Journal entry by Erin Cimpl Nahorny

We got all the results back from Sammy’s testing in Chicago last week and it’s not exactly the news we were hoping for, but as usual, we will just go forward with the guidance of the doctors we trust.

When we initially spoke with Dr. Cohn after Sammy’s scans on Wednesday, she said things looked largely stable. When you look at the MIBG scan, it doesn’t appear to have any major differences, but she said we would wait for the final reports from radiology. 

On Thursday, we met with Dr. Cohn. She said that the CT showed the lymph node under his clavicle grew from 2.1 cm x 1.0 cm to 3.4 cm x 1.6 cm. The radiology report also shows a few additional areas of bone involvement in the pelvis and femurs on the MIBG scan. It’s not a drastic change, but chemo is obviously not working. Up until this point, Sammy’s disease was considered refractory (limited response or no response) but “stable,” now it is considered “progression.” Progression of disease changes the options for clinical trials. There are several trials open for refractory or relapsed disease, but when there is growth, that changes some things. In addition, bone marrow results are still positive for Neuroblastoma, 1% on one side and 30% on the other. 

Dr. Cohn’s initial suggestion is to try some localized radiation to his clavicle area and to the residual tumor/lymph nodes in his tummy around the area where his primary tumor had been. We have not tried this yet, and localized radiation could potentially shrink these areas. We also put him on the waiting list for a NANT clinical trial that combines a drug called Lenalidomide with anti-body therapy. 

For right now, we are going to process this information and just take a little time. We have an appointment scheduled with Dr. Coulter tomorrow. We know he will give us additional perspective and guidance. 

We cherish your support, kindness and prayers. Thank you for standing by us through this journey. We  <3 Sammy’s Superheroes.
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