Noah's Story

Noah Ohrt is our hero, Noah was 15 years old, a Freshman in high school when Noah was diagnosed with Ewing's Sarcoma. Ewing's is a very aggressive primary form of bone cancer and can be located in the bone or soft tissue around the bone. By the time it is discovered, it most likely has spread.

Noah began having severe pain in his lower back and left leg. Noah had a high tolerance for pain and you knew something was not right if he was hurting. After numerous Dr. appointments, x-rays, nothing was found. The doctor told us it was likely a strained or pulled muscle from playing sports. Noah was given Naproxen and a muscle relaxant for the pain. The pain was coming and going. We requested a 2nd opinion. We were scheduled for an MRI, but would have to wait another two weeks out. Noah called me one day from school, the pain was so bad, worse than when he broke his collarbone from a dirt bike accident. The weekend before, Noah had a spill on his snowmobile. We were thinking perhaps he injured something from that day. I called the doctor and wanted something done immediately, they ordered an abdominal/pelvic CT scan. They told us after to go home and they would be in touch with results. Before we even got  home, the doctor was calling and asking that we come back, something was found on the scan they didn't like. I told Noah and tried my best to remain calm and reassure him that it was most likely an injured muscle or it was a fracture. We got to the doctors office and Noah had the MRI, they bumped to that afternoon. I called Noah's Dad to come meet us at the doctor. We were called into the doctors office. The doctor was extremely upset. He showed us the scans, as we looked on the screen, our hearts sank. Nothing prepared us for what we were to see or be told. Noah asked, "Is it cancer?", as the doctor was showing us the white spots, a left pelvic bone mass, spots in Noah's lungs, and on his right hip. The doctor explained Noah would need to have a biopsy. We were in shock, disbelief, and sick to our stomach, numb. How could this be happening? Why? Noah is a healthy teenager, this can't be happening. 

Noah had the biopsy. They told us this was a possible Germ Cell cancer, and where do we want to go to be treated? We chose the University of Iowa Children's Hospital in Iowa City, now the Stead Family Children's Hospital. 

After exhausting every possible test and biopsy, scans, blood tests, it was confirmed-- Noah had Ewing Sarcoma cancer.  Our world turned upside down and would never, ever be the same again. The Doctors followed the world wide standard protocol for treating Ewing's Sarcoma.  Noah endured two years of chemotherapy, radiations, had a port placement two times, port flushes, labs, and more labs that had to be done on a regular basis to check Noah's blood counts, hemoglobin, platelet transfusions, scans, heart function tests, hospitalizations, lung tube, platelet booster injections, Autogous Peripheral blood transplant (which meant a month long stay in isolation followed by high dose chemotherapy,) and anytime Noah had a fever he would automatically be admitted to the hospital for 5-7 days, because of the risk of possible infections. 

All of the toxic treatments that Noah had came with side effects: weak immune system, mouth ulcers, nausea, vomiting, hair loss, dehydration, pain, esophagitis, skin changes, diarrhea, constipation, lack of appetite, fatigue, shortness of breath, difficulty swallowing, cough, weight loss, weight gain, and the risk of long term side effects, and possible secondary cancers and damage to organs.

Noah was given medications to help with some of the side effects which in turn the medications themselves, came with risks and side effects.

Sometimes the scans would show some improvement, but most of the time it was not good news. 

After being told the U of I had done all that they could, we sought out a doctor who was a Sarcoma specialist in Texas. He saw Noah and gave the U of I doctors a treatment plan to follow. After the scans it showed the treatment plan was not working. We went to the University of Minnesota to discuss a possible clinical trial and to see if it would help Noah; it did not sound promising at all. We researched from the beginning of Noah's diagnosis, clinical trials, treatments, around the country. Noah did not qualify for them, or they didn't offer any hope. No cure for metastasized Ewing's Sarcoma. How can there not be something to cure this horrible disease? Noah is our precious child, please let there be something to help him. We prayed and prayed for a cure. 

Noah loved life and nature. Noah loved fishing, dirt-biking, kayaking, swimming, mowing yard, bowling and helping his Dad on our farm. In the winter, Noah and his buddies would go snowmobiling, he loved it. Noah loved playing his x-box and playstation. His two favorite pets, Mr. Cat and Maddie. Noah also loved sports, especially football. Noah played for the Gladbrook-Reinbeck Rebels football team. Noah also played baseball and basketball in his earlier school years. Noah was the member of the Youth Bowling League and a member of the Gladbrook Gals and Guys 4-H club. The club had a special bench made in his honor that is on display at the Tama County Fair.

Noah loved spending time with his girlfriend, Kyleah. Kyleah and Noah started dating a little before he was diagnosed. Kyleah gave Noah a reason to smile and stay positive through his fight with cancer. The love between them was beautiful. Kyleah organized many fundraisers for Noah and our family. Also fundraising help was received from many friends, schools, communities. 

Noah loved hanging out with his friends. One of his favorite things to do was to have his friends over for a campfire. 

Noah was robbed of his high school years, when he should have been hanging out with his friends, playing sports, or having fun-- he was fighting for his life. Noah would go watch his girlfriend, Kyleah, play sports and he would go to watch his football teammates and cheer them on. Noah's high school arranged for a tutor to come to our home and help Noah with schoolwork. Noah and his tutor, Ellen, got along famously. We are so thankful she was the one who came to help Noah. The high school also arranged for Noah and Kyleah to attend the Junior & Senior prom, Spring of 2013. Noah and Kyleah got to experience the right of passage, and attend prom. It was a wonderful Blessed day!

The following fall after Noah had become an Angel, Noah's football team had PFN (Play for Noah) on their helmets and a special bell was made In Noah's honor that the players would ring as they would run to the field or after winning a game. Noah's team went on to State football playoffs. Noah was their inspiration to win those games, they were playing for their beloved teammate, Noah. Kyleah's soccer team wore yellow and the teams always had a yellow ribbon painted on the soccer & football fields. Yellow represented Ewing's Sarcoma in honor of Noah.  There is a bench at the Gladbrook-Reinbeck high school in Noah's Honor and a Black Maple Tree planted in Noah's Honor.

Noah is our hero and an inspiration to everyone that knew him. Noah had a special gift, his huge love and strong determination. Noah was brave, courageous and strong. Noah had an incredible fighting spirit to never, ever give up and he lived each day to the fullest. Noah never complained and had this incredible sense of humor. Noah was compassionate and helping others when he could. Noah was a very special young man. Those blue eyes, blonde hair, handsome grin and infectious laughter. 

Noah always loved life and cancer was not going to slow him down, until he couldn't. After battling Ewing Sarcoma for two years, Noah became an Angel at age 17 on March 8th, 2014. There are no words to describe the heartache and pain missing Noah. But Noah showed us when you die, it does not mean you lose to cancer. Noah beat cancer by his actions, his words of wisdom, in which he gained as he grew up so fast and so young. As parents, we all want to see our children grow and do good things, succeed in life. Noah made an impact on all our lives. 

Always remembered, never forgotten. One of Noah's favorite sayings was, "At this Juncture," ATJ.

Our lives will never be the same, our hearts broken. 

We love you Noah, we miss you always.

Forever young. 

It is our hope to raise awareness to families, medical community, and the world about Ewing's Sarcoma. To support families, research, specialized Ewing's sarcoma treatments, less toxic options for patients, new drugs approved for children and teens, and ultimately, a cure. 

With love, 

Noah's family, Mom (Kathy) and Dad (Ed), Sister Kayla (Eric) Berkson, Brother Zach (Brittany) and niece Maleaha. And Noah's family and friends.