BIRTHDAY BOY!!

September 9 is a PRETTY BIG DEAL DAY at Hofen Centra!! 

There has got to be some magic in Braden's birthday date and age! 

He is 9 years old on 9-9!

TAKE THAT cANCER!!

I think it's the kind of magic like the stuff in "Frosty the Snowman"...

Well...without a black magician's hat...

...and a rabbit (oh I hope no one brings him a rabbit for his birthday now! LOL!)

We have so many dates that have special meaning and values. Miranda was born on 8-1-01, Zach 4-3-03, Braden 9-9-04, his new diagnosis day was on our anniversary...every single big thing has been on a special day...scans always line up with special days as well! 

It's pretty remarkable!!

So to turn 9 on 9-9 seems like it's important for some reason. It has to be good mojo of some sort!!

It's got to be magical!!  

We want to see double digits and beyond.  To be honest, I didn't think we would see this one when we got the diagnosis on July 8.

But he is here, he had a big party with his friends yesterday. He ran and climbed and bounced and jumped and partied for over 2 hours. 

And then he went to the Royals Game to meet a very special baseball team, The Bulldogs, who were our Hope Hits winning team. 

And...he got to see the 2014 Royals Calendars for Sale at Kauffman Stadium...oh and Braden and George Brett on the Crown!! 

and on Monday, he is turning 9!

Talk about blessed!!! 

The reality behind this birthday being likely his last still hits us very hard, and we are going to celebrate it like crazy as a result.

We've done this before.  

He wasn't supposed to get 4...then his relapse diagnosis came a month before his 5th birthday...

That was supposed to be the last. 

He showed cANCER who is boss...and he is here to turn 9.

And I believe in miracles!!  

We are NOT giving up yet!!!

I'm sticking with "Hopeful Realist" to describe our mood overall. 

But...September 9 the mood is ONLY

HAPPY

GRATEFUL

HUMBLE

and in complete AWE of God's glory and blessing!

TAKE THAT cANCER!!!

BRADEN WINS!!!!!

...and so does his new fishie "Darlin" :)  Thanks Ms. Kim!! (you stinker!)

Pain is pain...

So things in our lives have been a little crazy...and sad...and fearful...and worriesome...and all shades of crappy....

Mixed with overwhelming joy and love and happiness...

It's the roller coaster ride of a family who has a child with cANCER.

Up and down and twirly and swirly....then you throw up...then you laugh...

but you always want off the ride.

This is our third time on the ride.

Braden's third cANCER battle.

I didn't sign up for this shit...and I didn't get in the line...

I'm pretty sure I was thrown onto the ride kicking and screaming.

Needless to say, it's been chaotic and overwhelming.

Well, I have had many conversations with my friends in which I've learned that they, too, have had their own roller coaster rides. Filled with their own twirly swirly dips and twists, throwing up, and wanting off.

But they haven't said anything to me.

When I do finally get them to come clean, they apologize profusely and say, "You have SO much going on right now...I didn't want to bother you and I didn't want to make you more sad".

So let's just talk about that because it's sort of an taboo thing to talk about in society. Nobody really knows what to do and how to handle situations like mine.  I've always believed open communication and talking about the elephant in the room is the way to go.

I can't speak for everyone in similar shoes, but this is what I need and want my friends to know! :)

First, NOTHING can make me more sad about my own stuff.  Nothing.  Once again my son has overwhelming odds of dying or surviving only to have devastating side effects which could result in him not having "quality time".

So nothing can EVER make me more sad about that.  I have crossed over into the infinity to the power of infinity, plus one level of sadness.

I'm kicking ASS in the Sadness Olympics!

If there were such a thing.... LOL!

BUT....it doesn't mean that I can't empathize with someone else's sadness. And it doesn't mean I can't be helpful with someone else's "stuff".

I'm not saying I will be helpful...I'm still me and quite often a complete mess and I often insert my foot into my mouth...

(figuratively)

Unless I have had entirely too much tequila...

Then all bets are off.

But I want to try.

I want to be a part of my friends' lives, I want to hear from other cANCER moms, and I want to try to help find resources and help for them too.

It actually helps me to help someone else. It gives me something that I can try to control and result in a better outcome for someone else.

I want to be a part of my friends' lives.

It fills my heart and soul to TRY to help.

So let me.

Many of my friends have apologized for what they are worried, stressed, sad, fearful about because they think what they are going through is not nearly as big as what I'm going through.

My response is always the same...

Anyone who feels the need to quantify sadness, worry, stress, and fear is not thinking. And, frankly, not a very good person.

Pain is pain.

Fear is fear.

Sadness is sadness

Worry is worry.

Heartbreak is heartbreak.

There is absolutely NO need to quantify, no need to measure anyone's pain against someone else's.

So please don't feel the need to quantify and compare.

Pain is pain.

Period!

I do not believe it is disrespectful or insensitive to tell me about your personal crapfest. And, I may cry with you...and that's okay, I would have done that before this cANCER mess so I'll probably do it now.

I feel isolated and shut out and like I'm a bad friend when I am not a part of your lives, even the bad stuff, and even with my crapfest.

So stop making me feel worse about myself by not sharing!! ;)  LOL!!

My heart is big enough to handle your happiness too.  Yes...it really is.  So when you become pregnant, your child reaches a major milestone, you get a new job, you are going to Hawaii...whatever it is... (and those are all made up as I type but if you are going to Hawaii...I want to go in your suitcase please) :)

I can take it!

I can actually be happy for you, even on my really crappy days.  I WANT to be happy for you and I want to celebrate with you. I need things to smile about also!

Just treat me like you did before the new diagnosis. I'm still me. I have another round on the roller coaster from hell but being friends, sharing your lives...gives me a brief moment on the roller coaster of straight, slow track where I can focus on something other than when the next big dip is coming that is going to make me throw up.

All of us have friends who go through hard times. The best advice is ASK your friend how they want to be treated...do they want to hear your stuff or not...

and for those of you who didn't ask me, but heard it anyway...now you know! :)

My friends are my family. I love you all and we will get through my roller coaster and your roller coasters by being there for each other.

It's what friendship is all about.

Love you!
Deliece

Renewing a Driver's License 101...

So I got a card in the mail two days ago notifying me that I needed to renew my driver's license.

I was afraid. Very afraid.

The news has been covering this ridiculously inefficient system  and the long waits it has produced for several months now after the State of Kansas put in this brand new "whoopty doo awesome" system.  It has been a complete cluster.

Awesome! Couldn't WAIT to go!

My license doesn't expire until October but I learned long ago with this cANCER mess, you do stuff now because later might be a different situation when you CAN'T go.

That, and I'm a type A personality. I cannot STAND to have things on my "to do list".  ;)

Okay, okay.... to be completely honest, you have to bring the little postcard they send you in order to renew and I was certain that I would not be able to keep track of it for that long. :)  And I had no idea what they would do if I lost it...I think that's an automatic "go to jail" penalty. LOL!

I was supposed to bring the postcard (that was mailed to me by the State with my address on the front), my old driver's license, money to pay the fee, and proof of residency---which could be a piece of mail that had my address on it from a government agency.

Hmmm...seemed redundant because the government mailed me the postcard I was supposed to bring....

?????????

I followed the rules and found my vehicle registration paperwork and had it in my purse ready to go to show proof of residency for fear of it being like hitting the wrong spot on Chutes and Ladders and sliding all the way back to the beginning...or hitting "go to jail" in Monopoly...well the old Monopoly...I hear the new one doesn't have that any more.  Because why again??? It's a freaking GAME...not real life... SHEESH people, stop getting your undies in a bunch over going to fictitious jail in a BOARD GAME!!!

Insert eye roll and sigh...

Meanwhile, back to the DL Bureau, part of our "new system" is an online login system that allows you to save your spot in line and then you just go to the DL Bureau at your designated time.

Slick!

SO the system opens at 7:00 am. Tuesday morning, I logged in at 7:10 and it was going to be a 5 hour 11 minute wait.

WOW!!

That wait line filled up fast!!

Five hours later wasn't going to land at a time that I could be there so I decided to login FIRST THING this morning.

At 6:58, I started trying...kept pushing refresh every 10 seconds or so.

I got in just as it "opened" online at 7:00...the wait time was already 1 hour and 36 minutes.

Seems like I'm not the only one who learned a lesson...the people who got  in line on Tuesday probably figured it out on Friday when they missed it (they are closed on Monday)...and all of us Tuesday losers figured it out for Wednesday...

The computer screen said they would text me when I was first in line.

(it is several hours after I left the driver's license bureau and I still have not received a text to tell me I'm next in line...note to self, don't rely on that system). ;)

Okee doke...I'm on it...8:36.

Actually, I figured I better be there a little early in case they called my number and I wasn't there and I got bumped out of line and had to wait 7 hours because "I snoozed and I loozed".

SO.....Brian took the boys to school for me so I could make it a few minutes early.

You know...in the event they were running ahead of schedule.

BWAHHAHHHAHHHAHHAAAAAAAAAAAAAAA!

I walked in and it wasn't busy at all!! Just a few people sitting in a sea of chairs.

AWESOME!!  Maybe I WILL get in early?

BWAHHAHHHAHHHAHHAAAAAAAAAAAAAAA!  Again...

I then noticed the scrolling monitor, I found my number and I had a 32 minute wait. No biggie...at least I hadn't missed it.

Then I hear this electronic "ding" and a voice say, "Now serving number "1234" at desk 2".

It was an annoying announcement system. That pseudo-sweet voice and that damn ding every minute or so. I wanted to find the electronic voice and smack the crap out of it! :)  It was the same calm voice that I remember hearing Nurse Ratchett from "One Flew Over The Cuckoo's Nest" use at med time.

I was wishing it was med time....or maybe mimosa time.

I also took note that there were 9 desks...only four are actually manned with employees.

Now I'm no Einstein....

But it would seem that when the news has done multiple stories about how inefficient the driver's license bureau is with this "new system" the state is using, you have a 5 hour wait if you log on 10 minutes after the system opens, and before 9:00 AM, every person who entered to sign in in person was being told they had reached their max of people they can handle for the day and they would have to come back the next day...or whenever... you MIGHT want to look at the system...

and fix it...

Perhaps even man all 9 of those desks???

Just a thought...  :)

I'm sure it's all funding related but really....

People take off work, rearrange family schedules and then have to do it again because only 4 desks are open?

I guess "open" is a relative term.

I need a job like that...one that makes no apologies just tells you that you are too late to get in two hours after opening.

I felt the worst for the elderly couples who clearly did not understand how to log in on the computer to save a spot, had gotten all gussied up to come into town and had to go home. You could FEEL the confusion on their faces as they sought to understand what they had to do in order to get in tomorrow...

And I felt sorry for the Driver's License Bureau lady who had to tell each and every one of them that they were too late...unless today was their birthday, she could have them file for a 45 day extension in that event.

She did not receive a lot of love and appreciation.

I understand that.

But it wasn't HER fault...she was the messenger for a broken (and stupid) system.  I made a note that I would not be applying to work at the DL Bureau anytime soon.  Parts of her butt were being bit off with every person she turned away and the ones that remained silent shot daggers with their eyes.

Again...perhaps manning those 9 desks would help?? I'm thinking like 100 desks...that ought to do it. :)

Finally, my number was called and proceeded to desk 7.

I kept telling myself to just SHUT UP until I got my license in my hands...just SHUT UP!!!

She asked for my postcard...good girl, I had it...and I handed her my driver's license...yay me.  I waited to see what she would do for proof of residency. She just asked if my address was the same as it was on the postcard, I said yes and she just kept going through the list of stuff we had to do to get the license.

AHA!!!!

SO the little yellow postcard DOES work for proof of residency!!!?

But why would they make such a big deal about "proof of residency"...  Reminded myself to just SHUT UP until I had the license in my hand.

That was hard for me to do. ;)

Then I noticed an Hispanic family a few desks down from me. I noticed them because I could see the flailing arms of the lady at their desk and I could hear her getting louder and louder.

She kept explaining about "proof of residency" and the yellow postcard.  From the conversation, which I was NOT trying to overhear a half mile away from them but couldn't miss due to the volume, they didn't have their card or proof of residency. I was actually glad to hear that because if they had their yellow card but had to provide proof when I didn't have to with MY yellow card and no proof, I was going to be pissed.

Whew...

But when they didn't understand what she was saying, she got louder...and louder...and louder...

Again, I'm no Einstein....

but YELLING in English to someone who doesn't understand much English is PROBABLY not going to make them understand English.

Somebody stepped in and helped and they nodded and left....

Guess they get to come back and try it again tomorrow with all the others who got turned away. I felt so bad for them!

My attention was drawn back to my desk lady when she asked me if the information on my current license was still correct...that included height and weight...

(Damnit, this was the part I wasn't looking forward to because last time I got my license I had stretched the truth as well so I'm like two weight gains into a weight listed on my license).

In my defense, maybe I will lose those 3 pounds...and if I lost 4, I would actually weigh LESS than what was listed on my license...then what? I'm NOT going back to this ridiculous line to make my weight a pound less....well...maybe five pounds less but not ONE. ;)

SO I nodded in affirmation that it was...

'ish...

I'm not proud of it. But it was necessary to avoid that long line again when I lose those four pounds. LOL!

I'm just trying to help the government out!

So we got done, I smiled for the camera, and she clipped my old license and handed me a paper printout and told me my real license would come in 60 days in the mail.

Damn....I wasn't in the clear yet to open my mouth, but even though I didn't have the actual license in my hand, I had to ask.

"So...I'm curious...why ask for proof of residency if the yellow card words for proof of residency since it was mailed to me at my address by a government agency?"

She smiled and said it was because some people go online and change their addresses to update it and any change of address would have to be verified.

I saw a lot of holes in that, but I didn't have the actual license in my hand so I shut up, thanked her and walked away.

And as I was walking away, a couple pushing a baby stroller stepped out in front of me. The wife said, "So...did you miss it..did they call you when we weren't here?"

The husband shook his head yes and said they had to go over to another desk to figure out what to do now.

The f-bomb may have been spoken by the mom...a few times.

I giggled and the mom turned around to apologize...

I told her I wasn't offended...

I understood.

Completely!

I am now heading for that mimosa.

First day...

On Thursday, Braden went to his first day of third grade.

TAKE THAT cANCER!!

He was SO very happy to see all of his friends again. He has gone to school with most of these kiddoes since kindergarten and they are just AMAZING!!

I once wrote about how one day we were at the park and a little girl who didn't know him asked her mom what was wrong with Braden when he spoke to her.

Because of his autism, his language is quite delayed (but I still think he's awfully sweet and cute).

I was very taken back by that reaction because the kids he goes to school with are the exact opposite of that. They embrace him, love him, and help take care of him.

His classmates and friends go out of their way to include him in things and to help cue him to participate. I really cannot adequately describe to you the admiration I have for each of these children.

Many people could learn a great deal from them. They care and love openly and completely just because they do...not because anyone rewards them for doing so, not because they are being paid to do it, not because they are getting any recognition...just because they care.

Ummm...that's pretty amazing, remember they are only 8 years old...and his preschool peers did the same when they were 3.

Yup...we could ALL learn a lot from them!

His classmates and friends are simply the kind of people I want to be like.  Selfless, kind, and beautifully caring.  Their families are the same way...seems like the apples don't fall far from the trees. :)

Then there are the teachers.

They ROCK!

He has some very special grown ups that he loves more than words can explain at that school. Each and every teacher he has ever had is now a part of his heart. He remembers each of them and comes running into their arms every single time he seems them. And he talks about his Principal every day too! And the secretaries (and the turtles in the office) and the custodian...adores them all!

He always has an aide with him during the day and those ladies are so special to us. He adores them as much as he loves us. They are family.  He asks for them every single day. He is absolutely, positively in love with them.  He has two new ladies joining his "family" this year and we are so excited to have them aboard as well!

Sooooo....when it was time to go back to school for the first day, he was excited and happy. He was pretty much giggling the entire morning while listing each and every person he was going to hug.

He could not have been happier when he walked into that building. You could FEEL he love he has for everyone in that school.

And..it is contagious.


While it was one of Braden's "best days ever", it was a hard day for mom.  I was SO very happy to see him beaming and exploding with excitement for his first day of school. I had tears when he saw two of his best friends and hugged them so hard I was afraid he might choke them! :)

I was so happy for him...

So grateful for the day...

Humbled that he GOT a first day of third grade...

In awe of God's grace for this gift...

And so very sad that it might be his last first day ever.

Remember, I'm a hopeful realist. I don't kid myself about what his cancer brings and I understand the reality, odds, and future we are all facing, but I am following Braden's lead and trying to just keep smiling.

He's still fighting...We are still fighting...we haven't given up and we do believe in miracles...

Right now you would have NO idea anything was wrong with him...other than he gets tired quicker thanks to the chemo.

That is no small gift. It is HUGE!!! We are still getting good time.

The mds had not progressed before he began his shots of chemo...that is the biggest blessing ever!! We have HOPE that the shots can keep it slowed down and buy us more quality time before he has to have a bone marrow transplant with donor cells.

That is frightening...it may not work, he may die during transplant, he may have horrific long term damage/effects from the chemo used for transplant when so many of his body systems are already compromised due to 5.5 years of treatment, or the neuroblastoma may come back if his OWN cells (which we will kill off) have developed an immune system that is keeping dormant cells quiet (and then we are in BIG trouble with the neuroblastoma)...

It's not an ideal situation with MANY bad things that could happen...

BUT...

It might work.

And it could CURE him once again.

That was not what we were originally told...no hope is what we were originally told, but our Doctors kept digging and researching and fighting.

And, yet again, we have been given a small glimmer of hope in what was a completely dark tunnel.

I cannot even wrap my head around how tremendous this blessing really is...

It's a glimmer...but WE HAVE A GLIMMER!!!

Thank you Lord!!

We are going to need another miracle.

It's that simple, it is going to take a miracle if he is going to survive to see his first day of fourth grade.

AND...

I believe in miracles!

Because I live with one.  Four years ago, they told us there was no known cure for his relapsing neuroblastoma but he's been in a second remission for 2.5 years.

So I managed to hold my tears back on Thursday...barely...and I had to make a quick, rude, and embarassing exit to get out of the school before I lost it, but I did it. Mostly. A few tears may have escaped...

cANCER didn't get that first.

Braden did.

We did.

His beautiful friends did.

His teachers, aides, and Principal did.

TAKE THAT cANCER!!!

He WON!!!

and cANCER lost!

A Year Of HOPE...

A few years ago, my friends Jenny and Vernet were over at my house for a foundation meeting about our first Hope Gala.

Vernet is the wife of then Director Of Pro Personnel, Ray Farmer for the Kansas City Chiefs. Ray is now the Assistant General Manager of the Cleveland Browns. AMAZING family and wonderful people!

Well...Jenny (who is equally amazing) told Vernet that her dad, Paul Bennett, had thought of doing a calendar with 12 Kansas City kids fighting cancer and 12 Chiefs Players...and she wondered if Vernet thought we could do something like that.

Vernet is fearless...and has limitless positivity and energy and she said, "oh yea...we can do that!"

Well, a few months later, we had a calendar with 12 local kids and 12 KC Chiefs players...starting players. The Chiefs were unable to commit as an organization but they said it was fine if we did it with their players.  And we did.  Thanks to Vernet and Yolanda Miles-Waters (Brian Waters wife) who reached out to their friends, and their friends asked their hubbies to do it.  Everyone graciously said yes! INCREDIBLE!

Since then, we have been working directly with the Kansas City professional Sports teams and have been completely overwhelmed by their generosity and good will for our children with cancer.

We sell the calendars for $10 each and all proceeds go directly to the foundation to raise awareness and fund our $100,000 research grants to find targeted treatments for our children with cancer.

This year, we are doing two calendars for the first time.  Sporting KC, our local soccer organization, has a particular interest in helping people with cancer, especially our children! We shot that calendar at Sporting Park earlier in the year and it was just wonderful. Absolutely UNREAL!!

Yesterday, we shot our calendar with the KC Royals at Kauffman Stadium. And again, it was unreal!!

Twelve kiddoes, Garrett, Olivia, Ava, Claire, Tianna, Cade, Braden, Gabriel, Trey, Lexis, Stewart, and Lauren were paired with twelve equally amazing players Moustakas, Butler, Hosmer, Gordon, Escobar, Dyson, Collins, Smith, Crow, Guthrie, and Holland.

The photos are absolutely magical thanks to DeCloud Studios and two photographers from the KC Royals.

Jenny Weber from DeCloud Studios who has designed our calendars since the beginning has outdone herself this year. She had a 24 hour deadline from the time the photo shoot ended until she submits it to the printer to have it in hand for the release of the calendars during a Royals Game on September 7. She has pulled an all-nighter to make it happen. She really is incredibly talented but so very caring. It is very obvious that Jenny and the staff at DeCloud Studios cares about our kids. That is certainly evidenced by her willingness to work 24 hours straight on this to have it ready on time! AMAZING!!!

Braden was able to make this photo shoot and he is traditionally on the cover of the calendar. I won't lie. It was pretty tough to do this photo shoot because I fully realize it is likely his last.  It was very hard and there were a few moments when I had to go in the bathroom to have a cry and then return.

I usually spend a lot more time with the other families and get a chance to visit with them. I didn't get a chance because Kauffman Stadium is HUGE and we were spread out and I wanted to make sure I was at Braden's photo shoot...sometimes I miss it.  I didn't like missing those kiddoes but I did get a chance to at least say hi to everyone! Those kids were absolutely amazing and soooo cute!! We are so lucky to know so many wonderful people!!

We had no idea who the players would be and which kiddoes they would be paired with until the morning of the photo shoot.

Braden was paired with Billy Butler, our designated hitter, and it was SOOO much fun!! He was SUCH a great guy and Braden had a blast with him.  We have lots of pictures from my phone! :)

And as the afternoon went on, Braden got to meet several other players...Hosmer (who is on his Royals shirt), Moose, and Escobar (who I hear was VERY sweet to him and even his mom and wife came over to meet him....WOW).

And B got to hang out with his ladies...these are some of the most important people in his life!! :)  And he gave them all kisses! :)

We had planned for Braden to be on the cover with....get ready for it...GEORGE BRETT!! Yes...THE George Brett.  Mr. Brett had agreed to do the front cover with Braden and the back cover with all of the heroes.

HOLY MOLY!!!

Braden has no idea who George Brett is...but we all did. :)  George Brett is one of Brian's childhood heroes and Brian was pretty excited to meet him. They got to talk for quite a bit. When Mr. Brett asked him if he was ready to go take pictures with him, Braden said, "nope!" (he's not a fan of the whole picture taking thing...all he wanted to do was go play golf at the Little K) ;)

We walked out to centerfield to take the photos for the cover and the whole way, Mr. Brett was talking to Braden and playing with him. Once out there, he helped Braden learn the right batting stance (are you even serious...BEST BATTING COACH EVER!!)

And Sluggerr came out too.  If you aren't a Royals fan, that's our mascot.

Braden LOVES Sluggerr!!

Well...Braden is doing his stance with George Brett and he sees Sluggerr and yells, "SLUGGERR!! I WANT TO GIVE A HUG!!!!!!"

He didn't run away into his arms but I was worried...I figure it's not great to ditch George Brett for Sluggerr...BUT I was wrong...

Mr. Brett stopped and took Braden OVER to Sluggerr to give him a hug.

NO WAYYYYYY!!!

How cool is that??

He was just so very sweet with Braden at every turn and Braden clearly liked him. Braden doesn't fake it...if he isn't into you, he isn't into you. But...we was certainly into George Brett!! :)  Okay and Billy and Hos and Moose and Escobar....  (still pinching myself)

It was a priceless day but no picture was more priceless than this one.

To me, it screams "TAKE THAT cANCER" because no matter WHAT happens in the future...cANCER didn't get today and it didn't get this precious memory.

Here are few more pictures from the day...it was absolutely the most incredible experience EVER!!

TAKE THAT cANCER!! 

YOU LOSE AND WE WIN!!!!!

Check out the Crown! :)

Courtesy of the Royals

The whole group...BRAVE, TOUGH Heroes with George Brett

Mr. Escobar, who gave his hat to his hero Tianna...how cool is that?

Billy Butler signig a baseball for Braden

Sluggerr with Braden and his buddy Cade (who went through treatment same time as B)

HOSMER!! :)

Umm...cool!! :)

With Billy Butler

This is our hero, Garret with Moose...I just love this pic! 

Laughing with George Brett!

Bear Hug for Billy Butler!

Brian talking to Mr. Brett...so cool!!

It was an amazing day thanks to the KC Royals and Thirteen AMAZING, KIND, and GENEROUS players!! 

They gave our families something cANCER can never take away...a detour with memories for generations!!

TAKE THAT cANCER!

(And calendars will be available on September 7 on our website www.BradensHope.org and at the Team Store at Kauffman Stadium for $10 each. All proceeds to raise awareness for childhood cancer and fund our $100,000 research grants for targeted treatments of childhood cancer to give our children hope for a future.)

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!!!

Dear cANCER...

Dear cANCER,

There are a few things I would love to say to you.

Most of which I can't type here because it would involve the use of extremely bad four letter words, and very descriptive verbs.

So I will type the things I would like to say to you instead. :)

(I'll warn anyone else reading this that there is a lot of inappropriate language because I'm as angry as I've ever been, but I won't use the words to the degree that I would like to use them. My besties will back me up on that one! ;) )

So cancer,  you first began trying to destroy our lives personally when I was 18 and I watched my mom die from brain cancer. You forced me to change her diapers, hold her through seizures, and watch the fear and sadness in her eyes. My mother had fire and fight and you hit her so hard she couldn't speak but my dad and I could read her thoughts through her eyes and the way she looked at us.

The unspoken was spoken.

You didn't stop her from communicating with us. You didn't stop us from loving her or her from loving us.

We made it through all of that.  I've lived a life that I think mom would be proud of if she was still here.

Okay...she would probably not be proud of all of the stuff I've done :)  ...but she would be proud of MOST of the stuff!! :)

You didn't paralyze me with sadness and depression. My heart was broken, but not destroyed. I picked myself back up and found a way to go on. I think about her every single day and I talk to her as though she was here.

Mostly in my head because people look at me like I'm bat shit crazy if I do it out loud.

(And...there's a good chance I AM actually bat shit crazy...so that one isn't far off the mark.) :)

Then you gave my dad prostate cancer, but he won.  My gentle, sweet, kind, father with infinite patience and love.

As Zach would say, "ohhhhhhhhh...poned you"!

In 2007, you decided to attack our three year old son with a form of cancer for which he had 30% odds. neuroblastoma.

And we began living our lives as if today was the last day we would get. We made the most of every single minute and detoured EVERY day.

And he didn't just kick your ass...he ground your ass up and walked all over it!

So you decided to come back with a vengeance and give him "no known cure" in 2009.

And this time, he didn't just grind up you and walk all over you...he obliterated you. And was living life happily and to the fullest.

FOUR years of additional time to date...yup...FOUR years...so kiss my ass.  You didn't get that time..HE did and WE did and every person who loves him did.

You can NEVER take that away from him no matter WHAT you do...YOU LOSE!!!!!

Then you figured it would be funny to try to fight me directly with breast cancer in January of 2010.

PSSSSSHHHHHH...nice try bitch.  I relished that fight. I prayed for the fight. Every round of chemo I looked at my chemo bags and said, "BRING IT"!

You failed miserably....and I mean miserably... I sort of felt sorry for you because you didn't stand a chance so why you picked that battle, I have no idea. I'm too angry and too sick of you...there was NO way you were winning.

PERIOD.

But Braden....you just keep the punches rolling don't you, you horrible disease.

We knew it was a risk to try to fight you that time. We knew we were probably trading long term survival for short term, but Braden is a fighter and he wanted to live. And he DID!

You LOST...

SO you decided he should have to face another cANCER...mds (the pre-leukemia you gave him). And the doctors have told us several weeks to a few months until he dies.

I believe there are a few things you have forgotten about.

History for one.

Hope for another.

The power of an army's thoughts and prayers.

And...the fact that Braden Hofen has autism and doesn't even know you exist. He thinks everyone has tubies and gets poked and goes to the hospital to get poison dripped in their veins. He thinks everyone feels like shit most of the time.

Not only does he kick you ass every single time you try to kill him...he doesn't fear you!!!

He doesn't even know you exist so you don't get a single ounce of his thoughts and emotions.

HE JUST KEEPS LIVING!!!! And he doesn't give you ONE SECOND of consideration!!

TAKE THAT!!!

Yesterday, he went to a water park with Zach and me for 8 hours...8 HOURS and guess what...when we got home he was running through the house playing with his friends and then refused to go to sleep after we all crashed because he was NOT tired.

Yea...not kidding...

...seems like he is kicking your ass yet again!

I continue to hear from families of children who have fought mds and there are stories of hope out there. Robin Roberts just won an award for courage and she had the same damn thing you gave Braden...yet there she is standing on a stage, looking like Cinderella, accepting an award and telling the world how she kicked your ass.

Thanks to you, there is an entire legion of people hoping, praying, and sending love to our son and family.

Yup....you are responsible for recruiting thousands of people to send POSITIVE, HOPEFUL, vibes and prayers to us.

Thank you!

Guess that one backfired on you, didn't it...

The amount of goodness, kindness, mercy, faith, and love that has been shown to us in the past 5.5 years...especially the past 2 weeks is beyond description. Simply beyond description.

You've been responsible for the deaths of many of our friends, many of Braden's playmates and we despise you more than words can say. I won't say we hate you because I do NOT like that word.

Hate is the reason behind lynchings, death camps, and Matthew Shepherd dying on a fence.

Hate is something you will NEVER get from me.  EVER!!!

I think it's what you want from me...I think you want me to join your legion of evil through hatred and immovable depression.

It's not going to work.

We have something far stronger than you...far stronger than evil...far stronger than hatred.

We have an 8 year old with endless hope and love showing us how to live life.

And we have God.

No way you win. No matter what happens to Braden and with his disease, YOU will never win.

God will save him. He may have to do it in Heaven...but God will save him and give him eternal life.

I've found my "sea legs" and I'm back. You didn't hold me down for long. I'm ready to fight you with every ounce of my being.

Ironically, I found my sea legs at a water park while rafting down a raging river.... :)

You are NOT going to win without a fight from us.

And of all of us,

you should be the most afraid of the 8 year old you are attacking.

He's a child without sin, he is pure, he doesn't even know how to dislike or be mean or hurt others..it's simply not in his ability to do because of his autism.

He is happy.

He is a fighter.

And oh baby...you are going to get one hell of a fight this time.

The doctors said he wouldn't get the past 4 years.

They didn't know Braden.

And obviously...you STILL don't know Braden...

...His army....

...and our God.

So kiss my ass cANCER....you will NEVER...I repeat NEVER win.

We are coming for you so you better bring your A-Game.

HOPE,

FIGHT,

LOVE,

AND FAITH...

The combo you cannot defeat.

TAKE THAT cANCER!!!