Ice cream

Ice cream is good for so many things, whether for comfort food or for celebrating something special.  The day I had my cerclage and terbutaline pump removed and went off of bed rest (until that evening when I went into labor), we took Jackson for ice cream to celebrate.  When Luke was still in the NICU, Pete and I would sometimes stop for ice cream late at night to try and cheer ourselves up after visiting him.  Today we had ice cream to celebrate some good news...finally.

The CT scan showed no visible tumors!!!!!!!!  (Sorry, that definitely warrants multiple exclamation marks!)  It won't be 100% confirmed until the 24-hour urine collection results come back next week, but we are relieved beyond words.  Unfortunately, the opsoclonus myoclonus will still require aggressive treatment and monitoring for a long while, especially because the likelihood of relapse is quite high.  As of now, the treatment will consist of the ACTH injections and may include monthly IVIG infusions (immunoglobulin to treat the autoimmune disorder) if any signs of opsoclonus/eye movements return as we try to wean down the ACTH.  Yes, you could say we have learned way more medical jargon in the last 9 months than we would have ever wanted.

For now, we celebrate each victory, big or small, and this is a BIG ice cream-worthy one!

Thanks to everyone for your loving thoughts, prayers, and support for little Luke.