Today is one of those really hard days. Today Mackenzie has another check up with her Rheumatologist and things aren’t going well for her. To top it off, thanks to this stupid pandemic only one parent is allowed to accompany her. Last time we had to do the one parent visit it was for our final visit with our team at U of M and mom got to be the one to go. Our first visit with our new Dr and team at Levine’s both parents were able to go because it was a first visit. Now today we are back to the restricted visit and it’s dads turn.
Our last visit was just six weeks ago (not our normal three months) and at that time we were just two weeks into her higher dosage of Orencia and he was hoping that by today she would be showing some improvement. Unfortunately that is not the case. Over the past six weeks she has continued to deteriorate with extended periods of stiffness and pain upon waking in the morning to full out swelling and debilitating pain throughout the day. She has been back relying on her crutches and wheelchair and is slowly beginning to withdraw from activity.
In so many ways this feels just like it did eight years ago when she was first diagnosed. Watching her battle this disease and the pain is heartbreaking. Listening to her fears of what might be next steps in treatment is heartbreaking. The inability to fix or take away her pain, the fear of the unknown, witnessing the battle she (and all JA Warriors) face makes us angry! No child should have to live in pain (for any reason)!
Today we pray for a new plan that will begin to provide her some relief from the pain and for strength for all of us as we get through this visit both in person (Mackenzie and dad) and virtually (mom).
“They whispered to her ~ you can’t with stand the storm 💙 She whispered back ~ I am the storm”