Wednesday, May 28, 2014

Brody is Starting the HSV trial

Brody completed all of his baseline scans and tests yesterday and today.       Brody is a go to start the HSV trial.   He will actually be getting his first HSV injection tomorrow (Thursday).   He will stay at Nationwide Children's Thursday night and should be able to go home sometime Friday.  

I am both excited and nervous to be starting this trial.   We do not know if it will work for Brody but we are praying it does.   It's scary to be off chemo that was at least slowing things down but obviously it hasn't been slowing the tumor down enough.   I am hoping HSV miraculously heals my child.   There have been other patients with "incurable" cancers achieve complete remission with oncolytic virus therapy.  Maybe Brody will be the first person with rhabdomyosarcoma healed with oncolytic therapy.  He will be the second child with rhabdomyosarcoma to receive HSV.   Unfortunately,  it was not a success for the first child.   But,  you just never know,  it may be a completely different story for Brody. 

We have no big updates on the suspicion that Brody's cancer may now be in the bone marrow.  The oncologist felt it was not necessary to go looking for it if it does not change the treatment plan.   He felt that the PET CT could give a false positive for cancer in the bone marrow and that it's somewhat invasive to do a bone marrow biopsy.   So we are not going to go looking.  

Brody continues to feel very good.   This fact alone keeps me happy.   I am so thankful for every feel-good day we get.  

Brody's kidney function has continued to improve a little bit each day. 

He got blood on Friday and his hemoglobin so far has been good since then.   His hemoglobin should not drop while he is participating in the HSV trial.  If it drops we will worry again about the cancer being in the bone marrow.   If it stays steady or improves then it's likely not in the bone marrow.  

Dr. Strunk did let us know Tuesday morning that Brody's erythropoietin level was actually high rather than low so it's not a kidney function problem causing the low hemoglobin levels.  

We are lucky to have gotten a room at the Ronald McDonald House across the street from the hospital for this week in Columbus. It helps a lot to not have to pay for a hotel room this week.   Jaden and Brody have both enjoyed checking out all the fun stuff to do here too. 

Well,  I better get some sleep.  

Keep crossing fingers and saying prayers!

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