Sophia’s Story
by Christine Weeks, PUBLISHER, Lincoln Kids
The story begins eleven years ago.
Elizabeth Drive.
Meadowlane.
Summer 2011
Sophia, Age 5
Sophia Jeneske moved in (with her family, of course) across the street from ours. Sophia was five at the time, and the same age as my twin daughters, Miley and Zoe. They became fast friends and spent most of their days in giggle fits, dress-up clothes, and checking in to see if Murray (the grandpa of the neighborhood) could fix their trikes or hook them up with messy, juicy, for-sure-to-be red popsicles.
Those three shared some sweet moments in their early childhood and we loved having Sophia fewer than 50 steps away. She was (still is) incredibly sweet and easy to love. One of those littles that you will always hold close to your heart.
As life would have it, sometimes incredibly hard things happen to the people you love. Sophia experienced a life-changing medical journey this year. One that you wish would never have happened but she’s here to convey the silver linings, and how she came through with a new perspective on life.
Flash forward a few years.
Mesaverde Drive.
Taylor Meadows.
Summer 2022
Sophia, Age 14
It was late July 2022, and Sophia was waking up to summer like all teenagers – after the sun came up and ready to do teenage things: listen to music, hang with friends, and enjoy the outdoors. But right when she woke up, she noticed that her right eye was swollen. She showed it to her mom, AKA Super-Mom Jess, who took her in right away to get some medication. Jess and the medical provider thought it was an allergic reaction, so they all hoped that it would resolve with meds by the next day.
Unfortunately, that was not the case. Twenty-four hours later, Sophia’s eye was more swollen than the day before, and cause for concern rumbled in their hearts. Jess reached out to her healthcare provider and she didn’t hesitate to take the next steps. She referred Sophia to have a CT scan so they could get a better look at what was causing the inflammation.
The results came swiftly and painfully; it wasn’t an infection but rather a large mass that was causing havoc in her eye socket. She was sent immediately to Children’s Hospital for more tests (insert long days, little food, ice chips, and unanswered questions) and then transferred to UNMC to be under the care of Dr. Chundury, an Oculoplastic Surgeon, to perform the specialized biopsy.
Four more long days and nights followed before the actual diagnosis would be determined. Those four days felt like an eternity to Sophia and her family. And then it came. And so did the darkness, shock, and her new path forward.
“Sophia, you have a very rare cancer called orbital rhabdomyoma sarcoma,” said the Pediatric Intensivist. “There are only 35 cases reported annually.”
Between the rareness of her cancer, and the fact that she has cancer in her eye, the Jeneskes were trusting that God would provide in some way, somehow a clear path forward.
And that’s exactly what happened.
The miracle in this difficult situation was that Jessica’s aunt, “just happened” to be a retired radiation oncologist and worked at a Cancer Center that provided Proton Therapy - precision radiation therapy - that is not available in Nebraska. Because Sophia’s cancer was in one eye socket, it was imperative that the radiation be delivered to exactly the right place and not outside of those boundaries, which could damage her other eye and her brain tissue.
Sophia’s pediatric cancer team decided that she would start chemo at UNMC for 12 weeks and then Sophia would go out to San Diego to be treated at the California Proton Center, affiliated with Rady Children’s Hospital.
She would stay with her aunt (and mother) who had expertise in this field and work with leading medical providers as they fought this cancer.
While in San Diego, Sophia was also able to have her chemo treatments and by the time you read this article, all of her treatments have officially ended.
When I interviewed her, she was still in the midst of treatment. Tired, confused by the cards this life had dealt her, and hopeful that she can move on with a new normal. The chemo and radiation treatments took their toll on her little frame: loss of hair, burnt skin from radiation, isolation from friends due to treatment, and the mental gymnastics of fighting through a cancer so brutal.
We’re hopeful for Sophia and reminded to reach out to those who are suffering even if it’s just a call or text. These years for sick kids can feel like decades and it’s good to pour out love and support to help them through.
To send a note of encouragement to Sophia, you can mail them to us and we will get them to Sophia and her family:
