Honored Kid

Colton Steinhorst

Colton Steinhorst Kid Photo


Green Bay, WI, US



Date of Diagnosis

August 2011



Treated At

Children's Hospital Colorado American Family Children's Hospital

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My Story

Colton is a fun loving 3 year old boy who is full of life. Colton loves to play all kinds of sports, and loves to watch the packers play on Sunday's. He also loves to build legos with dad and race trucks on the kitchen floor with papa. He also loves to throw rocks into big lake superior with grandma. Colton loves to be around all of his friends and family and is always the life of the party!! Background Story Colton, was a very healthy 2 1/2 year old little boy, On Thursday August 11th, we noticed Colton and his brother Camden not feeling well. They both had flu like symptoms and just wanted to rest. As the next few days went on Camden seemed to be doing better and getting fluids but Colton wanted nothing to do with them. We would try to push the popsicles and juice but it usually would just come back up. I got home from work Sunday night and Colton still didn't feel good so I told Jeff that I would take him in the next morning as we both thought he was super dehydrated. We went to Children's Memorial Hospital on Monday August 15th for fluids. We had an x-ray done that came back fine and then Colton drank some Apple juice. They were gonna send us home after the Apple juice if he could hold it down but I knew something was wrong. After about 15 minutes of waiting I told our nurse that he threw up the Apple juice ( which he really didn't but mommy wanted fluids and answers) so they decided to run some labs. After about waiting an hour the Dr. came back in to tell us he was gonna give Colton some more fluids and check labs again because they came back abnormally high. I said ok and didn't think anything of it. The checked the labs again and he then came back and told us Colton would be staying overnight to receive fluids and they were gonna check labs a third time because they were still high. After about another hour the Dr. came back again to let me know that Colton was going to be flown by helicopter to Children's Hospital in Aurora Colorado because his lab values were showing he was in Kidney failure (Creatinine and Potassium). So I called Jeff and he rushed home from work where we got Colton all set to go on an adventure on the Helicopter, he was so brave! We saw Colton off and rushed around getting stuff to go up there, we made it up here to meet the doctors who had just put in a central line for Dialysis. Colton received one round of dialysis and then was brought down that night for a CT scan. then we would have to wait till morning for results. As the PICU doctors made rounds they came and updated us on Colton's prognosis, he had 2 large masses in his belly and a bunch of small ones and he would have to go into surgery that day to get stents put into his ureters (kidneys) to try to regain kidney function. While they were in surgery to get a biopsy of the mass they placed a port in his chest to deliver chemotherapy for the cancer that he has at this time unknown. Colton came out of surgery a champ and the stents in his kidneys were successful so now we just had to watch to see if they worked. Over the next few days we watched his lab levels to see if he gained his kidney function back. Within a week his kidney's were back to 100% function and they were able to remove his central line. Now the attention turned to the cancer. We were informed that Colton had Neuroblastoma, a cancer that comes from immature nerve cells. The doctors informed us that the cancer had probably only been growing for 3 months. It was hard to imagine that something could grow so fast. Worse yet we were informed that it was stage 4 and although there didn't appear to be any bone involvement, there were cancer cells in the bone marrow biopsy's they had taken. We met with a ton of specialists in the first 2 weeks and soon we had an entire course of treatment laid out in front of us. If all went according to plan it would be a year of treatments. We started chemotherapy in an effort to shrink the tumor enough that we could remove it. Updates 12/29/2011 We've now been through 5 rounds of chemotherapy, countless lab tests, and more blood and platelet transfusions than we would have ever imagined. The tumor had shrunk enough that the doctors felt it was time to go in and try to remove as much as they could. Two days ago we had the surgery, and we're happy to say that after 7 hours in the operating room, the surgeon informed us that she felt around 97% of the tumor was able to be removed. There were a few places where she wasn't able to get to it or it wasn't worth the risk to try and get. Pathology was done with the removed tumor and only 5% to 10% was left living, which not only meant the chemo had worked but also that the little bit that was left behind was likely already dead. This was a huge hurdle and incredibly encouraging but we still have a long way to go. Colton still faces another round of chemotherapy, a stem cell transplant, radiation, and immunotherapy. We would like to thank all the great friends and family who have given us support and continue to be there, we truly would have been lost without you. Colton Relapsed after being disease free for 3 months in October 2012, originally we found spots on his left leg and spine. We went on out Make A Wish trip November 2012 then came home to try to beat this disease. Colton underwent 3 more rounds of chemotherapy and we were presented with a Hyplo identical transplant as an experiment. On April 10 th 2013 I was a stem cell donor for Colton. Everything was going well for the first 4 days and then he developed complications. Colton was flighted to Denver Colorado due to the complication with his liver again. We spent 3 months out in Colorado and he then developed a rare side effect call GVHD, we finally made it home to Wisconsin in July. August came and the doctors gave us news that our transplant wasn't working and Colton's cancer was progressing. They told us we had 4-6 months. We made a bucket list. We filled 2 weeks full of fun activities and started planning to go to Disney again. We went out to our friends cabin over Labor Day brought Colton to the local hospital the following day for a blood transfusion. I brought him home that night. We realized that things were going faster the we ever imagined. Colton passed away the following day at home surrounded by friends and family. We live on in his memory with his foundation. www.coltonscure.org. We provide families in Wisconsin with a child with cancer financial grants to help them

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