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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

Being deported...

On Tuesday, May 5, Braden Hofen will be deported. And we could not be happier.

Braden has had a port a cath (port for short...I'm such a poet) since before his fifth birthday when he relapsed with neuroblastoma. Because there is no known cure for relapsed neuroblastoma, I remember one of the things I was really bummed about was that Braden would die with his port in his body. A visible and eternal reminder that cANCER was the cause. That made me sad, but mostly it made me angry because I don't want cANCER to win anything.

Braden has had numerous central lines...he had a Hickman catheter for about a year and a half, then we took it out and 3 months later when he relapsed, we had the port he has right now put into his body.  Ports and Hickman central lines are basically internal catheters that are inserted through the jugular vein and ends just above the right atrium of the heart. Ports are then accessed by pretty large needles and tubes hang from those needles that are then connected to the devices that pump the meds through their bodies. The central line delivers the meds quickly and efficiently through the entire body.

You keep a central line in your body until you are finished with your treatments. Being "deported" is a really big deal for several reasons but the biggest reason is that it signifies the end of treatment. This time, when we take the central line out, it's going to be the "real" end and we aren't going to need another one. Zach's bone marrow (Z-Force) is patrolling Braden's body now and it is on 24/7 watch for any cancer cells so cANCER doesn't stand a chance. It messed with TWO of the Hofen boys this time and now it is done! 

Pragmatically, it's a celebration because central lines can get infected and because it's hooked up pretty much directly to your heart, you can go septic from a blood infection VERY quickly. Therefore, anytime you have a fever and a central line, you must RUSH into the hospital no matter what time it is and get cultures drawn from the central line and then IV antibiotics. If you do have a central line infection, you will have 14 days of IV antibiotics in the hospital. It's ever so much fun...not.  Braden had a fever while we were traveling from KC to Phoenix, fortunately we had stopped in Amarillo for the night and we had all of his accessing supplies with us as many hospitals don't have needles the right size for kids. That was NO fun! But...we did learn that the hospitals in Texas actually have signs outside the Emergency Room doors stating that you are allowed to bring your firearms in if you would like. Not even making that up. LOL!

Well, now that the tubies are coming out, a fever can just be a fever and we won't have to rush into the ER and we can travel without supplies to access at a hospital on the road. 

Braden can now play soccer, baseball, and we won't have to guard him while he plays basketball...if he takes a direct shot to his port it can be life threatening because it's connected to his heart so you can guess what happens.... For 7 years, we have lived in fear every time he plays basketball. Now it will just be a normal fear of a mom that he's going to get hurt.

Braden will have labs drawn every 3 months, they will have to use a "straight stick" with a needle into a vein to get blood now and when he has scans every 6 months, he will have an IV like you and I would have since he doesn't have his port anymore. Again, a celebration but a strange thing to be thankful for I suppose. :) We have NEVER gone longer than a month without labs because he has to have his port flushed every 4 weeks even if he didn't have to see the doctor. We have gone to the hospital at least once a month for 7 years. Initially, we were at the hospital 2-3 times a week when we weren't living there for treatment. Now, we will only have to go to the hospital every 3 months. TAKE THAT cANCER!! 

We are super excited! I bet you guessed that already...probably because I've said it about 100 times, but it's OH SO TRUE!

We leave tomorrow for Philly and Braden is happy we get to ride on the airplane and see our friends at the hotel and hospital. Monday morning, we meet with the surgeon to discuss the surgery and recovery and then we meet with the anesthesia team. His surgery is on Tuesday but I don't have a time yet, they will give that to me on Monday and I will let you know. 

We would love it if you would join us in wearing your Braden's t-shirt or yellow or green on Tuesday. I will let you know the time of the surgery and if you could send up a prayer or positive thought at that time, I would really appreciate it. I'm actually a little nervous about this, which is one of the many reason we are going to Philly. He's had this same line for 5 years which is a long time for the same line and I'm concerned about it being a tricky procedure to get it out. If you can send him some extra prayers, that would be awesome.  He will be sore for a few days as he heals but one thing I know about Braden Hofen is that he is way too tough and I will have to be the one asking HIM to slow down. ;) 

We do still have a long journey...and typing the words "long journey" just rocks because of the word "LONG"!  BOOM BABY!  Braden has several systems that show weaknesses because of the extent of his treatment. Heart, kidneys, hearing, thyroid...several systems to follow and keep healthy so we still need your prayers just as much as you have covered him. I believe YOU and your love, faith, and HOPE are why he is here! I can never thank you enough Army! You are the best!

7 years and 5 months ago, we started this journey....

May 5, 2015, we end it.

May 5, Braden becomes the kid who had cancer, relapsed with cancer and was supposed to die, and then got a secondary cancer and was supposed to die but he beat it all and lived. I don't know why...and I don't know how (neither do the doctors), but he did and that is humbling. So humbling it brings me to my knees with tears. I don't know why we got this lucky and so many of my beautiful momma friends no longer have their babies. I admit that I have a lot of guilt about that and I know those mommas don't want me to feel that way...but I do. All I know is that I'm extremely grateful to each of you for being like Aaron and Hur and holding our arms up when we were too tired to continue. Thank you for praying, hoping, believing, and expecting a miracle. 

We will never, ever be able to go back to who we were prior to December 28, 2007.

We will never live without fear and without looking over our shoulders every minute of every day.

I will still panic every time he has a bruise because it could mean his platelets are low and that his cancer is back,
I will still panic every time he gets a fever because it could be his body trying to fight cancer,
I will still panic every time he is tired or grouchy because it could be from pain and that could mean his cancer is back,
I will still panic every time his lips don't seem as red as they usually do because it could mean his cancer is back,
I will worry because three months is a long time to go without seeing his counts to confirm things still look okay
I will worry because six months is an extremely long time to go without seeing "all clear" on his scans.

cANCER will always fight for control of me through worry and panic and fear.

I will fight back. I will look into the eyes of my hero, Braden Hofen, and I will see...
love,
faith,
courage,
joy,
and HOPE...

and I will fight because he does. 

cANCER...YOU LOSE!!!

BRADEN AND ZACH HOFEN WIN!!!

TAKE THAT!!


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Comments

14 Comments

Mary Forschbach
By
So glad that things are going well. Praying the surgery goes well & an easy recovery. Love to the entire Hofen family.
Joe & DeAnna Jordan
By Joe & DeAnna Jordan
Hi there Braden, hi Delice, I'm so happy for y'all and will wear my shirt and keep praying. Love to you each, Joe
Michele Chase
By Michele C
Awesome news!! Bradon you are a miracle! Zach you are a hero! Prayers the deportation goes smoothly.
Nancy Pennell
By Nancy Pennell
HALLELUJAH!! Delighted to be celebrating the good news and praying all goes smoothly!!! Yes, Braden and Zach are indeed heroes! So is Brian and so are you, Deliece!!!!
Deb Bosch
By Deb Bosch
Sharing your joy! May the days only get better! God is good!
Sarah Nixdorf
By Sarah Nixdorf
Yaay, thinking of you.
Www.caring bridge.org/visit/sarahnixdorf
Laura Chambers
By Laura Cynthia Chambers
Congratulations!
Diane Turner
By Diane Turner
HAPPY DAYS! So glad to hear the news that we have all been praying for and will continue to do so.
Kim Watson
By Kim Watson
HIP HIP HOORAY! Being deported is truly awesome and a miracle in itself. Prayers for a smooth surgery and recovery.