My Doernbecher Story
On Wednesday Oct 14, 2009 my friend Tami noticed that she could see in to Austin's eye. She was looking at him from an angle with the sun shining on his face. His eye was also dilated. I called the pediatric ophthalmologist and they scheduled an appointment for Monday.
By Friday morning mama's instincts kicked in. I called Austin's Pediatric Doctor and of course they referred me back to the ophthalmologist. I called them again, and again they said Monday.
On Saturday, Austin had a severe headache. Sunday morning on the way to church I called my dad – he told me to call them now. I called again – this time stressing the importance of Austin's symptoms. He was able to see us right after church. He indicated that Austin's retina was detached and that a few things could cause this. He referred us to Casey Eye Institute. Monday morning we were seen by Dr. Stout for an ultrasound on the eye. He indicated it was either Retinoblastoma or Coates Disease.
It felt like we were being choked. That life was slowly being stolen from us.
He asked us to come back the next morning for an Exam Under Anesthesia. The exam indicated Retinoblastoma. This time he asked us to come back for an MRI. So for the third day in a row we drove to Casey Eye for the MRI. The MRI provides clearer details of the tumor. It indicated a fairly large tumor that had detached his retina and had vitreous seeding. We had little hope of saving his eyesight and due to the size of the tumor the choice was made to remove his eye.
His right eye was removed October 29, 2009. It tore at our hearts. How do you tell your child that his eye is going to be taken out? It still creates an ache in my heart. The flip side is, he slowly adjusted to going blind so to remove it, he only had to become accustomed to a prosthetic eye.
A week later we took Austin to see Dr., Steele to check how his eye was healing. We received the good news that his eye was healing beautifully, but then more bad news came. During the pathology exam on Austin's eye they found vitreous seeds in the Choroid and Optic Nerve of his Eye, a stage 5 cancer. They felt confident they had cut around the portion in the optic nerve but not the choroid. It had extended 3mm into the choroid. I was desperately trying to hold it together. Had we not made the choice to remove his eye, the outcome could have been vastly different. I had suggested to Rolf to stay at work as we just thought it was a routine follow-up. Thank goodness my parents had decided to come. I did not want to break down in front of Austin.
After reviewing Austin's situation with Dr. Stout, he referred us to Dr. Melonpati, a pediatric cancer specialist. It was then decided that Austin would need 6 months of chemotherapy. We had a port placed in Austin in December and he began treatment right away. During this time they had given Austin a conformer or a temporary eye until he could be fitted for his own. In January his eye had healed enough to have his own eye made. It was an amazing process but again very heart breaking. Austin struggles with the prosthetic coming in and out. The conformer had popped out twice as it was not fitted for his eye specifically. His new eye has only popped out once and he is getting braver! I think one day we will laugh when this happens – for now it is a challenge.
Also in January Austin had blood drawn for a genetic test. Retinoblastoma is either sporadic or hereditary. We felt fairly confident it was sporadic, but the wait was long and felt like constant pressure. The test results finally came back late March indicating that Austin's cancer is Unilateral Sporadic Retinoblastoma. Unilateral meaning one eye, sporadic means not genetic.
Austin just completed his 6th treatment of chemotherapy. We are thankful he is adjusting and we know that he has MRI's, Eye Exams, Blood draws etc., but he has been given a gift of life and we will do our best to teach him to give back to others who have been through similar experiences as well as educate those who have not. We are grateful to those for continued prayers and for supporting other children with Retinoblastoma! On November 2, 2012 we went to Austin's Survivorship apt., at Doernbecher. We are three years out and all continues to be well. We continue to be grateful to all that have helped us along this journey!