I was just sitting down to call Stephanie today to find out how Harlie was doing.  Thank you for all of your comments on RUN as well as Facebook. Stephanie, Gabe and Harlie read them all! They appreciate your support and prayers more than you will ever know.

Harlie was able to go home for a few days. It was good for the entire family to be together again at home. I called Stephanie last week to check in on Harlie. She mentioned that Harlie had a bulge on her back. This was something new and something very scary. I knew she took her in to show her medical team at the end of last week. They took x-rays and sent Harlie back home.  They found out the next day that the bulge is called calcinosis, which is common in dermatomyositis. The will start her on a treatment of IVIG when they go in the next time on March 31st for another treatment of Cytoxan.

Well, Harlie is being admitted today.  She has extreme swelling in her legs and feet. The doctors are worried there is something going on with her heart. The bulge is extremely painful and she cannot stand with the pain. They will check her protein levels as well as her kidney function and liver function.

Update: They will probably do a MRI tomorrow and consult with her GI team. All of the teams will discuss Harlie’s next steps tomorrow.  Her blood pressure is low and her heart rate is high.  They have her on morphine for her pain.

Stephanie and Gabe appreciate all of your support and your prayers.