Our St Jude story began in Conway, AR.
Katie had just started crawling and would get stuck on the left side. She would crawl into a chair leg, cry, then do it again. When we played peekabo she would panic if we covered her right eye and not respond if we covered her left. She also developed a nursing preference. During the day she only liked nursing on the right and at night on the left.
We took her in to the doctor for her shots at 6 months, expressed our concerns, and were told by the nurse that the doctor would do an eye exam at 9 months. We were not satisfied. My husband got a hold of the local eye doctor who fit us in right away after hearing our concerns.
He asked us a number of questions trying to find a reason why her retina had detached. Had we dropped her? Had she ever rolled off the bed? The office was closed, we were the only ones there. The nurses kept coming up to us admiring our baby but with a far away sad look in their eyes. It should have been a clue. We left grieving that she was blind in one eye, no idea what really lay ahead. We were sent the following day to a Retina Specialist in Little Rock.
After examining her twice he sat us down and explained that he had recently attended a seminar conducted by Dr. Mathew Wilson on Retinoblastoma. Until today he had never seen a case. It was his desire to send us to St. Jude where Dr. Wilson practiced. In fact his nurse was on the phone as we were speaking making all of the necessary arrangements. He was not comfortable giving us a diagnosis but he knew that we would be in the best possible hands to diagnose and treat, if in fact it was Retinoblastoma.
I believe my brain stopped functioning at this point. Perhaps it was shock.
As we numbly walked to our vehicle, trying to be the optimist, I blurted out “well it could have been worse, it could have been cancer.” My husband in his kindness simply responded “sit down, we need to talk.”
Retinoblastoma (RB) is a rare cancer accounting for 3% of all childhood cancers. Retinoblastoma is usually diagnosed before a child reaches the age of 3. For more information please visit www.StJude.org It is many times detected first through photographs that display what is called a “cat’s eye”.
That was a Friday. The next few days were a blur as arrangements were made for our son, friends were told, employers were notified, and we packed. Monday we arrived at St. Jude. I don’t remember much about the first week. I remember I was always cold, strangers offered me kind words, big medical words were said that made no sense, and a good amount of ice cream was consumed.
I will never forget being told it was RB and what our options were.
Dr. Galindo and Dr. Wilson took us into a room lined floor to ceiling with toys. We sat and discussed options. I did not understand anything they said except the words Chemo, Radiation, Enucleation. I had thought up to this point that Enucleation was the last resort but here we were discussing it as if it was in fact the best route. In the end it is what we chose. The tumor in her eye had created enough damage that even if the eye was saved the chance of her being able to see from it was slight.
My parents made the trip to Memphis so that our son could join us and so that they could be there for us.
The day of her surgery came. April 2, 2007. (read more here: Will God hold on to us if we let go of Him?)