Benedict Hornek and his family were nominated to receive help from the Dainty Warrior Project in August 2015. They decided assistance with housekeeping would benefit their family as he continued his cancer treatment. We are honored to have been able to gift them with regular housekeeping sessions. Please read his story:
"Benedict James Horinek was born on July 21, 2014. He has been a resilient little boy from the moment he entered into the world. In Benedict's short year of life, we have journeyed down many different health avenues trying to help him to be comfortable, out of pain, and thriving as a vibrant little boy. Since his early arrival in July at 36 weeks gestation, Benedict has battled with Hypotonia (low muscle tone throughout his body) which has caused multiple milestone delays of lack of head control, not able to sit up, and no weight bearing capabilities. In conjunction with this, Benedict has tolerated continual pain in his digestive track as well as many allergic responses to formula ingredients and sedation medications. This sweet innocent has truly endured so much and while doing so has brought immeasurable joy to those around him, especially his five siblings!
On March 31st, Benedict had an MRI to observe if his low muscle tone and delays had been caused by a brain trauma in utero or at birth. He was symptomatic for a diagnosis of cerebral palsy. However, what the findings showed was that Benedict's brain had a low content of white matter and a very thin corpus callosum which connects the left and right cerebral hemispheres and facilitates communication between both sides of the brain. This was thought to be some kind of "genetic abnormality", but only time and more research would help us to know what progresses in development Benedict was headed toward.
On Monday, April 13, we had scheduled Benedict an appointment with Doctor Linda Lawrence an Ophthalmologist in Salina, Kansas. She had come so highly recommended by everyone we spoke with but because of her quality of care it took some time to get an appointment. Benedict's wonderful primary physician , physical therapist, and occupational therapist, all recommended he get his eyes checked because he had a defined lazy eye. We were not very concerned because two of his sisters also struggled with lazy eyes at an early age and were corrected with eyewear. We waiting for close to 3 months for our appointment, anticipating to come home with an infant in glasses or a patch just like his sisters.
Much different from our anticipation, Dr. Lawrence found a tumor located on the front of the left retina. Very confidently she was able to confirm that Benedict had what is called Retinoblastoma. Retinoblastoma is a rare type of eye cancer that usually develops in early childhood, typically before the age of 5. This form of cancer develops in the retina, which is the specialized light-sensitive tissue at the back of the eye that detects light and color. Dr. Lawrence was then able to confirm the location of the tumor on his previous MRI. Immediately and compassionately she encouraged that we quickly go to the best of the best. Dr. Carol Shields, is an ocular oncologist in Philadelphia and this is her specialty. I wondered immediately if all of Benedict's others symptoms could be related or caused by this cancer.
On April 21st, Dr. Carol Shields confirmed Retinoblastoma in the left eye as well as a suspicion of a genetic abnormality of 13q Deletion Syndrome. The tumor was contained and through a very thorough eye exam it was determined that the best course of treatment for Benedict was IAC. IAC or Intra-arterial chemotherapy is a newer approach being used instead of systemic chemotherapy which injects chemo directly into the ophthalmic artery, the main artery that supplies blood to the eye. In this technique, a very thin catheter is inserted into a large artery on the inner thigh and slowly threaded through the blood vessels all the way up into the ophthalmic artery. The chemo is then infused into the artery to directly attack the tumor. Benedict's first treatment procedure on April 24th was a successful procedure. Four weeks later, Dr. Shields confirmed that the 1st treatment had decreased the size of the tumor by 99% and all that was necessary was one more IAC.
On May 20th, Benedict had an unsuccessful treatment attempt. Unfortunately, after many attempts the surgeon was unable to get through the artery in his leg. It was decided because of Benedict's fragile body and healing that needed to happen in his legs we would wait 9 weeks and return to see if chemo was still necessary.
On Monday, July 21st, Benedict's 1st Birthday, we were handed a very unexpected prognosis. The cancer in his eye had seeded out. The remnants of the tumor had spread to other locations in the eye. At that appointment it was confirmed enucleation (eye removal) was the best option to save his life. On Tuesday, Benedict had all his genetic blood work drawn and on Wednesday, July 23rd at Jefferson Hospital of Neuroscience his surgery was performed. The surgery went as well as can be expected. Currently, Benedict is 10 days post-op and we are awaiting results from the pathology report to determine if Benedict will need continued systemic chemotherapy.
Clint and I would never have chosen this journey or these hardships for our son but from the moment he was diagnosed we knew Benedict's journey was dependent upon our faithful Yes to the Lord. Benedict has brought so much joy in the midst of his sufferings. God's hand has been weaved so miraculously throughout his life even up to the exact point of the cancer finding. I am so grateful that God has allowed us to recognize those moments where he has been so deliberate in His organization of timing and discoveries. He has taught us patience, perseverance, discerning what's important in life, and the true bliss that siblings can bring to one another. So we pray that we can continue to be grateful to join Benedict in his journey. We ask that you too can be grateful to be part of Benedict's journey and can respond with your yes to prayerfully pray with us as we embrace whatever comes next."
- The Horinek Family