Currently, I go for doctors’ appointments every year and was entered into the survivorship clinic at CHOP. My dad does most of the traveling to conferences, but any overseas trips or visits to California, I’m in on. I go to school with the same classmates I started with in kindergarten. I was able to keep up with my work by reading with my mom and the tutoring I received from the incredible teachers at the hospital and from my local school. I keep up with my schooling even now with my travels. I hang out with my friends and I look forward every day to coming home and seeing our new chihuahua, Luna.
A couple of months after Lucy passed away, we longed to have a dog in our quiet house again. We found several adorable chihuahua puppies online and decided to make a bond with a dog again. I kept the L names and went with Luna, and I am glad I chose that. Lucy’s loving spirit is in Luna’s, and Luna is just as spoiled as Lucy was. Luna always wants to know where I am and gets just as excited as Lucy did when we get home from traveling. Unlike Lucy, Luna is a ball of energy that always keeps us on our toes. Despite her bursts of energy, she still has a love for napping. To represent them both I wear a necklace with a star that represents Lucy and a moon to represent Luna.
Being the first pediatric CAR–T cell patient means so much to me. When I was younger, I could not understand why I was receiving so much attention, but as I grew older, I began to understand how important it is for other families and their kids to hear about my story and make it more accessible around the world. I am so thankful that I was able to be the first pediatric patient for the treatment and help so many other kids make memories that they never would have been able to make. The experiences I’ve had and memories I’ve made are all because of my family, our supporters, and my doctors. I want to continue to spread my story around the world and inspire other young adults to make a difference and stand up for what they believe in. Together we can write a better story for kids and young adults around the world.
In the words of my dad, remember to smile every day. You never know when something could change in an instant.
Tom and Emily at camp before diagnosis (age three).
Emily swinging on the swing set Tom built (age four).
Emily two weeks before diagnosis (age five). We went back through photos after she was diagnosed and noticed that in this photo she has bruises on her legs, so she would have had leukemia at this time but we didn’t know yet.
At Hershey Medical Center a few days after diagnosis.
At Hershey Medical Center with Jasper the therapy dog after her haircut. She has the PICC line in her arm.
At Hershey Medical Center. She has the PICC line in her arm. Tom is in the background.
Emily and Lucy.
Emily with her Mediport.
Emily’s first day of kindergarten.
Tom, Kari, and Emily in NYC at the Algonquin Hotel.
Emily shaving Tom’s head in the hospital
Waiting in the oncology outpatient clinic at Hershey Medical Center after Emily relapsed. Child life specialists kept the kids busy during the long days of appointments and treatments.
Emily in her butterfly costume trick-or-treating in the hospital.
Tom, Kari, Emily, and Lucy.
The typical number of medications that Emily would get through her IV at one particular time of the day. (This would be repeated several times a day.)
Lucy’s visit to Hershey Medical Center.
Emily passing the time, reading her book to her stuffed animals (including the stuffed Lucy dog)—long days at CHOP waiting for the CAR T cells to be ready. She was very sick from chemo here.
Emily connected to the apheresis machine to remove the T cells from her blood.
CAR–T cell infusion day! Dr. Grupp giving Emily the CAR T cells.
Community support at a prayer vigil.
Tom and Kari holding Emily’s hand while Emily fought for her life in the PICU.
Penn State students who sang an early “Happy Birthday” to Emily in the HUB.
The banner Becky and Ariana made and had people sign outside the student bookstore.
Emily in the art room at CHOP, painting and recovering after being in the PICU.
Tom, Kari, Emily, and Dr. Bruce Levine the day before we left CHOP to come home.
Homecoming—Lucy licking Emily’s face and greeting her.
Homecoming—people standing outside in the rain, waiting to see us drive through town and bring Emily home.
At the White House the day
