Dear Lily,

When I first heard of you, you were a story. A name without a face. A survivor. When Ariella was initially diagnosed our doctor gave me your mom’s name and number. He told me about this amazing girl named Lily, who was a survivor of Ewing’s Sarcoma. He told me how great you were doing and that your mom would be more than happy to talk with me about anything. At this point you were more than 5 years cancer free (from what I recall). The doctor gave me major hope that day.

It took a little while but I did eventually get in touch with your mom. We didn’t talk much but it was comforting to know someone who had been in the same situation. Then one day Ariella mentioned a girl named Lily that she met in clinic. Didn’t say much, just that she met a nice girl. The next time I was there I met you and your mom. It took several times after that to put together that you were the Lily the doctor had told me about. And I was devastated when I realized that. Because it meant that you had relapsed, even though you should have been considered “cured.”. But I continued to have hope. Because you seemed so strong and happy anytime we saw you in clinic. You always had a smile on your face. You would come in with your text books and do school work, or play games with your family. It warmed my heart. Ariella always checked the board to see if you were going to be in clinic when we were there. Even if she didn’t say much, she always wanted to say hi. I’m sure she looked up to you and related well being that you both had Ewing’s. And though you were older, you were one of the closest in age to Ariella among those she saw regularly. Ariella loved doing the photo shoots with you and it was you that helped her build her confidence to do the pictures with her bald head. She saw you frequently in clinic rocking that look and commented on more than one occasion about how pretty you were. You had a confidence that is hard to come by and Ariella admired you.

Even though you were going through your own stuff you always took the time to reply to Ariella’s texts. She was happy to have someone to ask questions to and commiserate with. It helped her to not feel so alone. Because the truth is, no one who hasn’t had cancer could understand what any of you went through. I’m glad she had you.

When I saw you at CureFest I was surprised and devastated to hear that your treatment wasn’t working. Surprised because you were mostly smiles and just exuded pure joy. You were happy to reunite with your friends and passionate to advocate for childhood cancer research. You spoke beautifully and eloquently and it was heartbreaking because it was evident that you were also hurting. Despite your illness you made it a point to come to Ariella’s birthday celebration at Build-a-Bear. That was so special to me and I hope I effectively conveyed my appreciation to you that day. It can’t have been easy to be confronted with the death of someone who had the same illness as you. But honestly, that’s where all you kids have amazed me. You forge friendships knowing the outcome is unknown. Knowing you may lose in the most permanent way many of those friends. And yet that doesn’t stop you from loving them. And you support each other through it all. Kids shouldn’t die. And kids shouldn’t see their friends die. We had to tell Ariella of several children that had died, only one that she had personally met. And I hated to do it every time. Because it would force her to face her own mortality. Yet all of you had the brightest spirits. Nothing could dim your light.

Friendships forged in the cancer community are different than any other relationships. I was grateful to meet you and your mom. You both always had bright, beautiful, smiles and being around you just made it feel like everything was going to be okay. When I heard you relapsed again the same day Ariella died, I was heartbroken all over again. Because I cared about you too. You were our original hope story and I needed you to be okay. Someone has to survive, right? If not my daughter than at least someone she loved and cared about. Someone we all cared about. You heard that your friend died and then your world fell apart once again. But that didn’t stop you from making your voice heard. You were an inspiration, not just to Ariella and your other friends, but to me as well.

I was at work when I heard that you died. It was the end of a day that was already a struggle for me. I hopped onto Facebook briefly when I was making copies and I saw your mom’s post. And the tears I was fighting all day finally broke free. I am heartbroken for your family and friends. Another family ripped apart by this devastating disease. And I am so sad for you. You had so much potential. You were going to do great things. You had already done so many great things. The world lost another amazing person. It was an honor to know you Lily. The world is not as bright without you in it. Thank you for inspiring me and inspiring Ariella. I hope you two are dancing and singing and doing your make-up together. You will be missed.