Hello all! My name is Jordan Nocton. I’m a 23 year old Minnesota native with a love of working with kids and spending time with my family and friends. And this is the story of my dad, Scott Nocton. His battle through medical anomalies and trials, his steadfast strength and hope, and our deep desire to create a better life for him.

My dad’s journey began in late 2007. Father of three beautiful girls, married to his college sweetheart for 17 years and a beloved pastor at Redeemer Lutheran Church, my dad spent his days serving those in need around him and ever-seeking to help wherever he could. On October 29th, he was diagnosed with acute lymphocytic leukemia (ALL). A cancer more commonly found in young children, the doctors worked quickly to begin the fight. My dad endured 5 months of heavy chemotherapy, bone marrow biopsies and radiation, until he was able to receive a bone marrow transplant; his sister Sally serving as a donor match. On March 10th, 2008, the transplant was successfully administered and the leukemia has been in remission ever since.

However, my dad’s medical battle was only just beginning. Quickly after the bone marrow transplant was complete, he began to develop acute Graft vs. Host Disease (GVHD), which eventually became chronic. Though the transplant was a success in terms of cancer remission, the new stem cells received from his sister began to attack different systems of his body. As foreign cells in the body, the new stem cells viewed his entire body as dangerous. This first manifest itself in developing mouth sores and causing distress to the digestive system (nausea, vomiting, diarrhea, etc.)

As the doctors worked to tackle those symptoms, the GVHD continued to wreak havoc. His body became excessively swollen and though he was awake, he suffered confusion and lack of engagement with his surroundings. Throughout the following years, the GVHD caused scleroderma (the hardening of the skin of his body), causing trouble with breathing and general movement. He also developed neuropathy of the legs and feet, causing great sensitivity and chronic pain.

Through treatment of GVHD, my dad was put on a heavy regiment of steroids. The consistent steroid usage has caused glaucoma (damage to the optic nerve with additional eye pressure), cataracts (clouding of the lens of the eyes) and deterioration of the bones (his teeth and hips). Being on steroids for this length of time also left him in a immunocompromised state, meaning that his immune system was extremely weakened and he was highly susceptible to any virus, fungus or illness that came his way. My dad has spent many weeks in the hospital from pneumonia, bronchitis, the flu, migraines, digestive issues, a blood staph infection, and periods of oxygen-dependence (difficulty breathing to the point where he requires machine-administered oxygen); all stemming from his weakened immune system due to the steroids fighting the GVHD.

As the GVHD and scleroderma progressed, my dad began photopheresis, which is the removal of his blood to treat it with medication and light, and return it to his body. The treated blood attempts to help his immune system through regulating his fighter cells and stopping them from attacking the good tissues present in his body. However, in its helpfulness, photopheresis treatments leave my dad physically exhausted.

Even in the midst of his immense suffering in his medical battle, my dad’s heart was always for enjoying life and helping others. He started The Well Christian Fellowship, a church for the fishermen and sailors at Shores of Leech Lake Yacht Club to attend on the summer weekends. He continued to attend the senior Bible Study at Redeemer and served his friends there diligently. He officiated many weddings and funerals, offering hope in the times of joy and times of sorrow. He attended family reunions and enjoyed family trips when he was able; family is one of the most important things to him. Even in the hospital, he befriended his nurses, doctors, drivers and all who came in contact with him, even extending the invite for them to attend our family Thanksgiving if they had no place to go. His immense suffering never amounted to much in his own mind compared to the hurt of others and he strove to comfort and help those around him and show them hope.

In early May 2016, my dad was admitted into the hospital once again, suffering this time from shingles. While in the hospital with shingles, he also developed pneumonia, so he was transferred to the ICU for additional care. Things seemed to be recovering and he was nearing discharge to come home on May 10 when he experienced immense pain in his abdomen through internal bleeding. As they looked into the bleed, they noticed other anomalies, leading them to diagnose him with posterior reversible encephalopathy syndrome (PRES). PRES is caused through the leaking of fluids from damaged brain vessels, causing irritation of the brain. On May 12, he slipped into a coma.

The doctors had no idea what prompted him to slip away like that. He was unresponsive, unconscious, he had spiking fevers and no external awareness whatsoever. They administered lumbar punctures, MRI’s, EEG’s and a variety of other tests to try and find answers. Out of concern for his weakened breathing and fear for the damage a breathing tube would cause on his vocal chords and throat after two and a half weeks, he was given a tracheotomy. He was also given a feeding tube for nutrients.

With several weeks of little to no responsiveness, we started to prepare for the worst. The doctors held a family conference in late May to provide all the information that they had and answer any of our questions. They felt that time was the best thing we could give him if we hoped for him to wake up. On June 3, the doctors started a high dose of steroids to see if that would improve his condition. After several days on the steroids, he began to open his eyes and show signs of responsiveness. On June 19, for the first time in over a month, our family was all together and, with the help of a speaking valve, talking together; the best Father’s Day I could have ever hoped for.

After several weeks of improved consciousness, he was transferred to a rehab hospital to wean him off the trach and feeding tubes and strengthen his muscles through physical therapy. As rehab progressed, it became very obvious that severe damage had been done to his left leg during the coma. He is unable to feel or move it. In addition, both of his hips have osteonecrosis (reduced blood flow to the heads of his femurs, causing the bones to break down and become immensely painful). As a result of this, he became wheelchair bound and struggled to even work through his physical therapy due to the pain. But finally, on August 17, he was able to come home.

The goal of this GoFundMe is to raise the money needed to remodel our home as soon as possible to make it wheelchair and handicap accessible for my dad. We had just moved out of our split level home on July 18 to a rambler due to my dad’s limited mobility. However, now that he is in a wheelchair, this house too has many limitations for him. Constructed in the 60s, the narrow hallways and doorways are too small for a wheelchair and confine my dad to our dining room and kitchen only. We have had to create a makeshift room for him by placing a mattress, commode and small privacy wall in our dining room to provide him with a space of his own. He is unable to exit or enter the house due to the stairs at all entrances and no ramps. He cannot even let our four dogs outside during the day, because the sliding glass door to the outside resides in our family room, which is merely a step lower than the main level of our house, but impossible for a wheelchair to maneuver over. As he spends his days alone while our family is at work and school, he is left helpless and unable to even work on general household chores and items.

The desire is to remodel our home to be accessible to my dad, who now resides in a wheelchair. As a man who has spent his life serving and helping others, it is heartbreaking to see him struggle to even open the fridge or turn on the sink in our narrow kitchen. A house remodel would allow my dad access to the entirety of the upper floor of our home, ramps for him to enter and exit the house, the ability to enter and use a handicap-friendly bathroom, kitchen and family room, and sleep in his own bed in his own bedroom. Home remodels are incredibly expensive, but my dad is so worth it. Being able to move about our house and even outside freely would restore hope to my dad’s heart, give him back some control and remind him that this fight isn’t over. We’ll never stop fighting.

Thank you for reading our story and for hearing my heart for my dad. I desire so greatly to restore hope to the man who raised me to believe I could do anything I put my mind to and live a great life. Help me let my dad do the same. Blessings to you all.