I had the hematology/oncology appointment yesterday and this is what we know:
-My body has rejected my donor graft (my immune system is apparently just too stubborn to let the new cells do their job)
-My graft the first 120 days was stable, now it’s not
-I will go on a month of heavy immunosuppression to try and salvage any donor graft that remains but ultimately that is just a band-aid fix.
I need another stem cell transplant. (targeting early spring)
I wish there was a word stronger than devastated to describe this feeling. How do I explain to my babies that the thing that was supposed to help me, hurt me? I’ve walked aimlessly around my house today grieving, trying to figure out what the next right thing is.
I’ve been seeking refuge in God because I simply can’t understand this. I don’t usually call my relationship with God a coping skill because I feel it devalues it, but that’s what it is right now. I’m not even particularly angry anymore just completely and totally worn down. I’ve learned a new definition of faith: Faith is not allowing our circumstances to define the character of God.
I still believe God is good. Your prayers have not been in vain.
To be honest, I’m just not sure about miracles. Maybe miracles are literally the only thing I’m immune to these days. Maybe the miracle is I haven’t been checked in to a mental health facility…YET.
I’ll update more when I have more information. For now what is changing is 2x weekly blood transfusions and I have to be very mindful of my immunocompromised status. So it’s out of love that I may have to decline social invitations and be careful who our family can spend time with. My doctor said his biggest concern for me is risk of infection, so for now that is also mine.
Thank you for being a part of my healing journey,
Danielle
Reimagining Resilience 