We are still here. I have tried to write but, lately, by the end of the day, I am so exhausted that I can barely string a sentence together. All of this stress seems to be catching up to me and Phoebe has been busy. Last Wednesday she had a bone marrow aspiration. This test was done to see how well her leukemia responded to the study drug. There is a repeat aspirate scheduled at the end of the clinical trial to determine the results when the study drug is combined with chemo. The results so far are promising. After months of seeing the same level of disease or more recently, more disease in Phoebe's bone marrow - these results are slightly better. Four doses of the study drug dropped the percentage of leukemia in Phoebe's bone marrow from 70-80% to 59% and improved the chimerism from just 8% donor cells to 38%. Better. Still a very long way to go, but better and we are clinging to better with all that we have.
Shortly after we received this news, Phoebe spiked a fever. No time to breathe or take in the better news, Phoebe was admitted to the hospital. Blood cultures were drawn, doctors came to listen to and look at Phoebe - she cried and told them to leave her alone; that she wanted to go home. We worried. No source of the fevers was found, Phoebe refused to eat the "hospital food" and she became more frustrated and depressed as the days passed. After just 24 hours without a fever and no answers, we asked if she could go home. The doctors reluctantly agreed but the transfer from in patient to out was not at all seamless and we ended up spending most of the weekend in the medicine room at St.Jude. Sometimes things just don't go as planned. Yesterday we arrived at the hospital at 10am and left after midnight - all fourteen hours were spent in one tiny room as Phoebe is still isolated. Sometimes I feel like this is one giant social experiment - how many hours can one family of four spend in a tiny room before someone loses it? How much lego can two kids build in 14 hours?
Thankfully, today is a day off and Phoebe appears to be feeling better. Her quality of life is very important to us and she is a different child when she's at home. She hasn't had any more fevers and she ended her hunger strike thanks to some great Canadian snacks that arrived this morning (thank-you!!). As I write this she is painting with Mae and for the first time since Thursday, I feel like I can breathe.
The plan moving forward is to complete the clinical trial - Phoebe has two doses of the study drug remaining and will finish on Friday. After that, we will repeat the bone marrow tests and hope and pray for good results.
We are anxious but hopeful. Always hopeful. While all of this was happening, we moved out of our apartment at the Target House so that they could do minor renovations and move in some new furniture and art work. We came home after our marathon day yesterday to this in Mae and Phoebe's room ...
Every little thing gonna be all right.