Please read Jailyn and Lilly’s story below to see how they found strength, resilience, and perspective through an incredibly difficult journey. You will get to know each sister and their own unique talents and beauties. Jailyn is introspective, cerebral and expressive- a gifted writer and accomplished musician. Lilly is playful, creative and perhaps most of all resilient- she carries a lightness that belies the difficulty that she has endured. Friends of Karen is honored to have supported their family along the way, helping ensure their light could continue to shine through even the darkest moments.

Can you tell me about your sister? How would you describe her?

Jailyn: Lilly is a very emotional person in a good way. She is the light of the house and my life. We definitely tease each other but she is silly, sweet and thoughtful.

Lilly: My sissy! She is very kind. She teaches me new things and she’s smart.

Can you tell me about what it was like when Lilly was first diagnosed?

Jailyn: It was very earth shattering. You see the St. Jude commercials but you never think it would happen to you or your family. I just kept thinking; “What do we do?!”

Lilly:  I was feeling very dizzy and tired.

How did your life change?

Jailyn: It really showed us people’s true colors. We saw who really showed up for us. Some days were a lot harder than others. We were focused on Lilly. I delayed going to college and that was hard seeing my classmates move on. I felt pressure to be strong for my family.

What or who helped?

Jailyn: Friends of Karen. We would see Friends of Karen Social Worker, Beth at the clinic. She helped my mom and stuff got delivered to us- like birthday gifts and school supplies. Christmas was different that first year but Friends of Karen sent gifts.  Having Sibling Support (Siobhan) lifted a lot off of my shoulders. Having someone to talk to gave me a clearer mind and more confidence- so things didn’t fester. I felt a lot of emotions- anxiety, fear, stress, nervousness, and sadness because I felt pretty helpless. It was tough watching the light from Lilly fade. She completely lost her hair and felt self conscious.

Lilly: Being with my mommy of course! My mom was always there. Jailyn helped me by making me laugh and doing silly things. She would play with me. The doctors helped me get better and I loved doing art with Siobhan.

Do you have any advice for children in a similar situation?

Jailyn: It is ok not to know what to do or how to feel. There is no gold standard or precedent. Accept that it’s ok to admit that you aren’t fine and need assistance.

Lilly: It’s ok, don’t be scared. You’ll get better soon.

What do you feel hopeful about?

Jailyn: I feel hopeful that Lilly is finally getting back to being ok- no more shots, ports etc.  I’m hoping that college will be ok- I’m playing the bass clarinet.  I’m proud that I am able to be someone for Lilly to lean on. I don’t regret deferring school. There would have been too much for mom to do on her own.

Lilly: I feel hopeful about looking forward to the summer. We are going somewhere to a special place.