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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

A Week Later...

So our story continues 7 days after we last updated.

Last week, we were told that Braden's scans came back clear for neuroblastoma which is simply a HUGE deal. 

Unfortunately, his white blood cells were extremely high, 16.6. Braden's "normal" is about 4.0-4.5.  A high white blood cell count can indicate leukemia.

I admit that I did flip out, on the inside. The other thing that could cause it was a virus and the good news is that his hemoglobin and platelets were normal for him. Leukemia usually depletes those cells and builds massive white blood cell forces.

So I was calmer...after it was pointed out to me that the 4.12 I was reading was his red blood cell count and his hemoglobin was a line lower at 11.9. 

I honestly do need glasses.

After I saw Braden's counts last week, I actually went back up to clinic and talked to our nurse for the day, Maggie and told her what I was concerned about. We were in clinic and Braden was feeling very puny as Dr. Leahy examined him. She knew this was not his typical energy.  That can also be indicative of a blood infection and sepsis.

We were on the verge of earning an overnight stay at CHOP when Braden was kind enough to violently throw up all over the room.

And then happily say, "I feel better...I'm all good now!" 

And he was.

That led us to believe that we were dealing with a virus...well that and the fact that we ran an abdominal x-ray to rule out any huge gray shadows (neuroblastoma...this was before his scan) or a possible inflamed appendix. The super cool thing was that one of our friends was running the x-ray department that day so we got to see her twice! Once social, and once for an x-ray. ;)

We escaped CHOP at about 8 pm and slept at the hotel to return at 6 am for Braden's scan.

Braden and I met with Dr. Olson, our MDS/transplant doctor after we learned his scans were clear. Dr. Olson was very cautious to say that he thought it was just the virus. Silly doctors and their wanting to look at all data before allowing you to breathe... ;)

Dr. Olson wanted to see how Braden's chimerism study looked (blood test to see what percentage of Braden's bone marrow was Zach's Z-Force cells and what percentage was his own) and  he wanted us to repeat a CBC today to check to make sure that the white blood cells had gone back down to a normal level before he was willing to give us a thumbs up for "this isn't leukemia".

It's been a long week.

I spoke with Philly on Tuesday (I think) and they said that Braden remains 100% Z-Force cells in his bone marrow. That was huge!

Today, we went into clinic here in KC and had a CBC drawn and then we waited for results. I will be honest and tell you that was a really hard wait. 50/50 shot that they were going to come back in and tell me his wbc's were high which would mean we were not out of the clear for leukemia. And if it was leukemia, we were in big trouble.

His wbc's were 4.3!! A Beautiful, Normal, Happy 4.3!

His ANC last week was 14,000---this week is 2,300 which is also beautifully normal for Braden.

I am breathing again.

Thank you all for your continued thoughts and prayers. They mean so much and we are grateful. We will go back for another CBC in a month and then back to Philly at the end of March for scans and Braden's one year post transplant labs and tests. They will do extensive testing of all of his organs to see how much we have damaged them in addition to the regular things we do.

Dr. Olson told me that kids have the highest rate of relapse between 8 months and 12 months post transplant. Braden is at 8 months. 

Please keep those thoughts and prayers coming. I completely believe they are the reason we have gotten this far.

Happy Holidays and we will update on December 28, Braden's 7th cancerversary!

Many blessings and thanks to each of you!
Deliece 
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Comments

15 Comments

Valerie Stitt
By Valerie Stitt
Here's to a very MERRY Christmas and a Happy New Year!!!!! As always Braden and the whole Hofen family are in my prayers daily. Love and God Bless
Mary Forschbach
By Mary F
What a wonderful Christmas present to receive. May the new year bring additional good news. Happy Holidays to each of you.
Karen Strawder
By Karen Strawder
We will continue to pray! I praise God Braden is doing so well!!! Have a very Merry Christmas!
maureen liggett
By Maureen Liggett
YES!!!!!! Thanking God for His love, care and support of Big B and you Momma Bear, your family and Braden's Army. Prayers really does make a difference.

My mind always goes back to that dream I had of Braden as a your adult, dressed in jeans and a football jersey. Standing and posing for the camera, the sun in his eyes making him squint. Smiling and happy. You had a big smile on your face too, Deliece...I believe and I have HOPE and great love for the Hofens.

Wishing you, Braden, Zach and Brian a wonderful Christmas and a healthy, happy and prosperous New Year. xoMo
Tom Baldwin
By Tom Baldwin
Amen on everything good! Will keep praying for continued good scans and numbers. Merry Christmas and Happy New year to all of you! Also love, hugs, and prayers!
Cyndi Van Volkingburgh
By Cyndi Van Volkingburgh
Merry Christmas, so glad you get to breathe through the holidays! Hope they're very merry for you all!
Michele Chase
By Michele C
Wow! What a relief. Praying all remains good... Happy Holidays!!!
Randy Harpell
By Randie
Hugs!
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Steve Georgon
By Steve Georgon — last edited
You guys are awesome...just keep breathing, Deliece! ;-)
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Sarah Nixdorf
By Sarah Nixdorf
Yaay. Happy Hannukah.
Www.caringbridge.org/ visit/ sarahnixdorf
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