Stephanie Valdez: “I just wanted to give everyone an update on Harlie’s MRI.  Our rheumatologist came in and talked to us yesterday. He wants us to consider a new drug called Tacrolimus. The MRI showed some improvement but not enough. We need the disease to go into remission. The disease is still very active and we need to do something soon so we do not lose the progress we made and it get worse. It’s either try Tacrolimus, which comes with it’s own side effects, or more Cytoxan, which was a drug that was very hard on her.  The Cytoxan comes with the chance of infertility and cancer.

We need to make this decision by Thursday, June 11th. Has anyone had any experience with either one of these drugs?

The MRI results just makes me remember the fact of how sick her body really is…and how life-threatening this disease is…

Even though she looks stronger on the outside, she is definitely not out of woods yet. I pray we make the right decision for her to stay on a road to recovery and not have any steps back…I pray.

They finally took her off TPN (total parenteral nutrition) and have added a mixture of avocado, spinach, kale, wild berries, and broccoli into her feeds at night as well as her usual feeds by the g-tube.

With the upcoming decision that is having to be made on Thursday, any personal experience with either one of those two drugs (Tacrolimius and Cytoxan) would be so greatly appreciated.

Thank you again for all of your support, love and prayers.”