Our Summer Vacation...

It is very difficult to choose the perfect vacation when you believe it is likely your last as a family of four.

We weren't planning on going on vacation this summer, it was just too expensive. We thought we might drive to the zoo in Omaha for a weekend.

Once Braden received the diagnosis of mds and the news that he had several weeks to a few months to live, a vacation to make memories seemed pressing.  And that is when people from all over the world jumped in to help.

Two friends of ours set up a fund online for our vacation. We had no idea they were doing this, and I think they may have been a little nervous about doing it...they were determined and we were very grateful.

That fund raised over $20,000 and we were able to go pretty much anywhere we wanted. We thought about things that Braden loves and that Zach would enjoy too...and we took climate and temperatures into consideration.

We arrived at a decision to go to LasVegas...no, not to gamble the fund double or nothing...for one reason only...to see the water fountain at the Bellagio. One of Braden's most favorite things in the world is fountains...he calls them "pretty water".  Then we would go to DisneyLand in Anaheim and see the World of Color water feature...lastly to San Diego to see Sea World and the ocean and take a boat ride on the water.

And that is just what we did. However, the story doesn't end there.

It's really just the beginning.

As if anything could really top hundreds of people giving up over $20,000 for a vacation and to pay medical bills which is EXTREMELY useful. It's amazing how those mount up even with great insurance.

That gift is beyond description...thank you to EVERYONE who helped!

As I said, the story only begins there....

Before we left, I had a lot of texts, emails, phone calls, and help from many people to make this as special as possible for Braden.

First, a very sweet friend helped set up a room at the Bellagio that had a fountain view. We could watch the fountains from our room and the first time he saw them, he flipped!! That was during daylight hours, and at night, he fought sleep so he could stay up to see it one more time.

The look on his face was the best.

And that evening, Las Vegas had a thunderstorm.

Seriously!!

Flooding, lightning, wind, the whole works. AND...a rainbow.

Thank you Miranda Grace.

We then picked up our rental car...it was supposed to be a Chevy...we freaked out when a brand new Mercedes Benz SUV was waiting in our spot!!  We double checked to be sure it was ours and then we made a break for it before they realized the mistake! :) LOL!!

UNREAL!!!!

We drove across the desert to Braden's delight..he loves cactus...and arrived in California to the Grand Californian Hotel...AWESOMENESS!!

We were once again showered with the VIP treatment thanks to a friend who helped us get that room with a view of California Adventure Park that was amazing. The roller coasters were right outside our room and we had a small view of the World of Color show from our balcony as well! :)

 Then we met this beautiful lady...the sister-in-law of Braden's preschool's teacher's friends.  Yes...follow that...point is that our new friend, Lisa, organized something we could never have dreamed of for Braden the next day.

Lisa is the Lead for the parade at DisneyLand and she got us a private meeting with Mickey Mouse!! UNREAL!!! THEN, she took us on a boat ride in DisneyLand on our own boat...very special. She left us and told us when to show up for the parade (and another show) where she had seats organized for us...

We showed up for the parade and Lisa was back...it was her day off!! Again, unreal!! She handed us this card that had the signatures of all of the characters in the parade!!

And as the parade proceeded, we got lots of waves and a few hugs from several of the characters!! Braden was full on freaking OUT during the parade. Screaming at the top of his lungs at each character, "IT'S ME...BRADEN!!  HI GOOFY, HI DONALD DUCK!!!!" and on and on and on.  He REALLY liked Donald Duck.

We left Lisa and rode a bunch of rides...the boys' favorites were the Buzz Lightyear Ride and the Star Wars Simulator (which we did SEVERAL times).

I got a text from Lisa telling me that something very special was being planned for Braden during the fireworks show that night...for which she had again organized VIP seating.

As we waited on the bench for the fireworks, a group approached up and told us that 12 special fireworks had been placed on the castle JUST for Braden. The actual fireworks had Braden's name written on them and they were not usually fired off...they were specially choreographed in just for him.

I cried.  And as we waited for them to start the show, they presented special "cast only" pins to the boys, balloons, and so many other special things!!

The fireworks were beautiful...my phone battery had died so I don't have pics but Brian does on his phone.  It was AMAZING!!!

But wait...there's more.

After the show, they swooped us off to a special room where we opened our eyes and right there, in front of us was...Donald Duck!!!

Not even kidding!!

And the room was FILLED with special mementoes from the gang at DisneyLand.  They had a photographer there and the next day we picked up a whole packet of photos they made for us!! It was UNBELIEVABLE!!!

We could honestly have never dreamed something this amazing.  Thank you Lisa!! It was a magical day!!

The next day we went to California Adventure Park and it was also wonderful...and the World of Color show is beyond explanation!! I felt that same way watching that as I did the first time I watched a Cirque show.  I highly recommend it!

Then off to San Diego where another friend got us a great deal on a room at Seaport Village with an amazing view!  We started at Sea World. More special surprises were waiting for us there as a friend has a friend who trains whales and dolphins there.  Pretty sure that is the coolest job EVER!!

Well...Wendy gave us a behind the scenes tour of the Dolphin Show and we got to meet them and touch them...and feed them!! SOO cool!! Wendy even organized it so that we got to go backstage at the Clyde and Seymore Show (sea lions and otters) to meet them as well! I really cannot tell you how amazing that was!! Touching and feeding dolphin, pilot whales, sea lions, and otters....WOW!!!! Everything I have of the boys touching and feeding them is video and that won't upload here.  Rats!

The next day we were off to LegoLand but FIRST, we got to meet up with some of our friends who moved out there (and who are now luckily moving back home!)  They gave us LegoLand tickets and lots of hugs!! SO much fun!! And we had a blast at LegoLand as well!!

Braden was getting a little worn out on crowds and no routine so we decided to do some things that had fewer crowds and required less "come on...we need to go now" stuff.  So we went to see the Midway ship which was right outside our hotel and went for a cruise on a boat...that was AWESOME!! He loved seeing the wake behind the boat!! And the Captain even let him drive!! 

The next day we did some small detours like Balboa park where we actually PLAYED at a park!! :)  And then we drove along the highway and found the beach. It was a real detour...we hadn't planned it but it was there so we stopped and did the Kansas Kids version of the beach without swim suits. :)

I took this picture of Braden and later saw that he has two shadows in it. For me, it was a sign. There is one shadow that is weak and wobbly and one that is strong and straight...I see it as the two sides of Braden...the one that is sick and the one that is strong...and the strong side wins.

I don't know if he wins on Earth or in Heaven but I know which way I'm voting!! :)

We flew to Phoenix from San Diego and on our two hour layover, we got to see Brian's parents...the boys were THRILLED to see Grandma and Poppy!! :)

And when we landed in KC from Phoenix, we had a very special surprise waiting for us.  KCI Airport, the City of Kansas City, Missouri, and SouthWest Airlines organized a very special treat for Braden because he likes water features so much.

They did a water salute to him...lined two airport firetrucks on the runway and sprayed the plane with a heart shaped arch of water. B was THRILLED!!!  This is a very rare thing...reserved only for retiring pilots, and war heroes...so meaningful and so beautiful.

I fought tears to tape it from inside the plane. I have attached a news story from KSHB 41 as well as video that KCI shot of the water salute. We simply cannot thank everyone who made this happen enough. Mark Williams, a parent of a BVSW softball player, is responsible for organizing this. We have never met him!! Simply remarkable!!

Here is the news story from JiaoJiao Shen who is a reporter who does so much for our children with cancer!! :) (and Braden LOVES her)

http://www.kshb.com/dpp/news/local_news/kansas-city-firefighters-offer-special-tribute-to-young-cancer-patient-at-kci


And here is the YouTube Video that KCI shot...it's amazing!!

http://www.youtube.com/watch?v=vWfXJ17cU2w&feature=youtu.be


It was a vacation that was beyond our biggest dreams and we cannot ever thank everyone enough!!

TAKE THAT cANCER!!!

Tomorrow reality hits again...we go to clinic to have his bone marrow aspirates and biopsy as well as begin his shots that arrived the day after we did.

cAncer hasn't gone away...but we sure got a nice break from it before we start the real battle!!

HOPE!!!

Blessings...

If you haven't heard, we were told that Braden has a pre-leukemia (MDS) and it is a result of his treatments. They believe it was either the MIBG or the Temodar chemotherapy he had for 8 months.

And the odds of survival are really horrible. I mean really horrible.

We were told Braden had weeks to a few months to live.

So we are searching the world right now for anything that could help him.

We have known that we were likely trading long term for short term when we had to do these treatments to try to prolong his life.  And we got 3 years we were told we wouldn't.

It doesn't make this news any easier.

We have been living for this moment for 6 years. We have detoured at every opportunity, we have completely soaked in each minute and made memories cANCER can never take away from us.

I have memorized my son's face, fingers, toes, eyelashes, everything because I have feared the day when I would say goodbye to him and never see him again.

We have been optimistic and hopeful realists.

And...it doesn't make this any easier.

I don't want him to die.

And I am completely, and utterly not in control of this.

To be very clear, I do NOT believe that this is God's work or God's will...I don't.

The God I believe in does NOT give children cancer and watch them suffer and die.  I will never believe that and I will refute any discussions/suggestions of "This is God's will" and "Only the good die young"....not helpful statements and I believe they are wrong.  The God I believe in is crying right now with us.

And again...it doesn't make this much easier but it does cut the "why" question out for me.

Braden feels fine right now so we are hitting the detour trail like crazy. We went to the water park today and have two more detours planned for tomorrow.

We even stopped at an arcade on the way from the hospital after we got the diagnoses because he wanted to play Skee Ball.

We haven't given up yet...we are still searching, but we are realists.

And all I can think about is things like the new shoes I bought him a week ago that were a little bit too big.

It didn't worry me at all because I figured he would grow into them...

And his birthday, September 9...will he see the age of 9?

Halloween...Thanksgiving...Christmas.....

I put our Christmas stockings away every year by kissing Braden's, putting it on top of the pile, and hoping he will still be here the following year when I pull them out again.

Am I going to be able to even look at that box?

Zach's hand-me-down winter clothes that I had already put in Braden's closet when I cleared things out for summer.

I'm sort of lost right now.

He is full of life! We are so blessed that he is still "Braden" right now!

I watched him at the water park today running around, turning levers to make different things shoot water, and the entire time he was smiling and laughing.

I cried as I watched him because there is SO much joy and life in this child.

He doesn't have clue he is supposed to die soon.

What a blessing!!  Thank you autism.

But we do, Zach does, and so do all of our friends, who are truly our family.

We have been absolutely inundated with messages, calls, texts, emails, etc from thousands of people from all over the world who are hoping and praying with us.

The amount of love and kindness people have shown our family is absolutely humbling. Seriously. It's remarkable.

I read every message and I cherish them. I just can't respond. There are so many that it's impossible and my heart just cannot do it.

I'm still in the stage of putting up my fortress because I can't deal with all the collective sadness when I'm still identifying my own.  I will get there, but I'm very slow at this so please don't take it personally. I will sound like a bad date but "Really...it's not you, it's me!" :)

We still have time for more memories and we will continue to create them and wait for more information that could help prolong his life.  That's a gigantic blessing.

TIME!

We don't know how much but we know we have some which is a lot more than many people get with death.

I think about our friends who have had to say goodbye to their babies. I think about them every day. And my heart aches for them.

No parent should have to do this with their child.

It is NOT right, it is not fair and it is not okay.

I want to hold him every minute, I want to kiss him every second.

I want to smell his hair, and tickle him until he gets the hiccups.

I want to tell him I love him a billion times a day and hear it from him that many as well.

I want to watch him run and play and have fun like any little boy.

And I want to find cancer in a dark alley....

It threatens to kill him again.  STOP IT cANCER!

Leave our son ALONE!!!!

But no matter how much I wish it and how much I cry and how loudly I scream...I cannot change the fact that he has this disease in a new form and things looks scarier than they ever have before.

SO....

For now...I try to put all of the "realist" things in the back of my mind and spend my time cherishing every minute, continuing to fight, making memories, living, loving...

And hoping.

We will ALWAYS hope.

Please hope with us!

We have so many blessings...the greatest are love, friends, faith, and hope!

Now is not the time to give in, now is the time to pray or whatever you believe in harder than you have EVER done before.

HOPE...

TAKE THAT cANCER!