Journal entry by Erin Cimpl Nahorny


Sammy is doing awesome. He started 1st grade and has only missed about 4 days of school so far this year. He has lost both front teeth and is a bit of a toothless wonder right now!

He was able to play soccer this fall and was so proud to get his medal at his final game last weekend. He is feeling good and looks great. He is enjoying play dates with friends and is a good student. We are very proud of him.

We haven't had scans since June, which showed no change from the previous scans. His VMA/VHA urine markers are stable, so we will wait to do additional scans, biopsies, etc, until there is an opening in the clinical trial Dr. Cohn has suggested. We were recently told it will be at least 2 months, but Dr. Cohn and Dr. Coulter agree that this is the best treatment option for Sam. Of course, we trust them implicitly, so it's a no-brainer. Plus, we are really enjoying "normal" life.

We continue to feel extremely blessed that Sammy doesn't complain of pain and is generally a happy 6 year old. Thank you all for your continued support and prayers. This is a pic of Sammy wearing a new fighter's shirt, Troop Maxon. ❤️💛💙
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