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G's Journey - written by Grayson's Mom

 

On May 17, 2014 a beautiful baby boy was born. His name is Grayson.

 

It was a warm summer night in late July, and I was giving Grayson (2 months old) a pre-bedtime bath. He was looking around, taking in his surroundings, when I caught a glimpse of something in his right eye. A weird reflection, or glow. I could only see it once or twice depending on where he was looking and where the light hit his eyes, but there was definitely something different about it. So, like any mother of a newborn, I took to Google to find out what I was looking at. A simple search for "reflection in eye" resulted in the most terrifying searches and images. "Cancer" was the first word that I saw. Children with the "white glow" pictured in the search, and pages linking back to support groups and their treatment pages. Naturally, I panicked and called the on call pediatrician right away. The pediatrician on the phone said something to the effect of "without seeing him I don't have anything to tell you, other than, it's probably nothing." Well, I wasn't having any of that. I insisted that someone see him, tonight - and the annoyed pediatrician directed me to the ER. 

 

I called my husband in a panic, and asked him to leave work and come home right away. I didn't explain much, I didn't even know what to say, I just said - we need to take Grayson to the hospital. In a flash, Tyler was home. When we arrived and checked in with our little baby that night, we had no idea what this visit was going to lead to. The on call doctor came in, asked us a few questions and said "Have you ever heard of retinoblastoma?" My heart sank. I replied, "Only what I read about it in the last 5 minutes on Google." He of course wasn't able to diagnose Grayson right then and there - but he referred us to a specialist and insisted we see someone right away.

 

The next few days were a blur. We were directed to on ophthalmologist, who directed us to a pediatric ophthalmologist, who directed us to a retina specialist, who officially, diagnosed our teeny, innocent, little baby boy - with cancer. 

 

 On August 4th, 2014, at just 2 months old, Grayson was diagnosed with bilateral Retinoblastoma. Retinoblastoma, or Rb, is a rare eye cancer diagnosed in early childhood. It can come in one eye, or both. It can grow slowly or quickly, and sometimes, it can even travel outside the eyes and into the brain. Grayson, having the bilateral diagnosis, has the cancer in both eyes. The tumors are classified by size and severity by letters of the alphabet ranging from A to E. Grayson's tumors, were staged at D and E. We needed to begin treatment immediately in order to save not only his eyes and vision, but also his life. Rb can be also hereditary - and Grayson's is. However, after having ourselves and our daughter tested - we all came back negative. Which means, Grayson is the first carrier in the family for the gene, and has a 50% chance of having children of his own with Rb.

 

Upon diagnosis, we were told we quickly needed to see the most world renowned specialist in this type of cancer - she is in Philadelphia. The doctor who diagnosed him said to us "if it were my kid, I wouldn't take him anywhere else." That was enough for us to hear. We were scheduled to take Grayson to Philadelphia within that same week. 

 

We met Dr. Shields at Wills Eye Hospital, who would turn out to be, quite literally, the woman that saves Grayson's life. We also started chemotherapy at Children's Hospital of Philadelphia that very week, with Dr. Leahey. It was a long six months. Flying with a baby is one thing, flying with a baby who is/has undergone chemotherapy - is another. By January, 2015, Grayson had completed his 6 months of chemotherapy treatments. He continues to visit Philadelphia on a regular basis to meet with his doctors, for Exams Under Anesthesia (EUA) and MRI's. To date, he is doing really well. The tumors in both of his eyes are dead, and at our last visit in November, we learned there was no new activity. In February of this year, we return to Philadelphia for another EUA and MRI. We continue to pray that the good news keeps up, and he remains stable. 

 

If you met Grayson today - you would never know he is going through what he is going through. He is strong, happy, healthy, smart and sweet. He is your typical 1 and 1/2 year old boy. He loves to run and play and laugh and scream with his big sister Lyla, he loves to eat (everything!), he loves to give kisses and hugs and snuggle with his dog, Trooper. 

 

He has been put through more than any little baby should ever have to go through. But we are thankful for every day – because he is here, and that is all that matters.

 

To follow Grayson, or “G”, on his journey – please “Like” and follow our Facebook page.

Snowdrop Foundation of WI, Inc.

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Greenville, WI 54942