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Category Life with Julia Jane Date June 3rd, 2018

365 Project: Week 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 ahead of time to serve my clients and take care of Lucy. I think it is important, even though it is hard, 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 ensures 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: Rainy days and hot mugs of tea go perfectly together!

Day 145: It was cold but not rainy. Lucy managed to slip out of her shoes and I just loved the little tracks her feet made while she wandered back and forth between her swing and the peonies. 

Day 146: A trip to CHOP for a blood draw. Grandpa kept lucy busy with a favorite book. 

Day 146: The sun was out and there was time to play when we got home from Philadelphia. 

Day 147: An early morning appointment at Wills Eye to see how Lucy's tumors are responding to the intra arterial chemotherapy. Gramby kept Lucy happy while we waited for her turn in the OR. 

Day 147: After a sleepy car ride home and a few hours of eyes swollen shut Lucy was back to her old self. Smiling and making "phone calls". 

 

Day 148: A trip to Jefferson for intra arterial chemotherapy. Gramby kept Lucy happy while we waited for her turn in the OR. While we wait for Lucy at Jefferson, we can see the spot where we wait at Wills Eye and sometimes, parents sitting in the very chairs we so often sit in.

Day 149: We have to stay overnight in Phaladelphia after intra arterial chemo and we never get much sleep. Lots of coffee for the adults and some quiet play time for Lucy helps us all start the day. 

Day 149: We visited CHOP for a nuelasta shot and found out Lucy needed a transfusion. 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 to pieces. 

Day 150: So happy to be back at Gramby and Grandpa's house. 

 

See you next week!

xo,

J

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