Journal entry by Erin Cimpl Nahorny

Stupid, stinkin cancer. The MIBG scans and CT reveal no change since the last scans before MIBG therapy. While we are thankful for no progression at this time, it is also frustrating and discouraging. 

From October 2013 to January 2014, there was slight progression, while he was receiving chemo. From January to April 2014, there was no change with no therapy during that time. And now, there is no change with high-dose whole-body radiation. It's a very helpless feeling. It doesn't seem to matter what we do, the cancer does what it wants to. 

While the therapy destroys his platelets and red blood cells, requiring weekly transfusions, it doesn't seem to destroy the cancer. Believe me, we are thankful for stable, but it's still hard. We are so desperate to hear NED, yet that feels so far away. How can our seemingly normal healthy 6 year old boy be so sick?? We will hear about the bone marrow biopsies next week. There are a few phase 1 clinical trials we could discuss, but we will definitely need some guidance about the next steps of treatment. 

Today, Sam once again needed both blood and platelet transfusions. We have decided to do a stem cell transplant/infusion next Wednesday, to try to rescue his marrow. Thank you for all your love, support and prayers. Please keep them coming as we make the next difficult decisions.
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