To Remission & Beyond

By April on August 26, 2013 in Uncategorized with 1 Comment

To Remission & Beyond

As you know the last 2 scans have been exactly the same and there were no changes to the spots on his legs.  It was thought after the last scan that maybe the Neuroblastoma had changed to ganlioneuroma.  Unfortunately, since it’s on the bone, there was no way to tell for sure and it could just be monitored.  Last Friday Brady underwent a repeat MIBG scan.
MIBGThis is the scanner- very similar to the machine used for a bone scan.  If you look close, you can see the top of Brady’s head in this view.  The scan lasts an hour and a half.  He is sedated for the scan so we are there much longer to prepare for the scan then to recovery afterwards.  Brady does not wake up very happy following sedation.  He usually wakes up immediately following the scan and then falls back to sleep when we are in recovery.  It’s best to let him sleep it off.  Well after close to an hour and a half on Friday, it was time to wake up.  He was not happy about it and he gets very angry and aggressive.  He pulls my hair and after the scan in May he started scratching and biting.  We try our best to stop him & restrain him, but sometimes restraining makes him angrier.  This time Brady was on my lap with his hand in my hair twisting & pulling it and I was trying to calm him down and I was fighting back the tears. I just hate what all of this has done to Brady.  He was NEVER aggressive or physical.  He’s frustrated, mad and just tired of all of this and just doesn’t know how to express himself.  Plus being on Accutane for 2 weeks every few weeks is not helping the mood swings.  So, as he was pulling my hair his Dr came in and I tried to get him to say “hi” and hoping that her coming by would distract him or snap him out of it.  It did a little.  Then she told me she had seen the scans and they were clear.  Honestly, I don’t remember her exact words after she said she saw them- all I know is I heard the spots were gone and I just let the tears I had been fighting back go, but now they were happy tears.

We are beyond thrilled to finally say NED “No Evidence of Disease”!! To Remission and Beyond!

This doesn’t change his treatment.  We continue with the rest of antibody.  Neuroblastoma is highly aggressive and “ch14.18 is a monoclonal antibody designed to bind to neuroblastoma cells and stimulate the patient’s own immune system to target and kill the cancer.” (Info taken from Children’s Neuroblastoma Cancer Foundation).

We need to decide once antibody therapy is complete if we will have him take place in the DFMO clinical trial.  The study is investigate the use of DFMO to prevent relapse of neuroblastoma in remission.



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1 Comment

  1. Bob Carlsen

    August 27, 2013 at 3:08 pm · Reply

    To say this brought tears to my eyes isnt enough it brought a River,Brady will be in my thoughts @ Prayers every Day such a Brave Boy and wonderful Family.

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