It's been a challenging week and I thought, for a second, that I would skip the project. That life was a little too complicated to share. But, then I thought, that the point of writing a 365 story, is just to tell the truth. It doesn't have to be shiny, glossy or pretty all the time, because life isn't perfect. So here we go, welcome to week two: the good, the bad, & the messy.
Day 7: It's almost time for the big red bow to come off the front door. But I'm not quite ready yet.
Day 8: We drove to NJ before Lucy's next EUA (exam under anesthesia) with Dr. Shields at Will's Eye Hospital. She sat on the floor and played with her favorite alphabet cards.
Day 9: We visited CHOP for routine blood work and to see Lucy's oncologist. On the way home, we stopped at the shrine of Padre Pio for some quiet reflection.
Day 10: We didn't get the news we were hoping for. Lucy had a recurrence of tumors and was marked to begin intra arterial chemotherapy starting in two days. The sticker shows which eye they would start with and the dosage needed. We were heartbroken at the news, but Lucy, as always, was cheerful. She is perfect.
Day 11: Here's Lucy the Warrior, the night before her first treatment. We were all busy being scared and Lucy was busy playing peek-a-boo behind the table. (Her eye is marked for treatment and dosage).
Day 12: We wait. The rain fell hard and fast all day in Philadelphia. Lucy was in treatment and we waited. I stared out the window and counted colorful umbrellas. Anything to try to pass the time and keep my mind occupied.
Day 13: We had to stay in a hotel room near the hospital. Lucy woke up in a great mood and it was business as usual for her. We smiled with relief as she crawled around the hotel bed and stopped to eat her toes.
We will need to go to Philadelphia every 20 days for Lucy's treatment. If this is the first you are hearing about Lucy's retinoblastoma journey, and you want to read more, you can follow along on facebook and instagram with #lucythewarrior
See you all next week.
xo,
Julia
