Close

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Braden with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

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

Five years...

His relapsed neuroblastoma had continued to defy a cure although scans every 3 months had shown that at times it was shrinking a little or at least staying stable.

The chemo he was currently on was wreaking havoc on his system and once again our oncologist in Kansas City was telling me that we needed to abandon this therapy he had been on for 8 months. The oncologist said that it was time to stop because the therapy was just too hard on his body. We were trying to qualify for another therapy but his platelets remained too low and he couldn't so we convinced our KC oncologist to reduce his chemo by 50% and we doubled the time interval between his doses in the hope of continuing the therapy and keeping his cancer at least stable.

We had several times before this that our KC oncologist had told us that we were at the end and we needed to accept our reality. And every time I had argued, advocated and powered through it, but this time I was beginning to wonder if he was right. However, I was able to buy enough time with him to get him to concede to one more round before Braden's scans on January 26.

We knew that the this scan was critical, to be honest, every scan is critical. If scans show that the cancer is stable, that's a win. If scans show that the cancer is getting smaller it's a victory but if it's growing, it's a different game entirely. And it's never a good thing.

Braden was six. 

We went in for scans and then headed to clinic to see Dr. Mosse. She is our oncologist in Philadelphia. 

We were experiencing "CHOP time" and had about an hour delay in trying to get in to get the results from scans. To top it off, the first person we saw in the waiting room was Dr. Mosse who came out to tell us hello. That never happens! She is always in the back and we don't see her until result time. She commented that he looked great which helped me a little bit. Surely, she would not have said that if things were worse.

We were eventually called back to the examination room and Dr. Mosse was with the fellow who was working with her. She smiled and said, "I'm just thrilled to be able to tell you that Braden's MIBG scan is completely normal". 

I just sat there and all I could eek out was, "I'm going to need for you to say that again." She did and then the tears started.

For his cancer that had not been cured in 18 months of the therapies post relapse to suddenly be cured with half the dose and double the time interval between his latest chemo cocktail (that he had been on for 8 months) to suddenly get it was remarkable.

Our conversation didn't end with advice to go home and enjoy our victory, instead I pressed for us to try to get antibody therapy for Braden now. I wanted to make sure we cleaned up any left over cells. I firmly believe that we need to treat neuroblastoma like a chronic disease because the cure rate is so low. We think we have it beat, but we don't so follow up therapies are critical when you have it "down". 

We were trying to get it for Braden enrolled in antibody therapy when we found the relapse which meant he couldn't receive it. However, because he was in cue, we were able to get a unique exception for him to receive it. At that time, it was not standard care for all children with neuroblastoma as it is currently. It is a therapy that can go in and clean up leftover cells that scans cannot see and I wanted it, badly.  Dr. Mosse made calls to the NIH and gained us the exception and we would start it a few weeks later. 

When Braden's neuroblastoma relapsed there was no known cure. Five years later, there is still no known cure and less than a 10% chance for five year survival.

Somehow, we have been blessed with those five years and today we can say Braden is a neuroblastoma survivor.  He still has 3 years left to go before he is a secondary leukemia survivor but we are going to celebrate today. 

We left the hospital and headed to the airport in Philly, but it had been snowing and the forecast called for a major storm. Because of that, I had kept our hotel room in the event we didn't get out that night. 90% of the time, we don't get home the same day we think we will when we travel to and from Philly...it's always something and the forecast was enough for me to think we were probably not going to make it out that night. 

The airport ended up closing about 30 minutes before our flight was scheduled to depart because of thundersnow. The unhappy travelers were most certainly just that, unhappy. But we kept smiling. Someone commented about how we sure seemed happy with the bad news and I, rather loudly, explained why and that no travel plan changes could change our happy faces that night. I heard far less grumbling after that, at least no grumbling close to us. 

We were lucky enough to be on the last shuttle that left the airport to the hotel where we watched the most beautiful snowstorm. Snow is one of Braden's most favorite things in the world and I'm still pretty sure that it was no coincidence that we got nearly two feet that same day. 

We have been blessed and lucky. No other child has traveled the therapy journey that Braden has traveled, he is completely unique.  I still don't know how or why and there is a great deal of guilt that comes from being able to kiss my son every day when so many mommies cannot.

Thank you all for keeping us in your thoughts and prayers along this journey. We still have bridges to cross and miles to travel and we will keep doing that, one step at a time.

With HOPE!

TAKE THAT cANCER!
heart
84 people hearted this

Comments

27 Comments

Kim Watson
By Kim Watson
Braden is a true miracle of what God can do. My heart is overflowing with joy for you. You have earned and deserve every hug you get, don't feel guilty.
Kim Watson
By Kim Watson
A true miracle if there ever was one. My heart is overflowing with joy for you. You have earned and deserve every hug you get, please don't feel guilty.
Marsha Zimbelman
By Marsha Zimbelman
Braden you are my hero!! and Zach too💕
Mary Martha Schmidt
By Mary Martha
God, prayers, HOPE, love, and BELIEVING are the how and why, my dear friend.......please don't ever feel guilty....it is God's WIll, not ours. Love you! 😘🙏❤️
Tom Baldwin
By Tom baldwin
Truly a living miracle! Way to go Braden! Love,hugs,and prayers!
Kristin Anderson
By Kristin Anderson (Schoolman)
That's phenomenal! What a feat, what a journey. I am elated! XOXOXO =)
Tammy Kepley
By Tammy Kepley
Praise God from whom all Blessings flow.
Melissa Kennedy
By Melissa Kennedy
Awesome news!
Franky Long
By Franky Long
Ditch the guilt, embrace the gratitude!

Prayer warrior in MN.
Michele Chase
By Michele C
wonderful news! praying for good health always...