I still remember everything about that moment. The doctor came into our hospital room and said, “Your child has cancer. He needs treatment. There is a sense of urgency here.” I will never forget those words. To this day, I get chills and start crying when I think about it. I remember how my husband looked beyond tired and cried out but couldn’t hold back the tears. Our son, Kohlton, was peacefully sleeping right next to us. I looked at him and thought, “this precious boy can’t have cancer. Not him. Not my child.”
What started as a suspicious bump on my two-year-old’s forehead had moved and developed to the point that his left eye had swollen shut. Our pediatrician had been monitoring it closely, and while he was reassuring me that everything was probably going to be ok, he wanted to look into a few additional possibilities. He told me to go home and that he would call me as soon as he knew something.
Within an hour of leaving the doctor’s office, the phone call came asking me to come back to the office to pick up admission papers. We were to go straight to Studer Family Children’s Hospital at Ascension Sacred Heart, where Kohlton would be admitted, and a doctor would be waiting for us. When I arrived to pick up the paperwork, our pediatrician handed me the heavy, sealed envelope and then gave me a hug and told me the doctors at Studer Children’s would take great care of Kohlton. He was so sweet it scared me.
My friend drove to the hospital with us to be with me until my husband arrived. On the way there, I asked her to open the envelope because I had to know what it said. She read every word to me, but all I could hear were the words, “suspected sarcoma.” I didn’t know what that meant, but I knew it wasn’t good. She and I both tried to hold back our tears, but we couldn’t. We both knew it was going to get even scarier.
From the moment we walked into the hospital that day, it was a whirlwind. Kohlton was immediately given an IV, and we were introduced to an oncologist.
I think I stopped breathing for a bit when I heard “oncology”. I knew what that meant.
The doctor went straight to Kohlton to examine him from head to toe. I was in complete shock, watching my son scream while he was poked and prodded. I just wanted to grab my sweet baby and tell everyone to back off.
That night when we finally had a moment of quiet, my husband and I googled “sarcoma”. We didn’t sleep at all afterward. All we could do was pray and cry. Not my child! Children don’t get cancer! I mean I’ve seen the St. Jude’s commercials but seriously, what child actually gets cancer? It was so very hard for me to wrap my head around this new reality.
Kohlton remained in the hospital for the next nine days. During that time, he had a medi-port inserted, he had a tumor removed and biopsied, an MRI, several full body X-Rays, a full body nuclear bone scan, a bone marrow biopsy, several pokes, countless blood tests, and his very first chemotherapy.
It was hard to believe how quickly our lives had changed in such a short time.
I thought the day we received Kohlton’s cancer diagnosis was going to be the roughest day of all of our lives. I was wrong. Eighteen months later, Kohlton relapsed. This time his cancer was on the pituitary gland, which led to the loss of his growth hormone. He has been getting a shot every day since he was four years old to help him grow.
I wish I could tell you that was the last time Kohlton relapsed. Unfortunately, Kohlton has relapsed six times since he was first diagnosed in early 2012. He has done seven, year-long chemotherapy protocols, each one more intense than the last. Kohlton has endured more than any child should have to, but he is the strongest boy I know.
I don’t understand why this happened, but I do know that it is not my fault.
If your child has cancer, it’s not your fault either. This didn’t happen because we fed them hot dogs and Cheetos. It isn’t because we chose formula over breast milk. None of this is our fault.
The hard, honest-to-goodness truth is that children get cancer. It’s an awful reality, but it’s true.
If it wasn’t Kohlton, it would be someone else’s child. So, why not my child?

For updates on Kohlton, follow Super Kohlton, Fighting LCH on Facebook.
There is no more sweeter, precious child then your precious kohlton. Please give him a big hug from Ms Patti at Berryhill.
I am amazed and humbled by the goodness and strength of this entire family. They are always in my thoughts and prayers.
Helen
What an inspirational child! He is so courageous. Prayers for continued healing and good health ♥️
Without a doubt, definitely one of the strongest guys I’ve ever met.