Phoebe had her CT scan, MRI and bone marrow aspirate today. When the oncologist came to deliver some of the results, she was accompanied by the neurologist. My heart sank. We haven't seen the neurologist lately because clinically, Phoebe has been improving since her stroke. We don't have the bone marrow results yet, and the CT scan shows improvement to the nodules in Phoebe's lungs, but the MRI shows a lot of swelling in and around the brain. This inflammatory response is secondary to the infection and they are not sure what to do. This is Phoebe's brain and they are not sure what to do. There are no right answers. They can give steroids to help with the inflammation, but because Phoebe has a fungal infection, they would rather not and so we are watching and waiting and regrouping on Monday to see how Phoebe is doing. They are encouraged because Phoebe has improved since the stroke and she appears to continue to do so. There is hope that this is a healing process that will resolve with time, but it is still terrifying. The neurologist was talking about Phoebe's brain and the changes that they see and then he said, "God willing if she survives this, she may have some cognitive impairment". I was at a loss for words. I often struggle with how to write in a way that truly tells of the fear we experience each day or the odds that we are up against, so I am sharing his words because they are clear.
This is our reality. This is the fear and desperation and soul crushing uncertainty that we live with each day.
We brought Phoebe into the hospital for a fever almost 40 days ago. Just a fever we thought, she will be home in a few days. Just treat the source of the fever we thought so that we can get back to treating the leukemia. Since then, Phoebe has suffered two strokes causing slurred speech and weakness on her left side, she has had a blood infection, a fungal infection in her lungs and her brain, and an infection in her belly. She has been in the ICU twice for two separate issues. She is now fed through a feeding tube. She has almost completely lost her voice due to swelling in her throat and vocal chords. She cannot sit up by herself. She is too weak to walk. Her liver is angry and irritated causing her skin and the whites of her eyes to turn yellow with jaundice. It is so hard to believe that all of this has happened in such a short time. Phoebe is a very sick little girl, but ... she is getting better.
There is talk of sending us home tomorrow. We hope to have finally seen the end of the almost 40 day fever stretch. Phoebe is tolerating her tube feeds and drinking hot chocolate and water by herself (the hot chocolate is thanks to the volunteers who come by each night to offer it and coffee). She is awake more often and she smiles at least once a day. She is determined. Her voice is so weak and at times she is very hard to understand, but she will repeat herself as many times as it takes to get her point across. She is trying so hard.
Tomorrow if all goes as planned, we will go home. We will go home with a feeding pump, an arsenal of medications, an IV pole, supplies for Phoebe's PICC line, and Phoebe. We will go home with Phoebe. Phoebe will get to sleep in her own bed and we will get to sleep under the same roof. It is the little things.