Eleanor’s story

Around 10 months old, Eleanor started having “episodes,” where she would hunch her shoulders and cry when going from sitting to standing. The episodes were extremely brief and she’d return to smiles as soon we picked her up. We couldn’t tell if she was actually experiencing pain, or if she was just looking for attention. We discussed it at her 12 month check up, and opted to “watch and wait” since it wasn’t occurring all that frequently.

Unfortunately, over the next few months, we started seeing her do this more often. We discussed it again at her 15 month check up, and agreed upon completing a spinal and hip X-ray (though, it truly felt like a shot in the dark - we suspected she was having pain, but couldn’t tell where it was coming from and, due to her age, she obviously couldn’t communicate the issue to us).

The X-ray showed mild scoliosis. Our orthopedic surgeon informed us that, while mild, infantile scoliosis is imperative to treat before she turns two if it does not improve on its own. He gave us the option of completing an MRI now, versus in six months when we repeat her x-ray; the purpose of the MRI was to rule out a few other conditions that can cause scoliosis (it would tell us if scoliosis was the primary problem, or was it occurring secondary to another problem). The downside to completing the MRI was the need for general anesthesia due to her age. Given Tyler’s profession, we didn’t love the idea of general anesthesia at this age, but we also both agreed it was more important to rule out anything serious as soon as possible.

We had to wait six weeks for the MRI. During this time, I went down the rabbit hole researching the conditions we were ruling out. I prepared myself for an abnormal MRI, as one of the conditions seemed very plausible for her to have… but I hadn’t prepared myself for an abnormal MRI showing something completely different.

Anyone who knows Tyler and I knows Tyler is the more laidback one. However, while sitting in the OR waiting room, it was Tyler who became antsy after what seemed like an abnormally long time for Nel to complete her testing. It was shortly after Tyler went up to the waiting room receptionist that our anesthesiologist came to sit down by us. As an FYI, it is not normal for an anesthesiologist to deliver test results. It was in this moment I knew something was seriously wrong with our baby girl. 

I will never forget when the anesthesiologist told us, “there’s a large lesion on her spine.” 

A radiologist briefly met with us and said something along the lines of “if this is the tumor we think it is, it’s the best kind you can have. That’s the silver lining in all of this.” We were then whisked away and immediately taken to meet with a neurosurgeon and neuro-oncologist. They couldn’t believe that: A) anything was wrong with Eleanor, as she was running around like a feral baby in the clinic room, and B) that we were able to pick up on anything being wrong given her vague singular symptom.

Her entire medical team suspected pilocytic astrocytoma, a large tumor covering her spinal cord from C6/7-T4. For all of our non-medical friends and family, this is a really terrible place to have a tumor. While the medical literature labels this a benign tumor, it’s still a group of cells located somewhere they shouldn’t be, and requires surgery and/or chemotherapy for treatment. Imagine my face when someone tells me, “it’s not technically cancer, but we still have to treat it like cancer.” 

One week after her MRI (and six days after her three year old brother had a previously scheduled tonsillectomy), Eleanor had surgery to remove as much of the tumor as possible. Thankfully, based off of a post-operative MRI, we think they were able to remove most (if not all) of the tumor!! I will spare you the medical jargon of what actually occurred during her surgery, but she woke up from surgery unable to move her lower extremities. This was expected. Her upper extremities were not affected at all. Her medical team has always been hopeful regarding her ability to regain function, but no one knew exactly how much she would regain and/or what limitations she may face. 

Our girl has loved to dance since she started walking at 10 months; her favorite song is JT’s “can’t stop the feeling.” I cried as I held her in the ICU, fearful that she would never be able to dance again.

Eleanor spent 33 days in the hospital, the majority of which were spent on the inpatient rehab unit undergoing intensive rehab (6 hours/day) to optimize her recovery. She had a large team of therapists who worked tirelessly through her fear, tears, pain, and sass. Eleanor was unable to even move her toes until three days post-op, and she left the hospital able to walk with the assistance of some cute leg braces and a reverse walker. I’m also happy to report that she is back to dancing (now loves listening to Posty with dad and twenty one pilots with mom). ❤

Now that she is home, she continues with physical therapy and occupational therapy 3x/week (soon to be 2x/week because she is a “super human” in the words of one of her PTs ). She will require multiple MRIs each year to monitor for tumor recurrence; while these will eventually space out with time, she will need MRIs for the rest of her life. She will also follow with a multitude of specialists for the foreseeable future. 

If you are still reading, thank you! I’m almost done. Tyler and I are running the Nationwide Half Marathon in celebration of our sweet girl, as well as for all of the other children who have/had to navigate the unfair world of childhood illness. At just over 18 months old, Eleanor had to endure a life altering surgery and recovery. Her recovery is still ongoing and, through it all, she has displayed such courage and resilience. I can confidently say that I have shed more tears than she has throughout this whole ordeal. Her determination is admirable and still makes me tear up when I watch her. 

We are raising money for the Nationwide Children’s rehabilitation department. We wouldn’t be where we are without their expertise, support, guidance, and encouragement. Please consider making a small donation in celebration of our strong girl. We appreciate you taking the time to read her story, and are grateful for any donation you make on her behalf and any prayers/healing thoughts you send her way. 

With love, 
Kortney, Tyler, Cohen, and Eleanor