#TakingItBack2015

I've been quiet for a bit and haven't blogged.

To be honest, I've been trying to figure my life out.

For the past (almost) 8 years, my life has been nothing but a mission to fight cancer and save Braden.

We know we are never out of the woods, we know that both of our teams in KC and Philly have never seen a child with secondary MDS post relapsed neuroblastoma survive for 5 years, but as of right now... for today...

Braden is in remission from both cancers....

all thanks to the bone marrow donation his brother, Zach, gave him to try to save his life.

My life has been completely consumed by fighting cancer since December 28, 2007.

I dream about it, I spend my days and nights on the computer researching it, and my sole mission is to obliterate it.

No one should ever hear the words, "No Known Cure".

Period.

And for the first time in nearly 8 years, we are not in active treatment.

Seriously.

He's been actively fighting cancer for that long.

And now I find myself at a bit of a loss; trying to figure out what our new normal is and how I can trust it might stay this way for a bit.

Since Braden's initial diagnosis, I have felt like Wile E. Coyote, waiting for the anvil to drop yet again and our world to once more be destroyed. It happened so many times that eventually you actually do begin to act like that crazy coyote and you just hold up a sign that says, "Not Again" while you fall into the canyon of the next crapfest.

Braden's Hope For Childhood Cancer, our non profit, has been my sanity. Through it my friends and I have been able to help hundreds of children and bring hope to them through research and awareness.

It has kept me positive and given me a purpose and made me feel like even if we didn't beat Braden's cancer, we might be able to beat it for another family.

And there is a great deal of peace in that.

But now that things have "normalized" a bit at home, I find myself wanting a life for me again.  Before all of this crapfest, I had a life. I had a career that I loved very much. I actually didn't realize how much of my own self identity and self worth was wrapped up into my career, but it was.

And once that was gone, I had a hole and an emptiness. I didn't leave it voluntarily, it was ripped from me by cANCER.

I miss it. And I loathe cANCER for taking it from me.

Yet at the same time, I am very fulfilled in my role as mom and President of Braden's Hope. However, I yearn for my own self identity. I know, that sounds contradictory and a little crazy; I'm not explaining it very well...

I want back what cANCER stole from me. I want my life back.

Now that Braden is one year post transplant, and the vast majority of relapses occur in the first 12 months, I have my sea legs back again. I'm scared to stand on them because they always seem to get cut off when I try, but I'm going to take my mom's advice from when I was a little girl and was showing quarter horses.

"If you get bucked off, you get right back up and on that saddle and show your horse that you are in control and you are not afraid, even if you are. If he knows you are scared, he will always be in control and he will just keep bucking you off..."

Well I am afraid. I'm terrified to try to take my life back and rebuild it from scratch because the anvil always seems to fall again and it's absolutely devastating when you just climb out of the sludge only to be kicked back into it.

But I am going to get back up on the saddle again.

On July 6, I celebrated my 5 year cancerversary and I am now officially a "cANCER Survivor"!

So now, I'm taking my life back and cANCER doesn't get to be in control any longer. It has taken quite enough from me and I am over it.

Momma is back, with new hope and I am now including the word, "future" in my vocabulary. That's a pretty big deal and something I never thought I would do again in my lifetime.

So stay tuned for all of continued #TakeThatcANCER moments and new  #TakingItBack2015 moments.

Get ready cANCER....you lost and I'm about to rub salt in that wound every day for the rest of my life! ;)

We are taking it back and cANCER is now powerless.

TAKE THAT cANCER!!

Faith...

Most of us have had to make choices that are very difficult.

Some of us have had to make choices that were impossible.

We have one of those impossible choices to make right now.

Braden's secondary cancer (mds leukemia) that was caused by the harsh treatments he endured to beat his first cancer (neuroblastoma) is going to kill him if we don't do a bone marrow transplant...and that could kill him. And if the transplant works and rids his body of the mds, his immune system that may be responsible for keeping any dormant neuroblastoma cells quiet may then allow the neuroblastoma to come back. And that would kill him. 

It's a choice in which, like so many parents of children with cancer, we have to make an impossible decision about life and death.  

Does he die after he's had the most amount of good quality time without further risky treatments, or do we risk things and hope to not kill him, shorten his life, or take away the quality of the time he has left with the risky treatments by fighting for a cure...

This beautiful,vibrant, happy boy.

We have been fighting this mds since he was diagnosed on July 8 and we were told that he had only several weeks to a few months to live. We had to make the choice to either do nothing and let him die then or try a chemotherapy that we inject into him at home for seven days, two to three shots a day every three weeks.

Every time we have been told Braden was going to die, we have take the option that gives him a chance to live. 

And we have faith that God will be there for us no matter what the result of the treatment.

Now we have to do something different for his mds. We have known this path isn't curative and would only buy us time and now we see signs that we need to proceed with transplant if Braden is going survive.

We have chosen the only path for treating his mds that allows him even a small chance of beating it all and surviving.  Braden will have a bone marrow transplant and we will hope that he survives it, it kills all the leukemia, his donor cells engraft, and the neuroblastoma stays quiet.

Imagine being at the top of a jagged cliff and knowing you are going to die very soon if you don't jump and take a chance at surviving.  You know that whatever way you jump, there are rocks surrounding you that are not going to give a safe landing.  There are just a few green, softer spots (and even those softer spots aren't particularly appealing). 

But WE are not going to jump.  

We have to throw our child off that cliff...

and we can't make the jump with him. 

We have to hope our aim somehow lands him in the exact right place at the exact right time so he will recover and survive. 

We know no matter what, he will not land unscathed, it's a matter of trying to choose the spot that will do the least amount of harm and give the most hope for recovery and survival.

We know transplant will cause harm and will have side effects that will last the rest of his life. We don't know how devastating and debilitating those side effects are going to be though. 

That is a lot to wrestle with in your heart and mind.

Imagine, for a minute, throwing your child off that cliff hoping to do the least amount of harm while giving him a chance.

Imagine being forced to make a choice like that with your child.

It sucks as much as you are thinking, especially when it's not a hypothetical question.

We can only hope, trust...

and have I have unending FAITH that God is there and will give us the right answer to our prayers...

even if it's not the answer we want.

That is a very hard thing to do.

God gives me peace and my hope, my faith and my trust are bigger than that jagged cliff. 

My God is greater than that cliff and His love surpasses all the danger and fear.

We are fighting like crazy to keep Braden here with us. Make no mistake...we are NOT ready to let him go!

I've held on to my faith since his terminal prognosis in July. And this past week, we learned some very unexpected news that made that teeny tiny glimmer of hope we have held onto just a little brighter.

The doctors told us that Braden is in a very unique situation and he has a few things going for him.  

And the words "a few things going for him" were unexpected and glorious to hear . 

First, his neuroblastoma has been in a second remission for three years. That is nearly unheard of with relapsing neuroblastoma.

Secondly, his mds is currently only affecting about 2% of his cells and because that is fewer cells to have to kill and it has responded to therapy. He began at about 20% of his cells so the chemo has been working. It is encouraging this the cancer responded to the chemo and it's better that he has less disease to fight with transplant.

Third, after 6 years of continuous cancer treatment, Braden's organ function is good. That's pretty amazing. He has a few treatment induced health issues but his organs are functioning in acceptable ways.

Then there's a huge positive. Braden has one and only one bone marrow match in the registry. And his bone marrow match is his ten year old brother, Zach.

That gives him a "related bone marrow donor". And it's a huge advantage.

There are multiple benefits to having a bone marrow donor that is a sibling, simply put it can make the engraftment process easier and cause less complications and side effects.

It only happens 25% of the time that a sibling is the match for a patient.

And on Friday, we learned that Zach is a FULL MATCH for Braden...and that is really good news.

Zach is excited to try to save his brother's life.

And we are blessed to have a ten year old who is brave enough to try. It may not work, his cells may not engraft and even if they do the rate for relapse of mds post transplant is extremely high, but knowing all of that, Zach is willing to try.

Zach is a pretty awesome kid!

So while we are standing on that cliff with really crappy choices to make, we have some new hope...

....all thanks to faith that God will guide Braden to a softer green spot on that jagged cliff.

Please hope with us and believe all things are possible!

“Never be afraid to trust an unknown future to a known God.” 

--Corrie ten Boom

Kindness...

Each year since 2008, Santa Claus has appeared at our doorstep ringing our doorbell one night in December.

And there's a huge group of jolly friends with candles lit singing Christmas Carols with him.

6 years...

and counting. :)

And each year I get tears as they sing.

The feeling of being cared for

and hoped for is simply beyond description.

Our friends...

neighbors...

teachers...

....adults....

children...

even some babies...

all coming together to bring joy to our sons.

It's amazing and so heart warming and my favorite night in December...well other than Christmas Eve.

We have always contended that they are our good luck charm.

Last year after the group caroled at our house, we then walked to the homes of two other families in our neighborhood who had family members facing cancer and sang for them.

It was a very cold night and the family at the last house, invited us inside to sing to them.

When we had finished our carols, the lady who was fighting cancer said she had a request...

she asked us to sing "You Are My Sunshine".

There wasn't a dry eye in that house that night.

Both of the ladies we sang to last year earned their angel wings.

What a beautiful gift we were all able to give them last year...I'm sure it is something their families remember those smiles and the collective love and hope from each of us even today.

It truly is an enveloping comfort and warmth that is given by all of those beautiful faces and voices.

This year we continued down the block to the home of another neighbor who is fighting cancer..and whose birthday was yesterday.

We completely surprised her! :) It was PRICELESS!

And then we went to the home of some neighbors who just moved in...I think they liked it....

I don't see a "for sale" sign there today anyway. :)

Doing something kind for someone else doesn't have to cost anything...bringing holiday cheer is free.

And it makes a huge difference for the spirits of the people receiving the gift.

"Kindness in words created confidence. 

Kindness in thinking creates profoundness.

Kindness in giving creates love."

--Lao Tzu

'Tis The Season...

Do something kind for someone during this season of HOPE.

A kind word...a hug...a smile...

All are infectious and all are appreciated.

Kindness is contagious.

And to all of you who have joined us over the years, 

Thank you for six years of kindness to all of you...

and here's hoping for about 60 more years. TAKE THAT cANCER!

You are OUR heroes!

Merry Christmas Everyone!

Gratitude

How many times do we complain or worry or become upset about "stuff" each and every day?

The car didn't start and we have to get some place now, the grocery store is out of our favorite potato chips that were on sale, all of those little annoying things life throws at us on numerous, inconvenient, "bad timing" occasions.

We all do it...all of us at some point...

Even me!  More often than I care to admit.

I also admit that other's negativity and ridiculousness becomes a source of amusement to me! Some things, some people, some situations are so wacky they can only call for bold, brazen, and hysterical laughter at their real insignificance.

Some people complain the majority of the time for the majority of reasons and seem to have little to say to convey gratitude. And a few "cherished" people seem to actually enjoy sharing the complaints and the fight against looking at the things that are going well in life.

For whatever reason, they enjoy the drama.

And that, honestly, make me sick...

and frustrated...

and very, very mad.

Negative things like posting on a neighborhood association site that someone's wind chimes are too loud and they bother you, which is then responded to by those in the hood who  "chime" in and defend their inalienable right to have wind chimes that make them happy.

And you can imagine the responses to that and the firestorm that was created on this site...

Again...

Wind chimes!

Yup, this is a real story...not just a hypothetical example....it's not from my neighborhood (our neighborhood is AWESOME) rather my friend, Christine's neighborhood a few years ago.

Well, Christine jumped in on the conversation and gave them our story and the story of childhood cancer and how perspective might be a good thing to have with regard to wind chimes.

She told them wind chimes really weren't something worth all of the venom they were spewing at one another...threats of lawsuits and anger frothing from their fingertips and mouths as they spoke in whispers to others outside the computer keyboard.

And it quieted 99.9% of the drama...but there was still one "small" person who decided she had to respond and again proclaim her right to fight for whatever side of the debate she was on at the time.

You can't fix crazy and selfish...you just have to remind them of perspective, offer them the exposure to their craziness and selfishness, and then leave the poison behind and walk away from that. Let them be miserable by themselves because they thrive having a platform to debate and defend their craziness and selfishness.

And then hope and pray for them that some day, they will have "enough". For my blog about that...visit http://deliecehofen.blogspot.com/2013_03_14_archive.html

Braden and I just got home from Philly where he had labs and scans. We cannot "scan" for his pre-leukemia, but we have to scan for his neuroblastoma.

This is the longest period of time he has ever been off treatment for neuroblastoma. There's nothing we can give him for that right now because he has shown he's in a second remission for over 2 years and the treatments we were doing to clean up any dormant cells cannot be given due to his treatment induced pre-leukemia.

And...the neuroblastoma has got to remain in remission if he can eventually have a bone marrow transplant (which we are delaying because it could kill him OR leave him with such debilitating effects he wouldn't have a good quality of life after).

Oh...and because if we have taught his body to have an immunity for any of the remaining cells (to keep them dormant) once we do the bone marrow transplant, the neuroblastoma will rise back up again and he will once again be faced with "no known cure".

To say I had scanxiety about this visit doesn't quite do the feeling justice. Hope exists, but it only exists if the neuroblastoma stays quiet and if the transplant works perfectly and if we have REALLY killed every single neuroblastoma cell in his body so it doesn't come back.

Not likely that is all going to align.

So we are giving him 21 shots over 7 days, every three weeks to try to slow the progression of his pre-leukemia. Again, the only cure is a bone marrow transplant.

We know that our first sign that the shots are working to slow the progression of his disease will be his platelets not getting lower...and perhaps...PERHAPS...even rising a little.

Braden's platelets (the cells that are responsible for clotting your blood) were at 64,000 when he was diagnosed with the pre-leukemia (mds).  Before round one of shots, they had fallen to 45,000 which was very scary because that could indicate progression of disease...and once it progresses such that his mds cells are at a large percentage, we have GOT to do bone marrow transplant to try to save him.

Our first stop in Philly was for labs at clinic. And Braden got to see his beloved Maggie...our nurse there. He ADORES Maggie!! And after flirting for some time, he ran into her arms, wrapped her in the tightest hug and gave her a kiss on the cheek.

Victory number one!

His platelet count (after two rounds of shots) was at 82,000!! When the sedation nurse (who I made find his counts a half hour after our clinic visit) told me and I nearly gave her the same reception Braden had given Maggie!

Victory number two!

Maybe....and perhaps we can even say "likely"...we are slowing the mds down with these shots.

That is AMAZING given Braden has had treatments for 5.5 years and his body has been through so much and his cancer cells have learned to adapt and mutate quickly to continue to grow.

The next day, we would have scans for the neuroblastoma to see if it remained quiet.

I know..there's a lot to keep track of...and each factor is a crapfest in itself. None of this is good news...it's all very bad...but we have a very small glimmer of hope at the end of the tunnel that is shining through.

And...our appointments had been on time that day and we got out of CHOP (Children's Hospital of Philadelphia) 40 minutes after our last appointment.

And THAT friends...NEVER happens!! We've waited for over 5 hours of his MIBG injection to arrive before.

Victory #3.

Now we had about 3 hours to "play" before 5:00 when everything closed.

So the afternoon we got the good platelet results, we decided to go to what Braden calls "the play room"...the Ben Franklin Institute. The Cathedral of Saints Peter and Paul is directly across Logan Square's "pretty water" from it.

It is impressive from the outside and after 4 years of traveling to Philly at least every 3 months, I had never been inside.

I decided that today...we were going in.

We walked past the row of homeless people who had an encampment beside the fence overlooking the highway. We walked past the drug dealers having an argument on the grass of Logan Square, we walked past the distraught people sitting on the benches contemplating life, we walked past the many tourists taking pictures at the fountain....

We opened the door and could immediately see into the massive worship space.

And we sat in the back pew...and my breath was just taken away by the beauty of this cathedral. It was absolutely amazing.

And I simply thanked God.

I thanked Him for our oncology teams in KC and Philly who we love beyond words, I thanked Him for platelets at 82,000. I thanked Him for time to play that afternoon, I thanked Him that we had a home to return to with our "Daddy" and "Zachy", I thanked Him that we were blessed to have friends who have helped us so we can afford to travel to Philly to get the best neuroblastoma team in the world (in my opinion) to work with us, I thanked Him for safety, and I thanked Him for all that amazed and delighted Braden like the "pretty water" and the "play room".

And we left.

I didn't even ask Him for clear scans the next day.  In all honesty, I didn't even think about it.

All I could focus on was how humbling the gifts of grace, love, and friendship are and how lucky we are.

I just thanked Him.

I prayed later for Him to continue to wrap His light and protection around Braden the next day for scans.

And Braden's scans continued to show "no evidence of disease".

Victory #4

A tremendous blessing and gift.

TREMENDOUS....

We still get to move forward...we get a green light for this next round of shots...

and we have hope that we can continue to allow Braden to live "quality time" for a bit...before the next storm hits.

We don't know what the next storm will be...

rapid progression of the mds...perhaps rapidly enough we would not get to do transplant, death by transplant or debilitating effects of transplant changing his quality of life, the neuroblastoma waking up which would disqualify him from transplant (the only cure),  transplant being successful to only be met with an immune system that is not trained to keep neuroblastoma quiet so the neuroblastoma comes back and kills him, we don't know....

Everything must align perfectly.

It's going to take a lot of hope, it's going to take a miracle...

But for now...we are just grateful for our blessings.

Each day, we get to choose how we approach life.

We choose detours...

Hope...

Love...

and Gratitude!!!

Wind chimes just don't matter!

Let them go....

And fight to live with a thankful heart for blessings that surround you.

Even in the darkest of storms...

we can find something to be grateful for....

And WE have a billion blessings to be grateful for even in the midst of our dark storm.

Most notably, a NINE year old who leads the charge and a TEN year old we love very much!

TAKE THAT cANCER!!

My friend Christine and me (my hair just started coming in after chemo) with our wind chimes a friend gave us! 

God Speaks Autism...

I've always contended that God "speaks" autism.

I knew that God knew about Braden, but I didn't know that Braden knew about God. With his autism, he doesn't understand abstract concept..things must be concrete and literal.

I knew God would protect him and that He loved him more than even I do, but my heart wanted Braden to love God as well.

Then one day years ago, when he was about to spike a fever which would have landed us in the ER again with a possible admit, I took out a special cloth that had been blessed, and placed it on Braden's head. I had never shown him the cloth but I had placed it on his abdomen frequently and prayed for his tumor there to go away.

I didn't really believe the cloth had any "magical powers", but I figured...

why not?  Can't hurt!!

Braden felt the cloth on his head and pulled it from my hand. He grasped it and without hesitation said,

"Oh...Hi God!"

I didn't even know he knew the word God.

My entire body filled with goosebumps.

And at that moment...I knew...

God speaks autism.

They have a very close relationship and they "know" each other in ways I could never understand or explain.

Braden knows and loves God.

And God "speaks" to Braden through his heart.

Well tonight, Braden was in bed. He had left his "first tiger"...his favorite of his stuff toy tigers (he now has nine for nine years old). Each is named in cardinal order.

"First Tiger" was indeed the first tiger he received.

And he NEVER sleeps or travels or has scans or goes to clinic or long car rides without "First Tiger".

First Tiger was downstairs in the exact spot he told me I would find him and as I walked back into my room I was shocked to see Braden flipping through the pages of my Bible.

My first reaction was "NO!" because I was afraid he would rip the delicate pages. So I asked him to give it to me.

He obliged, very sweetly and then I realized my mistake.

I handed the Bible back to Braden and said, "Open it honey...what page do you want to read".

He took the closed book and opened it to a page.

I then asked him to point to the words he wanted me to read.

He said, "Right here"...

The words were from Psalm 105 verse 4 and 5...

"Look to the Lord and his strength;
     seek his face always.

Remember the wonders he has done,
     his miracles, and the judgments he
          pronounced."

Those same goosebumps are back.

God speaks autism.

And tonight...God spoke to my heart through Braden...

and gave me HOPE...

Through FAITH!

TAKE THAT cANCER!

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!

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!!!

answers...

I don't have any answers yet.

We are still waiting for answers/results from Braden's bone marrow aspirates and biopsies.

And we will likely get those answers either tomorrow or Tuesday. I really suck at patience.

REALLY suck at patience...

And I have a sick stomach, worry in my heart, and a lump in my throat.

A third relapse would be devastating. Absolutely 100% devastating. And I know that there is not a thing I can do to change what the answers are going to be.

I have turned to the two things that I CAN control in an uncontrolled situation.

Dirt

and Detours.

I clean like a crazy person. I am in total control of dust and freshly lined vacuum marks in the carpet. And I am ROCKING that OUT!! :)

And we are taking detours. Braden had a rough go after his biopsy.  He was very sick yesterday morning and threw up a couple of times and needed a breathing treatment, not to mention the pain.

I asked people for prayers...and this morning he popped out of bed, walked around on his own with no grimacing and we went to the pool...we are now headed out to the arcade.

TAKE THAT cANCER!

Prayers work.

And I know we will get an answer to our prayers for this to be drug toxicity verses a third relapse in just a few hours but...

it may not be the answer we want!

It is strange to pray that it's drug toxicity because it could end up knocking him out of this trial...it's not 100% certain that it would but it is a pretty big possibility and then the thing that has likely been keeping him in remission is no longer a choice.

But that crapfest answer verses a third relapse answer is so much better...so I pray for that one.

cAncer...you stink. You really, really stink...  No one should have to hope for the lesser of the two evils.

I pray it's not a relapse. I plead for it to not be a relapse.

Please God...let him stay!!

I completely believe the reason Braden is still here today is because of the collective positive thoughts and prayers people have sent his way.

Everyone's beliefs are their own and we don't have to all believe in the same thing. I have a deeply rooted faith in God and that is how I center my energy and hope.

I think there's something to a group of people truly believing and hoping for our son no matter what your personal belief system is though. I can't tell you how many times I have literally "felt" that warmth and love from thousands around the world sending their own hope to our son.

I feel it now during these days of waiting and they not only comfort us but they encourage and somehow heal us.

IF we get bad news and it is a third relapse, there will be a "special" set of people who will begin thinking "so where is your God now Deliece? If God was such a wonderful being, wouldn't He/She save your son as you and countless others have asked? You say you are faithful and trusting but those two things really didn't seem to work out for you....your son is facing death yet again."

(People have actually said that to me before)

(...and I have thought it before...)

It's a valid question and concern.

I get it.

BUT...what I learned from Miranda's death, from watching Braden's friends die, from watching my mom die, from watching countless friends die, and being faced with "You need to spend your time well with your son because he's not going to get much more" more times than I can even count is this:

(and I'm going to sound preachy right now)

God is there.

God feels our pain and doesn't want us to hurt. I do NOT believe these things are given from God.

I do believe that there are reasons beyond my understanding that I will NEVER get in this lifetime for why things happen and why people die at certain times that seem so very unfair, wrong, and painful.

Someday, I hope I will get to Heaven and be able to get those answers.  But in the meantime, I know that God is there for me.

We may not get the answers we wanted tomorrow or Tuesday, but I know God is there and that He is answering my prayers even if I didn't get my way.

And I will try my hardest to remember that and not be angry at Him....rather to direct the anger to the one that I believe is responsible for cancer....

I do believe there are two forces in the world.  God wouldn't do this so in my heart and mind it's the other guy.

I will try...I'm still a work in progress and this is my son and when your heart is broken into a million pieces it's very hard to not blame and question.

I am trusting.

I am grateful for the time we have been given.

And I am hopeful that we will be allowed to have about 92 more years with Braden Hofen on this Earth.

100 seems like a pretty good number to shoot for.

PLEASE keep hoping, praying, trusting, and believing.

We CAN do this!!!

TAKE THAT cANCER...

That's the title of my new book...yup...a BOOK!! Unbelievable!

TAKE THAT cANCER...A Mother and Son's Journey to HOPE

Mrs. Schmeller, my high school English teacher is laughing right now. I could never get an "A" on any work I did for her...I'm pretty sure this book wouldn't be an A but it comes from my heart. :)

It's the story of our dual cancer fight, about how you have to fight with your gloves off, and about hope and faith in a God who loves us more than anything.

It's 5 years wrapped up into 110 pages. That was no easy feat...

As you can see...I like to type...words flow...too many words :)

So I had a co-author, her name is Maureen Rank and she was a gem. She helped me get things into a structure so I could feel what I really wanted to share and what really was important. I have thousands of pages of writing over the past five years and every page was important to me.

I'm not good at "thinning" :)

Once she had the format worked out, I could then write and literally feel what I wanted to say. I had no plan...I just wrote from my heart.

Hopefully, the book will give you courage and uplift you. It will probably make you shed a tear or two and I hope you fall over laughing at times too!

I expected to have a book when I was done, but I did not expect for the process to change me and help me grow. It did.

In so many ways, I feel like I have been able to wrap that package up and put it closer to a shelf. I'm not sure it will ever make the shelf...I don't think cancer fights work that way...but it is in a package, with a big bow!

Five years of battling, crying, laughing, detouring, living....

What a blessing to be able to write this book and have a story that is continuing for now!!

BLESSED!!

If you are interested in seeing the book and reading the back cover description please visit www.BradensHope.org and click merchandise. The book is $11.99 and we will ship it out to you right away for $2.00 extra per book.

If you live in Kansas City, you can pick a copy up at Outside The Box Gifts in the Rosanna Shopping Square in Overland Park 11616 Metcalf Avenue (right beside Mardel). You don't have to pay S&H that way AND we will have them for you at the HOPE Walk on June 8 at Frontier Park in Olathe. :)

They are on Amazon but if you purchase them from our website, we get to keep about twice the profit as apparently Amazon likes to have a big old share! :)

I hope you enjoy the book should you purchase one.

It feels so empowering to be able to write this story and put the past 5 years in that box...with the big bow...

TAKE THAT cANCER!! :)

Sporting KC Detour...

We had an AMAZING detour on May 14!

Our foundation, Braden's Hope For Childhood Cancer, www.bradenshope.org, and Sporting KC www.sportingkc.com hosted our photo shoot for our 2014 A Year Of HOPE Calendar! This calendar features 12 childhood cancer heroes and 12 Sporting KC stars have their pictures taken by DeCloud Studios and the resulting calendar is going to be AMAZING! It will be available in September.

(In August, we will do our photo shoot with the KC Royals and it will be available in September as well.)

This year, we are doing the photo shoots at the stadiums (WOO HOO) so we headed out to Sporting Park in Kansas City, Kansas for a day of fun.

First, I have to tell you that my friend, Jenny Grindel, did an amazing job of organizing everything. The Sporting KC contact we worked with was also absolutely incredible!

Jenny and I spent the entire morning with the photographers and in the stadium setting things up and it was rather surreal. We felt like we were welcomed as if we were in someone's home. It was simply unbelievable and very cool.

We had the BEST volunteers working that day to help with the photographers and families. They made it SO very special for everyone! We really can't thank them enough!

At about 1:00, the heroes and families got to the stadium and then the players arrived and it was a PARTY!!

I cannot adequately describe the smiles, laughter, and silliness.  It was PRICELESS!!!

And the cuteness...off the scale! The photographers got some amazing shots.

Each of the players spent quite a bit of time with the heroes and their families. Siblings were invited to be a part of the calendar shoots too because we believe that when a child gets cancer, the whole family deals with it and it's especially tough for siblings. They are ALSO our heroes! :)

And we took a family shot for them to have as well! Those won't be in the calendar but we want them to have a shot for their own use.

The players were so very gracious. They sat and talked and giggled and played with our heroes. How cool is it to be able play soccer with some of the BEST soccer players in the world on their own field??  Now THAT is a memory the kids and their families will have forever! TAKE THAT cANCER!!!

This day is about much more than just getting pictures for the calendar. It's about the EXPERIENCE!

It's about the chance to watch Graham Zusi sweetly pat the head of his little hero Calin, Aurelein Collin sweeping away the hair that the wind was blowing in Jenna's eyes, Jimmy Nielsen autographing Joseph's bald head, Seth Sinovic playing soccer with a big group of kids, CJ Sapong dancing with the heroes in the cafeteria, Benny Feilhaber sitting across the table from his heroes chatting for a long time, Chance Myers playing basketball with Ciara, Kei Kamara being so much fun and so silly that a very sweet and shy Aspen couldn't help but smile, Teal Bunbury making Isa giggle during their press interview room shoot so hard I think she had a tummy ache, Mikey Lopez making Tabby's dream come true,  Matt Besler and Isaac kicking around a ball, and Jacob Peterson taking a personal interest in his hero's talents!

The biggest smile of the day was mine because I know that as much as this meant to our families, and as much  fun as our heroes with the players...the guys had about a million times BETTER time with the kids!  And they learned about childhood cancer and WHO it affects.

And they CARE!! They honestly care about these kids!!!

THAT is what these photo shoots are about.

The calendars are a really nice thing...but I WISH I could adequately describe the fun these kids have during those shoots.  Imagine having an all access pass to personalized time with someone famous!  THAT is what these kids got thanks to the amazing generosity and kindness of Sporting KC and their players!!

I took my camera and took a few pictures and I have some pics that were posted that weren't mine and I will share them with you! I'm not a real photographer so they are not all that good but it will give you a little sneak peek at some of the faces you'll see. The REAL photos are 1,000,000,000,000 times better!

(I was also in mom role so I didn't get to every shoot and there are a lot of pics of Braden. ;)  I'll apologize now! LOL!)

This day ROCKED!! Say it with me..."TAKE THAT cANCER!!!"

And here is a video link of the shoot that Sporting KC made...it's BEAUTIFUL!! Please share it if you agree!! :)

http://www.youtube.com/watch?v=4UAX8cr0kVM