CureSearch Walk Forever Heroes – Knox

Knox Thomas was born on September 10, 2011. Around the time Knox was 6 months old, I started getting concerned that something was wrong with him because he would not sit up. But he was pulling himself up and doing everything else an almost 7 month old baby should be doing. I remember saying something to my mom about my concern at Easter and we both agreed that babies just develop at different paces.

But on Thursday, April 12, 2012, I was changing Knox’s diaper like any other morning when I found “it.” I noticed what looked like a bruise on Knox’s little bottom and I immediately thought, “Wow, that’s a weird place for a bruise.” So after a little investigation and feeling around, I felt a 3-4 cm bump on his bottom. I remember thinking that maybe he was just constipated or something really simple like that. But I did feel the need to be seen by the pediatrician right away.

That morning had started off so chaotic and crazy that getting out to go to the pediatrician’s office seemed like a much-needed break from our house. I could tell as the pediatrician checked on Knox’s bottom that she too was concerned. We had an ultrasound to check things out and that was the first time that the thought of something major went through my mind. The tech was labeling her pictures mass and I could see that there was blood flow. At that moment I knew that there was something growing in our precious baby boy’s body.

The ultrasound results were pretty inconclusive and the radiologist recommended further testing. On Friday, April 13, 2012, is when we heard the words, rhabdomyosarcoma in the same sentence as Knox. The MRI revealed a 4-5 cm tumor in his bottom near his prostate, bowel, and bladder.

We were of course devastated but we had no idea what this was going to mean for our lives going forward. Knox had another week of tests and procedures and was ultimately diagnosed with stage 2 alveolar rhabdomyosarcoma, a very rare and aggressive form of childhood cancer.

Before we even started chemo we were told that we needed to start planning on traveling either to Houston or Boston for radiation treatment. So not only were we trying to figure out life with three kids, chemo, and immunosuppression we were also trying to get accepted into very busy proton radiation centers to fight for our baby’s life. The long and short of it, Knox did chemo here in Omaha until July when we took him to Houston for two months for radiation therapy.

We came home from Houston on September 7 just a few days before his first birthday and the doctors in Houston sent us home very optimistic about Knox’s prognosis. Unfortunately on September 12th, I found another lump. And about 10 days later my worst fear was confirmed, Knox’s cancer had spread. He now had spots in his lungs, liver, and lymph nodes. We tried a different treatment plan but despite all of our aggressive efforts, Knox took his last breath in my arms, at home on October 29, 2012.

Knox was 13 months old when he earned his wings. Isabelle had just turned 7 in September and was in first grade. Aleks was only 4 and in preschool. They both absolutely adored their baby brother from the moment they met him the day he was born. We have all had our ups and downs together trying to figure out our new normal after saying goodbye to Knox.

Jax and Eliza are our little gifts from Heaven. They are our rainbow babies. They were born on March 10, 2014, Knox’s half birthday. And they have been exactly what we needed. They have brought so much joy and love to our lives. And keep us focused on our blessings in our lives. Izzy and Aleks make sure to talk to the babies about Knox all of the time. And we all find it very comforting to know that they met Knox in Heaven before joining our family.

Alexa Lewis


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