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SuperSibs: In Their Own Words

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  • jamie and jillian
    Jamie was just 7 years old, when her sister Jillian died. It was just over 15 years ago.
  • caitlin and lauren

By: Trish Adkins

Jamie and Caitlin don’t know each other; but they share a journey. Both women lost their sisters to childhood cancer. They are also both Ambassadors for the SuperSibs program which is dedicated to comforting, encouraging and empowering siblings of children with cancer, so they can face the future with courage and hope. Ambassadors add their own voice and experiences to the fight and helps raise awareness about curing childhood cancer. 

Not only is this empowering and cathartic for the Ambassador, but it will show the breadth of childhood cancer’s impact and bring forward one more reason to find a cure!

“Alex's Lemonade Stand, along with the SuperSibs Ambassador program has given families, and siblings a platform to share the stories of our loved ones, to share their legacy, and to honor them,” said Jamie. 

Both Caitlin and Jamie shared their stories with us:

Caitlin Nowicki

I am the surviving twin of Lauren Nowicki, who was born with neuroblastoma. Her treatment took place as an infant, and she lived cancer free most of her life. Lauren developed cardiomyopathy as a teenager, a late effect from the treatment she received as a baby. After a four month stay in the hospital waiting to receive a heart transplant, she passed away just nineteen days after our sixteenth birthday. 

I will always remember Lauren’s competitiveness. She was intelligent and loved sports, most notably and memorably, basketball. She excelled both academically and athletically. My fondest and most beautiful memories are of our childhood summers spent on Martha’s Vineyard, fishing, long days spent on the beach, lots of candy, and late night video games. 

I was a quiet teenager, and writing soon became a form of therapy for me to cope. I kept journals of all my feelings, which later turned into poetry and essays. Alex’s Lemonade Stand Foundation, as well as the SuperSib Ambassador Program, are extremely important to me for immeasurable reasons.

The SuperSib Ambassador program is a group of other individuals impacted by childhood cancer, who share and support one another, with a common goal to spread awareness, raise funds for sufficient treatments, and ultimately offer all children a cancer free life. I would tell other siblings of children with cancer to be hopeful as well as mindful of their sibling’s plight; to speak openly with their parents about their fears and emotions, and to understand the capacity of the untimely diagnosis and battle their sibling must now endure. I would also tell them to form a solid support system, and to share when it all feels overwhelming. That they too are dealing with the unimaginable. 

It can be a very isolating experience, and it is most definitely a life changing experience. To each and every one of these siblings, stay strong, and know that you are not alone. There are communities of us out there who stand to hold up each other, and connect in our experiences. 

Jamie Zuelsdorf

Jillian Zuelsdorff is the strongest, most courageous, and kindest person I have ever known, and being the big sister to my hero and my role model is an honor. My name is Jamie Zuelsdorff, though Jillian referred to me exclusively as “Mamie”. I am the sibling of a Childhood Cancer Warrior. My sister Jillian battled neuroblastoma. I am the one who pushed her IV pole while she rode tricycles in the hospital hallways, who read Goodnight Moon every night before bed, who told her it's okay to take her medicine and wear her mask after chemotherapy. We spent our days collecting marbles and rocks, eagerly waiting for the little egg timer our mom would set to go off because then we knew it was our turn on the little yellow tricycle at the Ronald McDonald House. Her hospital room had a mural of an apple tree, and she handed us those "apples," laughing while we enjoyed our own little picnic with all of her Elmo dolls and sippy cups of Cherry Kool-Aid. Jillian had an amazing talent of always finding joy in the little things.

 My parents, our whole family for that matter, felt the reverberation of losing Jillian, it shook us all to our core. For me, as her big sister, a part of me died with her, and a part of me remains missing to this day. I lost my best and only friend, and my soulmate. It seems that siblings sometimes get forgotten about, siblings' pain and grief isn't always acknowledged. 

It has been 15 years since Jillian has passed away, and the missing part of me still aches, and I still grieve for her. I still have her yellow pillowcase, the last pillowcase she used, and I sleep on it every night.  The fleece Elmo blanket my 1st grade class helped make never leaves me side. I have her bravery beads, and even her marble collection. I have a monarch butterfly tattoo over my heart so I can keep carrying her with me, so every time my heart beats, it beats for her, too. 

I am going to school to be a Child Life Specialist - to carry on her legacy, and to help other siblings and patients find joy in the small things, just like Jilly. 

I know that being the sibling of someone fighting cancer is an important role. We are with them every step, making sure they laugh, holding them when they're in pain, encouraging them and holding them up when they need it most. We advocate on their behalf, for their honor, for their memory, because we know firsthand what this pain is like, and we don't want anyone else to know that kind of pain. 

To siblings like me, the ones who have their other half missing - your grief, no matter how many years it's been, is valid. It's okay to be angry and it's okay to cry. Cherish their favorite things, celebrate their life, their legacy, keep them with you. We carry their fight now. Raise your voices, spread awareness, fight for change. The grief you feel is a catalyst, let it guide you to make sure no other siblings, no other families have to feel this unexplainable pain. We fight for a cure, we fight for a change. Be bold, and for all those we've lost, for all those fighting, for our survivors, go gold. 

Learn More About SuperSibs.