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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

Fevers...

Well today did not begin as planned.

Come to think of it, pretty much the last 13 years have not gone as planned.  :)

So early this morning, Braden climbed into bed with us crying and saying that his head hurt. I got him back to sleep but it was clear that he had the cold I've been fighting for about a week.

Something I didn't want to share.

Keeping Braden away from germs and icky sickness has been the biggest I have had in the last 6 months. Somehow I got it and even though I tried to stay away and wash my hands, he has it now too.

He spiked a fever of 101.3 at about 8:00 this morning. The magic number is 101.5. If he spikes a temperature at that number, of above, we automatically earn a trip to the hospital. Every single time for the past nearly 7 years because he's always had a central line.  He wasn't at 101.5 but he was so close that I called.

The fear is that he has a central line infection so they have to run cultures on both lines to make sure that this isn't the case. A central line infection can cause a child to go septic and die. It's a pretty big deal and requires inpatient IV antibiotics for about several days to treat. 

So every fever, we head in, they draw cultures, and then we see if his ANC is low or high enough. High enough means that he can get a single dose of IV antibiotics and we can go home. Too low means we are in the hospital for a several days.

Braden's ANC has been good since his transplant. Z-Force (his brother Zach's bone marrow cells) have engrafted and they are rocking things out in there! But this virus is the first real test of Braden's new immune system.

And he had a rash on his cheek. A rash that looked like GVHD (or graft vs host disease). That happens when Braden's body fights Zach's cells. And that had me concerned. My worry is that this rash is a sign that the virus has caused Braden's body to realize Zach's new cells don't belong there and it's fighting it again. There are no other spots anywhere, just his cheek so we are treating it topically for now with a special cream.  That's how we treated his other GVHD as well.

I was scared to hear what his ANC was but it was awesome...3680. So we knew we were going to be able to come home today which was really good!

So we prepared for his dose of IV Antibiotics and when they finally rolled the pump into the room, Braden's eyes got HUGE and he started to get up saying, "NO...NO MEDICINE!!" 

Braden has never really understood what chemo is...he was 3 when it began and he has autism. But he most certainly remembered that pump from March and what happened after he had the medicine in it. Transplant is NOT fun....and Braden clearly understood that message VERY clearly.

Immediately, I told him that this was not the medicine that was going to make his tummy hurt and his hair fall out. He calmed down but checked frequently to make sure which medicine we were going to give him and what it was for... 

I can't blame him. I would have wanted to make sure too. 

And it broke my heart...poor baby. He should not have to know what he knows. cANCER, you stink!

We have been at home all day, only one more fever but since he has had his dose of IV antibiotics, I can give him Tylenol. You can't give Tylenol before they draw cultures here in KC. 

So now we wait to see how he does with this first virus since transplant. We watch to see how Z-Force fights, how his body reacts to that fight, and how he recovers. 

We could use some thoughts and prayers that he remains as healthy as possible and recovers quickly from the virus, that Z-Force takes out all the bad virus cells, and that we do not have a GVHD problem. That last one is a pretty big deal...well, they all are pretty big deals.

Thanks Army!! One day at a time...

our new normal. :)


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Comments

11 Comments

Lori O'Dell
By Lori O'Dell
Praying for a sweet boy to kick butt and heal from this virus. Lord we know you are taking good care of Braeden.
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1 person hearted this
Tom Baldwin
By Tom Baldwin
Go Z-Force! Take over and keep fighting! Prayers coming your way that all turns out good. Love to all of you!
Kate Schwartz
By Kate Schwartz
Z-Force has got this! Prayers for healing and no GVHD for your sweet guy.
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1 person hearted this
Julie Still
By Julie Still
Praying and trusting that the battle will be fought and won by the Z-force, with a helping hand from our Heavenly Father, the Healer! :)
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1 person hearted this
Sarah Nixdorf
By Sarah Nixdorf
Thinking of you.
For me well visits aren.t fun. To me IV.s are a treat. In fact if I feel that my body needs one right away I go and get it.
You.re Army Strong.
Www.caring bridge.org/visit/sarahnixdorf
Tiffany Lang
By Tiffany — last edited
Come on Braden's body, those are your loving brother's cells fighting for you. Let them represent his love and fight off the virus, you just stay focused on staying positive and feeling better. Bug hugs to all!
Suzanne McClendon
By Your sis in Christ, Suzanne McClendon, for the McClendon Family
We're praying for Braden to win this battle as he has all of the others and praying for strength for all of you. Most of all, we're praying for total healing and restoration for Braden, for a long, happy, healthy life ahead for him.
Melody K Bowen
By Melody K Bowen
Hang in they little buddy....I've been following you and you are the strongest person I know!
Mary Kramer
By Mary Kramer
All of our prayers will keep coming.