden would just close his eyes, and somebody would come through with the vaccuum truck, or trash cans, or security people walkie talkies,  or security people laughing and giggling.

My "favorite" was my fellow stranded passengers who were clearly upset that they were stranded passengers. 

One lady parked it right next to me at about 2 am, she used the f-bomb about 4 times (which I can appreciate except I had an 8 year old with me). I looked at her and gave her the look. She grimaced at me and I pointed to Braden who was now wide awake.  She apologized but kept right on bitching out loud, just stopped with the f-bomb.  I asked her if she could bitch quietly so she wouldn't wake up my son.  She was not amused and changed the bitching to loud sighing.  

I think I preferred the bitching.  

I echoed her sighs each time she let one roar, which annoyed her...and made me giggle.  

Then there was the lady who came in with two adult children and began screaming at the top of her lungs to tell them which cots to take.  Woke him up again. I gave her the look and the daughter cringed.  The mom glared at me. I glared back. I don't think she wanted to try a "glare down contest" because she had them all get their stuff and move to another area.  I didn't realize why until 4:30 am when I finally got to see myself in a mirror.  Yup...I would have been scared too. :)

It was raining so hard!! I mean REALLY hard!! And at 4am, the security people all assembled 10 feet from our cots and had a security team meeting. It was very official.  LOL! They were placed on a higher alert level because of potential flooding.  

I know this because I was pretty much in the meeting.  ;)

I know a lot of other top secret security team meeting information.  I could tell you, but we were all sworn to secrecy. :) Needless to say, my faith in our security systems at the airport dropped a few...a lot...of points!

Three of the security guys were laughing really loudly and saying, "Yup..wake up people, it's your 4 am wake up call! Your security team has a meeting. You can't sleep here anymore." 

Hahahahahahahaha....

Braden woke up, again, and was very groggy and confused.  He had slept about an hour, and on and off due to the noise the remainder of the time. The night before he slept for about 5 hours because I have to keep him up late and get him up early so he will sleep during scans without big sedatives, just IV Benedryl.  

And I hadn't slept at all, and had about 5 hours over 48 hours.

I was not amused by their stupidity and rudeness.  And, again, in my defense 5 hours in two night..total. My filter had slowly disappeared during the night and now Momma Bear was raging.

So it occured to me that I should tell them what I thought about their rudeness and stupidity.  Then I remembered they were security and could keep me from boarding the plane...

and then I remembered I was already in the terminal and I really didn't give a shit because of the filter loss.

SO...I walked the whole ten steps over to them.  And I explained why that particular remark was not amusing. I pointed to my confused and exhausted son who had just had cancer scans.  Braden was in tears because he was tired and in his words, "I'm done...".

The supervisor dude in the fancy suit walked over to see why I was bitching at the three dudes so I explained.  Then walked away.

Then it was HIS turn to give them the look.  

They didn't seem so cocky and amused any more.

I can't tell you what I was thinking...it's top secret. But it involved my first real laugh in hours! 

I gathered up our stuff, Braden, his tigers and his blankie and headed to the gate.  It couldn't be louder or more annoying.

It was still raining REALLY hard and there were lakes of water on the runways and in the grass. I wasn't convinced we were going anywhere, anytime soon.

We did get to board the plane, pretty much everyone on the plane was exhausted BUT at last, we were going home. 

And then the captain came over the intercom.

Oh shit!

He said, "folks...we have some news about our departure."

Every single one of us needed a button, right then.

He told us something, I don't even remember what, but it wasn't that we weren't going to leave.  WHEW!!!

We made it home and all was well. If you ask Braden, he will tell you he had a GREAT time camping!! 

I am not a camper.  :)

That boy loves everything!! 

Got lemons???  Let Braden at 'em!! :)  

TAKE THAT cANCER!!!

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!

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!