“There is a wisdom in children, a kind of knowing, a kind of believing, that we, as adults, do not have.” – Adam Gidwitz, A Tale Dark & Grimm
In July of 2015, Four Diamonds teen Lily was diagnosed with osteosarcoma, an extremely rare bone cancer. After rounds of chemotherapy, she endured a left leg amputation a few days before her 13th birthday. Just when they thought she might be in the clear, Lily and her family received news that her cancer had returned, this time in her hip. She continued chemotherapy, this round orally instead of intravenously, and a few days before Lily’s 15th birthday, she had a right hip replacement. Not long after, she was involved in a small accident, which resulted in a permanently dislocated right hip.
The most common place for osteosarcoma to spread and metastasize is in the lungs. Lily experienced six recurrences between her initial diagnosis in 2015 and the summer of 2019, with many of those relapses involving cancer in her lungs. This led to even more chemotherapy and countless surgeries.
The Start of Something More
During her cancer journey, Lily created an Instagram page: @lilyinchallengermode. This page was designed to share her story, including updates about her treatment, discussions about mental/physical health and all things about being a teenager living with cancer. She shared her love for gardening, theater, singing, dancing, Color Guard, Penn State CrossFit Club and so much more with her followers. This page not only served as an outlet for Lily to talk about things she was struggling with, but also was a page that connected so many others dealing with this disease.
Rick, Lily’s father, believes that Lily was chosen by God to carry the burden of cancer in order to teach and inspire others. He has no doubt that, despite how horrible pediatric cancer is, it was Lily’s destiny.
“She didn’t want the disease to define her, and it never did – she ended up using it to help others.” – Rick, Lily’s father
Lily Goes Viral
In August 2019, Lily was supposed to attend the Jonas Brothers concert in Hershey, PA. Unfortunately, she couldn’t make it because she was undergoing chemotherapy. Instead, Lily took to her social media pages, inviting the Jonas Brothers to visit her in her hospital room. Many know that her post went viral, and the Jonas Brothers did make the trip to Penn State Health Children’s Hospital to visit Lily. They signed autographs, took pictures and even asked Lily what her favorite song was. When the Jonas Brothers were leaving the hospital, Rick heard one of them say that visiting Lily was one of the coolest things they had ever experienced.
“Lily was a force of nature. She changed the life of anyone she encountered.” – Rick, Lily’s father
A Positivity Shark with Chihuahua Energy
Soon after her Jonas Brothers moment of fame, Lily had a PET scan to check on some small lesions in her lungs, but her doctors ended up finding much more. In March of 2020, about two days after the start of worldwide quarantine due to COVID-19, Lily found out that the osteosarcoma had metastasized in her lymph nodes and spine – now being labeled as Stage 4 Osteosarcoma. It was determined that Lily’s cancer was medically untreatable. She began taking a new medication aimed at maintenance: preventing the cancer from spreading further, but not targeting the existing cancer cells.
Upon hearing the news that her cancer was now labeled terminal, Lily once again took to her Instagram page. She began to host livestreams where she talked about her life, COVID-19 and answered any questions that her followers had. With the world shut down due to the pandemic, Lily talked about how hard it was not to be able to do anything but sit inside her house instead of checking things off of her long bucket list. She was stuck with her thoughts and was trying to process what the next steps of her journey may be. In a particular livestream where Lily was processing her terminal diagnosis, she said, “It’s like you’re sitting on a train track. The train is coming. You can hear it, but you can’t see it. You can’t see it coming around the corner, but you know it is.”
In many of her livestreams, Lily explained that she finally felt in the right head space and had enough energy to be able to share her story on social media. During one livestream, someone asked Lily how she stayed so positive. She acknowledged that there were many times she was not feeling happy or in a good head space, but she tried to maintain what she referred to as “Chihuahua energy” and explained that she liked to think of herself as a “positivity shark.”
“If a shark stops swimming, it dies. I feel like if I keep maintaining this ‘Chihuahua energy’ it’s harder for the negative stuff to come in.” – Lily
In May 2020, Lily started chemotherapy again. She experienced a few unexpected setbacks, including a pericardial effusion, where fluid fills the sac that surrounds your heart. On September 21, 2020, Lily passed away in the arms of her mother and father, but that was not the end of her impact on the world.
A Commitment to Conquering Childhood Cancer
Cancer can tear a family apart or bring one together, and Rick is so grateful that the latter is true of his family. He thanks his wife, Lecia, for doing it all and truly being the “rock” of the family throughout Lily’s treatment. Rick says that no one knows a child better than their parent, which lead to Lecia being the best advocate for Lily during her journey. Throughout Lily’s cancer journey, Four Diamonds provided financial and comprehensive support to not only Lily, but her entire family as well.
“If we needed a specialty doctor, Four Diamonds would help us find them and it would be covered. Therapy – psychological, emotional, music, art – Four Diamonds provided this. They even offered assistance to us and our son – all covered by Four Diamonds.” – Rick, Lily’s father
Lily’s parents recognize how meaningful the support of Four Diamonds was during her treatment. Despite not directly receiving support from Four Diamonds anymore, her family still continues to be a Partner In The Fight against childhood cancer. Rick serves as a member of Four Diamonds’ Advisory Board, describing it as the least he can do.
Lily always looked forward to Penn State THON and Mini-THON, loving the connections she formed with others through these events. Rick and Lecia participate in their local school’s Mini-THON, and Rick even helps to educate the students on fundraising ideas.
They also remain connected with her THON organization, Penn State CrossFit Club. The members became like family and even joined Lily and her parents when she spoke during Family Hour at THON 2020. Her family visits a few times a year with past members that knew Lily, whether it is attending a graduation ceremony or going to dinner. They truly appreciate the past and present members of CrossFit Club for their continued support.
Lily’s Lasting Legacy
“Lily hated the reference of cancer treatment being called a ‘battle’ or a ‘fight’ because that implied that she actually had a chance to influence this battle or win by fighting harder, which was not the case. She ‘fought’ harder than anyone and ultimately ‘lost’. But did she really lose?” – Rick, Lily’s father
Lily’s legacy lives on. She created her social media platforms to impart her wisdom on others and give an inside perspective on what pediatric cancer was to her. She wanted to be the role model for others that she would have wanted when she was diagnosed. Lily had followers from around the world that would comment on her posts sharing positivity, offering prayers and sending love.
Lily was so grateful for all of the support that she received, but she made sure to give back and provide support and advice for the same people that were supporting her in her own journey. Many of Lily’s Instagram posts share tips and advice about learning how to love yourself, be kind to yourself and others, and most importantly, find happiness.
“Even though things might be kind of hard…we can still find happiness. Find happiness in the little things, even when there are some other things working against you.” – Lily
Thank you, Lily, for sharing your wisdom with the world.
To learn more about how Four Diamonds helps families like Lily’s while facing childhood cancer, click here.