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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

overdue...

Hi Everyone,

My apologies for this very overdue update. I do a pretty good job of updating FaceBook, but I haven't done a good job of updating here.

Quiet is actually good news in this case. :)  Braden just had a clinic appointment yesterday and his labs looked good. His platelets are up to a whopping 165,000 which is the best we have ever seen. And his liver enzymes and creatinine (kidney function numbers) actually look "normal"! PTL!

He has been feeling fine and actually started fourth grade on October 26. He was so excited to get back to school to see all of his "people". He has several staff members there that he adores and has missed a LOT. And then there are his friends...oh how he has missed seeing them. Now this whole "work" thing isn't really fitting with his idea of fun, but he's getting used to it. Watching him walk into school for his first day of fourth grade after being out of school since March was pretty special. When he left, we weren't sure he was going to survive to go back, but he made it!

TAKE THAT cANCER!

Braden had his first haircut since last February on Sunday. SO awesome!! We didn't trim very much because I'm fairly convinced he's going to get his curls back again! He was beginning to have quite a stunning mullet so we trimmed the back and the "Betty Boop" sideburns.

I am missing having my sidekick with me 24/7. It's been pretty wonderful to have him with me and I really do miss taking him to the park and the arboretum and for walks. I miss all of those detours but it's time for him to be a big boy again.

We won't have a clinic visit again until after the first of the year (if all goes well) because we go to Philly for scans December 8-10. We will see both cancer teams there and do all of the scans that we dread so much. It just happens that Braden's fourth grade musical is on December 10 so he will miss that, but we will try to have a little fun while we are out there to compensate. 

It's pretty wonderful that Braden is out of isolation and can resume a more normal life. I actually wrote a blog about all of the things he has been able to do now that he is out of isolation. I'll post the link because there are pictures and you can see all of his glorious hair! :) http://deliecehofen.blogspot.com/2014_11_09_archive.html

So for now, we are good. Still worried everything could change in a minute and grateful when it doesn't.

We have HOPE and that's really more than we ever thought we would be able to say 16 months after his MDS diagnosis.

It's more than enough...it's a gift and we are so thankful.

Please keep hoping and praying!

I promise to update sooner this time.... :)  But if you ever want to check in to see how things are going or see pictures, you can always visit his FaceBook site in between. https://www.facebook.com/BradensArmy?ref=br_tf

Thank you for everything army...we are going to continue to HOPE!

Deliece 
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Comments

6 Comments

Mary Kramer
By
I am so thrilled to hear all of this exciting news, it is so wonderful that he is back in school and really enjoying all that he is getting to do. I pray that all of this good news continues to take you all through the Hollidays so he can have the best Christmas ever with all of you with him.
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Suzanne McClendon
By Your sis in Christ, Suzanne McClendon, for the McClendon Family
We continue to hope right along with you all!
Tom Baldwin
By Tom Baldwin
Well unfortunately I don't do facebook. I'm too old school. LOL! Teresa does though and she informs me of Braden updates. So glad he's back at school and getting back in the swing of things. What a living miracle. He amazes all of us! Tell him Mr.Tom, his really old(turning 50 on 11/25)PE teacher says hi and hopes to see him again soon. Love, hugs, and prayers!
Linda Kemper
By Linda Kemper
Thoughts and prayers for Braden and family!!!
Steve Georgon
By Steve Georgon
Great news!
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1 person hearted this
Tiffany Lang
By tiffany
This is fantastic news!! Congrats on enjoying it all (ok, no sane adult enjoys Chuck e cheese, but yeah on enduring it with a smile). His smiles are priceless, his hair beautiful and our hearts are bursting with the memories you all are making.
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2 people hearted this