1/2/19 Day +246 Off Prednisone, Tapering Infliximab & Eculizumab

Tomorrow it has been two weeks since Reese was discharged from the hospital. This time has been a gift, we have been so fortunate that Reese is feeling so well.

At our clinic visit today, Dr. Chris walked in sporting his new PINK stethoscope that Reese gave him, sending her into a fit of giggles and joy. It’s amazing, seeing him outside the hospital and in the clinic. As you know, Dr Chris Dvorak is a big part of why we are here in San Francisco. We have the greatest respect for him as a doctor and also, he’s just awesome. During our appointment we set a calendar for the next few weeks. 1st on the list, hasta la vista prednisone- she took her last dose TODAY!! Tomorrow Reese kicks steroids to the curb and moves to hydrocortisone… just until her own adrenal glands wake up and start making it again. This is what happens after you are on high dose steroids for a long time. I can’t believe this day is HERE, I dreamt of this day so many times. The day my daughter would be so well that she would be off steroids… the steroids that made her diabetic and gave her high blood pressure for months. The steroids that have put her in danger of infections, suppressed her immune system, and made her tiny body blow up like a balloon. DONE.

So, what’s next? This is where the art of the taper comes in. And it truly is an art, Reese is on a lot of immunosuppression. Tomorrow the taper begins for Reese with Infliximab. Reese started Infliximab in early June, a second line agent to combat her gvhd. Tomorrow’s weekly dose will be held and then given every other week the remainder of the month. If this taper goes well, it will be off completely in early February. Simultaneously, we are going to begin a taper of eculizumab. This is the TMA medicine that Reese has been on since October. On the opposite weeks, this weekly infusion will be moved to every other week and then off completely. So, if everything goes well, by early February, Reese will be off prednisone, infliximab, and eculizumab.

As if this isn’t enough, my doctor and I also set a date. For THE TALK.
What talk you ask?
To discuss when are we going to move this party east… 2,139 miles east to be exact.
The date to talk about this is set for February 6. If all goes as planned, we will be making big decisions about Reese’s care and the location of that care a month from now! If I had to make a prediction, my best guess, I’d put a little heart on the week of March 1.
As Reese always says, God is in charge. And He is the one who helps the doctors make the medicines. I ask God to protect Reese and keep her safe during this crucial taper. Please keep her body strong and help guide us home, together.

Leave a Reply

Your email address will not be published. Required fields are marked *