We are back at the Target House, returning to St.Jude daily for labs and an antifungal medicine that can only be given in the hospital. We are busy - caring for Phoebe is a full-time job, but we get to sleep in our own beds at night. It's the little things.
Against all odds, Phoebe has been doing well. She is getting stronger, and although she has a long way to go, things are improving. She is still weak, but she surprised us by riding her bike the first day we were home, and today she walked for the first time in three weeks. The fungal lesions are very slowly healing. It is a painful and slow process but we are starting to see some improvements.
Phoebe's bone marrow results show a very low level of disease (less than 1%) and an improved chimerism. I like to think the leukemia is "stable" and we are relieved that the clinical trial was successful. There are some signs of count recovery - Phoebe is maintaining a very low ANC and needing fewer platelet and blood transfusions. She will receive another unit of my granulocytes on Friday and after that ... decisions and plans are made one day at a time.
We are hanging on, grateful for progress and hopeful for continued miracles.
And now from Phoebe's Daddy who can tell it like it is far better than I can ...
"I couldn't hold back the tears today. 3 weeks ago Phoebe was diagnosed with a very serious systemic fungal infection. Fusarium fungemia. If you google it you'll find that in someone like Phoebe who has no immune system there is a 100% death rate. The first thing the doctors did was to call in the quality of life team to ask us our expectations of the hospital when Phoebe's life was to come to an end. Instead, we fought for treatment using Jenny's white cells and 4 anti fungal antibiotics to build a bridge so Phoebe could gain some time for her own immune system to have a chance to return as we get further out from the last experimental trial which she responded well to. We fought for life. Today I cried. I cried because the bridge we built is holding. Phoebe's blood work today shows her immune system is in recovery and with it we will defeat this horrendous fungus. I absolutely love how Phoebe continues to put doctors on the side of hope. I believe".