March 10/11

Throughout the night, alarms would go off. Oxygen levels low. Heart rate too high. Nurses would come in and out. Blood pressure would be taken. Penn was placed on a morphine infusion to alleviate her pain, but we knew this was the last place she wanted to be.

We advocated to take Penn home. We agreed to administer all of her medications. Our number one priority is that Penn is comfortable and we reduce her anxiety. The only way we could do this, is to take her back home to the white farmhouse. After the discharge papers were signed, I carried Penn and cried all the way to the car . We ran away from the place that has saved her so many times but has caused her so much trauma.

The first evening back at home, Penn would wake up in the middle of the night. She would sit up, look around and fall back to sleep. No crying. No anxiety. She knew she was home. We made the right decision, after coming up with a pain management plan. Due to her cancer spreading rapidly, it was only a matter of time before she started to develop seizures. We began to notice small seizures in her eyes and then her lower jaw. Her right arm had no mobility and it looks like her eye sight is gone. We will continue to be there for her. Read her stories. Say our good night prayers as a family. Sing Twinkle Twinkle Little Star. Give four kisses because she’s four years old. For now, we keep moving forward and take it day by day. We are together, and that’s all that matters.

Photos taken on March 6. Two days before Penn’s MRI. Zoo play date with the cousins.