“A year ago today we sat in “the 8 room” of floor 11 at Levine Children’s Hospital and heard the final diagnosis of Stage 4 High Risk Neuroblastoma. The team had prepared us so well to hear it and even so that lengthy discussion filled the room with an immense weight and tension. I remember exactly where Dr O sat and that he spoke with just the right combination of frankness and compassion, but the rest of it is a blur in my memory. I heard words and categories that took me months to understand, but what I did understand was that all of what he said meant this was the bad kind, the aggressive kind, the kind that had already moved to other areas of my child’s body. By that point Ethen was already becoming unrecognizable in look and behavior due to fluids, pain medication and effects of multiple lengthy anesthesias over the week prior. Three days later he would be in the PICU. We knew our child was sick. So when Dr O said we should start chemo that afternoon, we were fully on board.
Today Ethen is here and playing, and as you will see in the post below, he is doing much more. The song my husband posted on the blog is perfect. We are so grateful for today and are seeking to trust in the days ahead no matter what comes.” -Ethen’s Mom
Positive news on this peanut to kick off Friday. Ethen went back home earlier this week and is doing very well after taking a big turn in the right direction. Ethen’s mom mentioned to me that the support they have felt is remarkable. Keep praying and lifting their family up. We appreciate our supporters and what they can do for our community and beyond!
Although Ethen will not be doing any more antibody treatment, he will continue on Accutane treatment followed by scans to check for relapse prior to scheduling surgery to remove his Hickman line and G-tube. Then Their hope is to be able to enroll him in a DFMO test trial. If you remember, DFMO was part of a trial in which you helped us fund starting out of Michigan. Results and ease of of the drug on patients have been incredible.