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Category Personal Date June 3rd, 2018

Project 365: Weeek 22

“owning your story is the bravest thing you'll ever do”

It was a long week with our little warrior and as the days, weeks, and years of her battle blur together I am more thankful than ever that I decided to bring along my camera the first time we went to Philadelphia. I didn't start blogging about it last year, I was busy trying to keep up with shoots, day to day life, and not only adjusting to having a new baby, but adjusting to having a baby with cancer. This year, the diagnosis is not a surprise one month before the start of wedding season, this year, the systems are in place so that I am ready to serve my clients and take care of Lucy without feeling quite as overwhelmed. I think it is important to share more of her story. Retinoblastoma is often detected by family members and I hope, that by spreading her story, more people will hear about this rare childhood cancer. Early intervention insures better outcomes for more patients. I am thankful that one day, Lucy will not remember most of the car rides, the chemo, the blood draws, and other unpleasantries but am glad that we have documentation of it all. One day we will look back as a family and remember the days and moments that might otherwise have disappeared in a haze of exhaustion. We will not only have a record of Lucy's strength and bravery but also a reminder that even in the most uncertain of times, there is joy. 

Day 144: It was a rainy day so we played inside. Lucy built a pillow fort and relaxed with her favorite "toy" calculator and got lots of tickles from Grandpa. 

Day 145: This girl and her books. 

Day 145: We went outside and Lucy found strawberries growing wild in the lawn. 

Day 145: Despite the cold, Lucy snuck her shoes off and meandered around the garden in her socks. Love the tracks back and forth from her swing to the peonies. 

Day 146: A trip to CHOP for a blood draw. Lucy loves when Grandpa comes along. 

Day 146: The sun was shining and the peonies were out when we got home. 

Day 147: We had an exam under anasthesia at Will's Eye to see how Lucy's tumors are reacting to the intra arterial chemotherapy. Gramby came with us into the waiting room and Lucy cuddled and played while we waited. 

Day 147: Post surgery shananigans. After a snack and some Raffi, she was back to her old self. 

Day 148: Back to Philadelphia for her intra arterial chemotherapy at Jefferson. Gramby kept her smiling while we waited again. 

Day 148: Jefferson and Wills Eye are right across the street from one another. While we wait for Lucy at Jefferson we can see the hallway we wait in while Lucy is in the OR at Wills. 

Day 149: Rise and Shine. 

Day 149: A trip to CHOP for a neulasta shot and a surprise transfusion.  

Day 149: While she recieved her transfusion we watched ballet and Lucy "danced" to the music. Dancing reminded her that she wanted to eat her toes. Love this girl. 

Day 150: Back at Gramby & Grandpa's house and it feels so good.  

See you next week! 

xo,

J

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