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3/8/2017 Latest post:
“Do not fear, for I have redeemed you; I have called you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD your God, the Holy One of Israel, your Savior…" Isaiah 43, selected verses
On Sunday evening, March 5, our three-month-old son Owen began exhibiting some symptoms that led us to contact our pediatrician's on-call nurse. Earlier in the week, Owen had been diagnosed with the flu and we had kept him home from daycare. He was feeling considerably better, but we’d begun to notice some swelling of his fontanel on Thursday. By Sunday we started to see some sluggishness in his eyes, so we made a call to our pediatrician’s on-call nurse. After that consultation, we took Owen to WakeMed Raleigh Children's ER. They ran several tests, concluding with a CT scan. We knew things were not good when two doctors, the charge nurse, another nurse, and the chaplain entered our room. They offered to hold Owen, but we did not want to let our little boy go. The doctors shared the CT scan: it revealed a large mass on Owen’s brain.
We were absolutely devastated. It is impossible to describe the feelings of helplessness that rose up in that moment, attempting to overwhelm us.
But already God was working. He gave us strength for the day, and the night that followed, and the next day. And we’re still standing, thanks to Him.
Owen was transferred that evening to Duke Children's Hospital. The next night, most of the tumor was successfully removed and ten days later, an internal shunt was placed to relieve pressure on Owen's brain. In dialogue with the outstanding specialists at Duke, we were referred to an AT/RT trail study at St. Jude Children's Research Hospital. Owen was accepted into the treatment program and we arrived in Memphis on March 27th. We met with Owen's new Pediatric Oncology team and have been impressed with every single aspect of care at St. Jude's.
New MRI scans revealed that the cancer had spread into Owen's spinal column. Once again, we were devastated and could barely breath. The survival rate for kids with metastatic AT/RT is zero at one year from diagnosis. Zero. No one has ever been cured of this kind of cancer, especially at such a young age. But we are holding on to hope. We believe that Owen could be the first to survive through the healing power of Jesus Christ. Owen began his first chemo treatment on March 31st and after much prayer, we have decided to put our belongings in storage and relocate to Memphis to be together, as a family, until Owen's treatment is finished (approximately 6-8 months).
Understandably, this health crisis for our precious boy has been hugely challenging for us. We've been so fortunate to be the recipients of an outpouring of love and support from our family and friends all over the world. We are so thankful to all of you. We have also received many thoughtful inquiries about how people can help us care for Owen.
Owen has been so strong through all of this, and we both hope to exhibit even a shadow of the strength of our brave boy. We believe that God can and will heal our son. We ask for you to join us in praying for his healing.
We have started a GoFundMe page for Owen as well: www.gofundme.com/owen-steinmann-medical-fund