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Braden’s Story

This site has been set up to keep friends of Braden's informed about his current treatment for neuroblastoma cancer.  Braden relapsed in August of 2009 and is currently undergoing treatments.  Please keep him in your thoughts and prayers as we need a miracle!  Thank you so much!

Braden was admitted to Children's Mercy on Friday, December 28, 2007 after a visit to the ER for abdominal pain. A chest x-ray revealed a large white shadow across most of the right side of his chest and extending partially across the left side. A CT scan determined that it was a solid mass, which doctors suspect is a Neuroblastoma, a rare tumor found in infancy and early childhood. Braden is scheduled for a surgery on Wednesday, January 2, to confirm the diagnosis, determine staging and operability of the tumor, perform a bone marrow aspiration, and implant a Hickman catheter to deliver chemotherapy drugs. At this time, the tumor is believed to be too large and too close to vital organs and blood vessels to safely remove. It is hoped that chemotherapy might halt its growth and shrink the tumor enough for it to be removed in its entirety at a later date. Braden continues to undergo testing to determine if it has spread to any other organs or to his bone marrow.

Despite being a very sick little boy, Braden is maintaining his sweet disposition, unless they take his blood pressure, which he hates. Zach is keeping the hospital room free of "bad guys" as his alter-ego Spider Man. Deliece and Brian are exhausted, but hopeful and appreciate all of your love and support.

Please, keep them in your prayers.

Update:

Braden's tumor was determined to be stage four, high risk which confirmed our worst fears. Please pass along this link and password to anyone that you think could help us pray for Braden. We believe in the power of prayer and know God ultimately has a plan in place for Braden. We are charged with making the most of every minute we have with our son! Thanks!!

11-16-08

Braden has completed all chemotherapy and an autologous bone marrow transplant. He is currently beginning the maintenance phase of his treatment and doing well. Our next scans will at the conclusion of Cis-Retnoic Acid therapy in approximately May. Please continue to keep Braden in your thoughts and prayers--he still has a very long road ahead of him but thanks to all of you, he has come a great distance in defeating this cancer. We are eternally grateful to each of you!

On 8-11-09 we learned that Braden's cancer relapsed and there is no known cure for relapsing neuroblastoma.  We were given a choice of either quitting and allowing him to die nor or continuing with treatment in the hopes of prolonging his life a bit longer. We chose to fight.  We began treatments at the Children's Hospital of Philadelphia (CHOP) and Children's Mercy in KC is doing any treatments here that can be doen from home at CHOP's direction.  Braden has had two MIBG treatments in Philadelphia as there are only 5 hospitals in the US equipped to do MIBG treatments.  It is an IV injection of a radioactive isotope that attaches to neuroblastoma cells and can kill them.  Braden's response was favorable but cancer remained.  He is currently going through chemo rounds of Irinotecan and Temodar in the hopes of killing the remaining cancer.  Please HOPE with us!  We need a miracle!

January 26, 2011, we heard the words we have prayed for since Braden's relapse...after his scans in Philly, Dr. Mosse told us that Braden's MIBG scan was completely normal and he shows no evidence of disease.  Thank you God!!  Braden went through immunotherapy and is now on ABT-751 to clean up the hidden cancer cells we believe are there. HOPE!

July 8, 2013, Braden was diagnosed with a secondary cancer called MDS. He received a bone marrow transplant on March 31, 2014 with bone marrow cells donated by his ten year old brother Zach. It is his only HOPE to beat cancer for a final time. 

Latest Journal Update

Future...

7 years ago on December 28, we stopped using the word "future".

We were told that Braden had a 30% chance of surviving his neuroblastoma diagnosis for 5 years.

Then a year and a half later, we were told there was no known cure for his relapse.

Then 17 months ago, we were told by both of our cancer teams in KC and Philly that they had never seen a child survive the particular type of secondary leukemia Braden has following a neuroblastoma diagnosis.

Future hasn't been word I have chosen to use since December 28, 2007.

It seemed a bit irrelevant...

and a whole lot sad.

While the word future isn't my favorite word, and the word past is 

well, 

emotionally conflicting...

because it's been a really rough 7 years, but he's still here.

So what do you do with equally intense amounts of gratitude and anger?

Quite a quandry.

But, every year on Braden's cancerversary, I am reminded of the grace of God and the tremendous blessing He gave us by trusting us with this very special little boy who would bring so much joy and clarity to our lives.

7 years ago everything familiar to our family was wiped out with one x-ray showing a large gray mass.

Braden was oblivious to why his world had been completely changed in every way you could imagine.

His autism requires constants, routines, and predictability.

He had none of that.

He didn't understand why everything in his life was scrambled because he doesn't even know he has cancer.

He has no concept that this isn't the way we all live.

He didn't know why people were constantly sticking him with needles and tubes,

He didn't understand why he was hooked up to machines almost 24/7 for over a year.

Why he couldn't see his friends, why he didn't live at home very many days, why he did live at the hospital,

yet he was still smiling,

and enjoying life,

while fighting to have a future.

He asks no questions about why people are stabbing him with needles, injecting him with poison, holding him down for meds.

He harbors no resentment...

anger...

fear...

doubt...

worry...

or hopelessness.

He's never wavered in his constant example of positivity,

perspective,

love,

and an immense appreciation for every single breath.

There's a life lesson there.

A life lesson I could benefit from, 

a life lesson many of us could benefit from.

All thanks to cANCER.

cANCER who thought it was getting the best of this brave knight.

We would trade every lesson for him to not have to endure all he has gone through in his short lifetime.

Sadly, it doesn't work that way.

So the best we can do is to try to live with the same happiness, appreciation, love, fight, courage,

and HOPE that Braden lives with every single minute of his life.

Anything else does nothing to honor his seven year long victory.

As of today, he's winning and cANCER is losing.

But, as we were just reminded when we went back for scans in Philly a few weeks ago,

it could all change at any moment.

It feels like we are walking over a bridge suspended by a rope that is unraveling.

And there's Braden, crossing that bridge with his smiling face, 

and the beautiful naivety that accompanies being oblivious to the unraveling rope.

Instead of worrying about the rope and its impending doom, he's happy just because he's still on the bridge.

He's focused on putting one foot in front of the other, while being joyous just to be traversing the bridge, no matter how wobbly it is or where it is headed.

I want to live like Braden.

I want to be that faithful, trusting, and grateful.

I'm a work in progress.

What I do know is that my faith in a God who didn't give this cancer to Braden and who will carry us through wherever the bridge leads us to in the future, 

is enough.

And that's all the "future" I care to consider right now.

Braden has taught me that HOPE is the key.

HOPE is the optimism and the light.

HOPE shouts "TAKE THAT cANCER".

7 years and he's STILL here!

"They" thought they knew where the bridge was leading to, and when he would reach his final destination.

"They" were wrong.  

And we keep believing and understanding that while the future is unknown and uncertain, we have today.

And today is going to be as beautiful and wonderful as we make it, regardless how shaky that bridge is on any given day.

We live for today, tomorrow isn't promised.

We live with HOPE!

Deliece







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Comments

16 Comments

Patsy Mura
By Patsy Mura
Your writing is nothing short of a gift from God. The fact that Braden is surviving is hope enough by itself, but then your writing about your journey is an additional gift. Your words help all of us to "appreciate each breath, each person, each individual journey we are on" as we, too, on our own shaky bridges. hold on to HOPE! Thank you, Deliece, for allowing others to walk with you.
Cami  Schmidt
By Cami Schmidt
Beautiful! Amazing! Hope-filled! Love you all so much.
Mary Kramer
By Mary Kramer
I PRAY FOR A VERY HAPPY NEW YEAR FOR ALL OF YOU, AND PRAYERS EVERY DAY.
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1 person hearted this
Joe & DeAnna Jordan
By Joe & DeAnna Jordan
Well said Delice, it brings a bit of humility, adventure, and hope to me as I travel through my journey called life. Ten years ago i never could have seen , and no one expected, I would be much more than a shadow (I know things will change) but today I am still here, lovin' life and today is good enough for me. God bless you each, Joe
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2 people hearted this
Sarah Nixdorf
By Sarah Nixdorf
Here's to more years. 7 years and he buried ,em all in hope, sending smiles.
Www.caringbridge.org/ visit/ sarahnixdorf
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2 people hearted this
Suzanne McClendon
By Your sis in Christ, Suzanne Gunter McClendon and Family
This is such a beautiful and inspiring mommy-heart post, Deliece. Here's hoping for 7 more years, then 7 more, then 7 more...to infinity and beyond!

You're all in our prayers. {{{Hugs}}}
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Kim Watson
By Kim Watson
Amazing and powerful words, once again you struck a chord within myself and for that I thank you. Hugs and prayers.
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2 people hearted this
Kim Watson
By Kim Watson
Amazing and powerful words, once again you struck a chord within myself and for that I thank you. Hugs and prayers.
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2 people hearted this
Betty Singleton
By Betty Singleton
Amen You are a brave mamma and I continue to pray for Braden and your whole family.
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2 people hearted this
Shirley Brogna
By Shirley Brogna
God bless him.
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2 people hearted this