This was not the update I was hoping to give regarding Brooke's scans yesterday. Her cancer has unfortunately progressed and she now has a second tumor that is located at C7 in her neck (her original tumor is at L4). Apparently it has been there since her scans in February just prior to starting this clinical trial. At that time I saw what appeared to be her thyroid area light up very brightly during her MIBG scan - I was concerned obviously but reassured that it was not NB and was lighting up because she had missed a dose of her SSKI drops that protect her thyroid during the scans (she missed the dose because the scans were done last minute and the drops are supposed to start the day before the nuclear medicine injection). Then during her next set of scans in April, that area lit up again (but appeared lighter to me) and I was even more concerned because this time she did not miss a dose. Extra imaging was done in that area but the radiologist again said it was not NB. So today when it lit up again and yet more imaging was done in that area my gut told me this was progression and a call from Dr. Maris soon after confirmed my worst fear. He said that it does look lighter than it looked initially and her tumor on L4 also looks a little smaller. Because technically the progression occurred just prior to starting this trial and not during it that she can stay on the trial and that is likely what we will decide to do since both tumors seem to be responding to this treatment. I will be meeting with Dr. Maris today at 3:00 to discuss this further. They had her do a CT scan late yesterday afternoon of the area for additional images and then finished the day back in the oncology day hospital for a platelet transfusion. Right now she is in the OR having a bone marrow biopsy. Please pray for my baby - progression is a very scary thing with NB. I'm trying my best to be strong and holding on to the fact that it at least seems to be responding.
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