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!
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!
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.
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!!
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!
19 hours agoHi Army,
I'm sorry for the lack of updates, but that is actually a good thing. :) We had a wonderful Thanksgiving holiday and spent a lot of time together with family and friends. We are enjoying every day but especially holidays.
I have pulled out the Christmas stockings from their box. Each year, I kiss Braden's and put it on the top and say a prayer that the following year he is here with us when I open that box up. This year, I was extremely grateful. I did not think Braden would live to Christmas. On July 8, when Dr. Neville gave us the news of his MDS and told us how horrible his odds were, and the "several weeks to a few months I timeline" I remember thinking that it was going to be horrible to pull those stockings out this year. And it was nearly more than I could stomach. Dr. Mosse and Dr. Neville both said they have never known a child to survive treatment induced MDS with a neuroblastoma diagnosis.
Despite all of those odds, he's here.
That is most assuredly a Christmas Miracle. Thank you Lord! It's truly humbling and we are extremely grateful.
He is HERE!
TAKE THAT cANCER!
Braden had labs today and we got some news that I still can't believe. Braden's platelets are at 151,000. The bottom of the "normal scale" is 150,000.
His platelets are NORMAL!
Sounds like a nice thing, right? Well consider this...I cannot recall Braden ever having platelets this high. I've done some looking through all the labs I have saved and I can't find anything higher in nearly six years.
Sounds more impressive? Well, wait...
He is getting chemo. In fact, we start round 5 tonight right after I post this.And chemo knocks down platelets (along with other healthy cells, and hopefully cancer cells). So he has active chemo killing those platelets, yet his are at 151,000.
The reason he is having chemo shots...we don't want to go to bone marrow transplant (the only known cure for MDS) because it may kill him and if it doesn't it will cause life-long damage which could greatly lessen the quality of his life.
Oh and when we put in the donor cells (and yes we have found a donor...there is ONE in the entire world...one and only one in the entire registry), if there are any dormant neuroblastoma cells, they will rise up because they have not been taught to keep neuroblastoma cells dormant. His current immune system has undergone multiple therapies designed to try to teach it to identify them and keep them quiet.
And neuroblastoma again after transplant would kill him. So the chemo is designed to buy us time...time to make memories before transplant.
Dr. Mosse told us that the first sign the MDS is progressing will be platelets lowering. The fact that his platelets are rising is a VERY good sign that the chemo (AZA) is working.
And as you read in a previous post, his bone marrow aspirate last round showed zero MDS cells in that sample.
While that is encouraging, we cannot say that Braden is in a remission from his MDS....and yes, that is possible but VERY few children have had this happen. Very few children have treatment induced MDS (about 2-3% of childhood cancer patients) and a very small percentage of those children survive...and an even smaller percentage go into a remission from the AZA.
I didn't even know that could happen, but I know of one now.
We will continue AZA until....
Until the MDS gets active and we have to go to transplant...ugh.
Or until we can prove that he is in a remission from his MDS. We cannot assume that sample was 100% accurate because it was only one needle draw from his bone marrow.
It's kind of like putting your fishing net in a pond filled with fish, doesn't mean you are going to get a fish every time even though the pond holds fish. We will monitor his bone marrow aspirates and biopsies over time and if they continue to be zero, we will be able to use the word remission.
I'm praying for that day.
I've had multiple people ask me if the doctors just made a mistake originally with his MDS diagnosis. Not possible. The level of lab work that has to be done is not something that can be an "error". They had to go through extensive DNA testing and that DNA testing showed a deleting of the q7 chromosome which is what is the MDS...his DNA is altered and about 18% of his cells had that mutation.
It is the latest sample that showed 0% of his cells as having that deletion, but I caution you to remember my fishing pond analogy. I'm still not sold on remission, but those platelets rising is making me very hopeful that it could happen!
SO...now you probably see why that 151,000 number is so remarkable.
So amazing that I am starting to actually hope and believe that it really could actually be conceivable that he is in a remission.
I've been actively trying to eliminate that hope with my pessimism. I have been working VERY hard at it! :)
And I have been waiting for the other shoe to drop.
I've told you I'm a hopeful pessimist. And I'm REALLY good at the pessimist part. ;)
The hopeful part is gaining momentum...especially given a number like 151,000.
Absolutely AMAZING. Keep those thoughts, prayers, and hope coming Army. I can promise you one thing, it is working! Please keep it going, we have to push harder now than ever but what a gift to be able to HOPE!
We should not be hanging his stocking on the mantle believing that he will be here on December 25.
We are blessed beyond all imagination!
Have a wonderful evening! We sure are here!
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