Has the world always been kind to everyone? Maybe not. Life comes with its twists and turns. So, there is a constant search for happiness in what appears to be a rather unpredictable world. Part of the uncertainties that could hit a human and trigger existential questions is cancer. Imagine if this blight finds its home in the body of a small child. What an unsettling experience!
Did you know that this is relatively common? At least 1 in every 285 children has cancer in the United States. In fact, between 2020 and 2050, there is a predicted number of 13.7 million cases of childhood cancer cases. But is this the end of the road for childhood cancer patients? Should it be? How can they find light in such a dark tunnel that the new diagnosis has brought to them?
Leia was your everyday bubbly child. Happy and gleeful were some words that could describe her. She has a pretty normal childhood, with her father being a commander in the navy. And she lived in the comfort of a warm and observant mom. However, everything began to fall apart when her mum started noticing a shift in how her eyes were set. She would take pictures of Leia and notice that something was off with her retina. It looked to her as if there was a drift in her daughter’s eye. Leia said, “she noticed that my left eye and the retina looked different than the right eye.” She then sprung to action and took Leia to the pediatrician. Leia got an eye patch at the hospital to manage her eye issue. But she “was not a fan of the eye patch.” She had the eye patch on for a while. But she continued to have discomfort. This discomfort made her resort to seeing a specialist instead. This was where she and her mother heard their lives’ most defining professional statements. The specialist looked at her, closed his door, and said, “This is the least favorite part about my job, but I could tell you that your baby has a huge tumor wrapped on her left retina.”
This singular statement spiraled into a series of traveling, medical consultations, and swift cancer treatment. She was diagnosed with retinoblastoma. Thus, she had to leave her home in Ohio for treatment at Wells Eye Hospital, Philadelphia, Pennsylvania, with Dr. Carol Shield. Within two days of hearing the news, this little girl was on a full course of chemotherapy. The treatment for her retinoblastoma went on for a period. In all, she had about six rounds of chemotherapy and underwent about 26 surgeries. However, in six months, the cancer was back.
Because of the relapse, Leia had to go through radiation. A very active isotope was placed on her left eye, retina, precisely. The isotope placement was aimed at attacking and mortifying the cancer cells. But that came at a cost. Leia lost her left eye after a short while.
These childhood cancer experiences became a burning passion in Leia, a passion to see that everyone who presently goes through what she went through has a much better experience. Most kids battling cancer would have to cope with the post-treatment stress just like Leia did. Especially if you are a teenager, the pressure is more. Most childhood cancer patients have to cope with figuring life out, a chemo brain, and teenage clout of “peers that don’t know the words, MRI, cat scan, radiation surgery. They don’t know what it feels like to be sleeping in a hospital bed or to be rolled into surgery while your mom and dad can’t come with you.”
On her 18th birthday, Leia created the Leia’s Kids Foundation. And the goal was to be “boots on the ground with the kids and give them financial systems, give them a dream party, work with the siblings, be there for the mom and dad, counsel them, you know, assist them in any need.” When she started this drive, she was a member of the track team, an average high schooler, and had a modeling career and many initiatives she participated in. And at the same time, she was a visioner brainstorming “how to run a nonprofit and form a board.” Even though most people her age didn’t understand what she was doing, she still kept on with the passion in her heart for bringing joy to families battling childhood cancer.
She noted that she “started donating to people without people knowing. And then it was Easter Sunday. And like two days prior, I had a huge track meet in the middle of town. And, then two days later we hit the newspaper on Easter Sunday that the Leia’s Kids foundation is serving families in our area. And we got some momentum as, you know, as you do and the news, and we started helping more families.” Every kid, family, or sibling she was able to help ease the cancer journey and experience made the whole initiative worth it for her.
However, a few months into her 18th birthday, she had to move across the country. With this transition came a pause for the foundation as most of the supporters were from the little town she was in. Now she got exposed to more immersive nonprofit work as a catholic missionary in New York. This internship work opened her up to many opportunities to share her story and reach out to a lot of kids through bus tours across the United States. But like the previous experience, she later had to relocate to Texas amid COVID. So, she had to lay low for a while. And that was where she rebuilt Leia’s Kids Foundation from the ground up. So, for a year and a half now, the foundation has grown, forged connections, and made Texas their base community.
Their activities in the community are geared towards helping the kids with cancer to see that “this sucks, but this is how we’re going to get through it.” They help them to focus on goodness and not the suffering. Thus, they hold parties for financial assistance purposes. They also have a lot of resources for these teenagers and kids to arm themselves with. They have a podcast, for example. According to her, “we created our very own princess who follows the message of Leia’s kids. And her name is princess Marygold. She’s the first-ever childhood cancer princess. And so we have released her and we’re very excited for what is to come with princess Marygold.”
Leia’s Kids Foundation also has a journal called “my battle pan journal.” These are “nine-week interactive journals for kids to fill out as they fight cancer, as their highs, their lows, they can point to the pain on their body, how they feel, how did they sleep their sections for mom and dad to write in.”
With her foundation, Leia is on a solid mission to see every child with cancer, their sibling, their parents, friends, and other stakeholders have a much easier procession. The kids are crowned consistently to remind them that they are not victims but victors. They can keep their eyes on the light of goodness and process their pain and suffering through that lens.
So, several drives, creative ideas, celebrity meet-ups, and photo shoots are aimed toward this. The CureFest is coming up, a huge childhood cancer hub event conference. This is alongside much other legislative and collaborative work they have underground. They need more hands and are open to receiving people to join them as they seek to bring joy to more families battling childhood cancer.
