Today was beyond words difficult
Day 58
Transplant Day -5
This photo is not at all indicative of how today went, but I really needed to see a smiling Tate. ❤️🩹
We need prayers. Tate is really really struggling in all ways. Pain and nausea are relentless and unresponsive to meds. The most concerning and heart wrenching symptoms are the neuropsych reactions she’s having to the meds. What these drugs are doing to her brain are making even the simplest of tasks nearly impossible. She looks like our girl. But her words and actions are uncharacteristic and unrecognizable. We barely kept her out of the ICU today as an Rapid Response call was debated by her team.
Tomorrow brings more fludarabine and the dreaded rabbit ATG. This is the one that can cause high fever, severe pain and more nausea and vomiting. Methyl prednisone is added to decrease inflammation but is one that is hard on all kids neuropsych-wise and historically we avoid for Tate if at all possible because of her strong negative reaction. The only goal at this point is to finish prep and get the cells into her on transplant day. There’s no stopping as she’s already depleted her bone marrow enough that she wouldn’t survive without it.
Please pray for Tate. For God to protect her brain and to calm what must feel so terrifying. Pray for God to reassure us by allowing us to see “our” Tate. Pray for the medical team to find solutions to manage symptoms and pray for Tim and I to have the stamina and strength and faith to get through this. Today was beyond words difficult. We are bone tired. We are sad. And we are scared. ❤️🩹