Phoebe had a good day and that means I had a good day. Going to church on Easter Sunday as an incomplete family was not my favorite, but all of us spending the day in her hospital room afterward was great. She looks so clear in her eyes now that the Methadone and Valium are weaned down so low. Her speech is more clear and she initiates conversation, even tells the nurse “that’s annoying!” when her monitor beeps insistently. We blew bubbles and colored and played with her new bracelets, we walked the halls in her pink stroller all dressed up in her Hello Kitty hair bow and we sat for a time in front of the fire place in the lounge. But my favorite part of the day was when Phoebe and Deacon got into an argument. I LOVED THIS because it means Phoebe is feeling herself! Deacon was coloring with a marker and Phoebe took it from him, “Mine!” she scowled. “No, Phoebe, I’m using that!” said Deacon. “Mine Deacon!” she said again, furrowing her brow..and so it went for a minute or so. And I just watched, and smiled. Her spirits are high and her personality is emerging again, but her physical strength is very diminished.

Physical therapy was tough today. She wants to stand up and she can’t. Each day we hold her under her arms and lift, and wait to see if she will hold some of her own weight with her legs, and each day she has no strength and crumbles back into the chair in tears. We try again and again, and she cries again and again. She braces herself, even scoots forward on the chair she is so ready to stand and play and go places, and it is heartbreaking to watch her feel so sad when her legs don’t work the way she so desperately wants them to. This weakness is a mystery to the doctors. She was intubated for a couple of weeks yes, and that would cause some weakness, but they now suspect that her breathing issues are because of a weak diaphragm and no one can explain that. Steroids also cause muscle weakness, but not usually to this degree, so once again Phoebe is unique.

She has had some vomiting the past day and a half and her white cell count is high so please pray against any type of infection. She has not had fever and she seems to be feeling great which are good signs, but we are entering in to the low count part of her chemo cycle when she will be very vulnerable. At this point in her cycle she is no longer allowed to have visitors outside of the immediate family, the infection risk is too high.

The pulomonologist has Phoebe on a bi-pap machine at night to help gently push air into her lungs and help expand them and she is doing very well with that. She is actually sleeping at night and awake during the day and we are not quite sure what to do with ourselves. Just when we had gotten used to the 3 am party hour, she changes the game. Her lung x-rays look better already and her breathing seems improved, so we are glad to be doing something to improve her respiratory status.

As always, it’s a mixed bag…in many ways she is doing great, in other ways she still struggles. Please keep Phoebe in your hearts and prayers these next few days as things get sticky. We are praying for smooth sailing and an uneventful neutropenic time.

~Amey