For the past, gosh, since the very start of my photography career, I have had the honor of photographing the Erbes children and family. Starting with 'Shy Landon' as one of my toughest sells at just 3 years old. Then little Lillian came into the world and I documented her whole first year, and each year since. I love her spunk and sass! Then finally, Mr. Grayson. Those blue eyes of his totally melt me. Grayson has had quite the battle the past year and a half, and I wanted to bring awareness to his fight. Please read Grayson's story written by his superhero mom, Sara, and see resource/info links and where you can donate at the bottom. <3
Where We Have Been…
In early March of 2016, at just 10 months old, we noticed that Grayson’s eyes started moving back and forth in a chaotic rapid manner. We made a trip to our pediatrician’s office looking for answers. She referred us to an ophthalmologist for further evaluation. The ophthalmologist performed an eye exam on Grayson and even witnessed the eye movements, which had increased in frequency since we first noticed them. The doctor ruled out a couple different things and confirmed that there were no tumors behind his eyes. We were more than relieved that there was no cancer, but we left ophthalmologist’s office without a diagnosis.
Over the next couple weeks, Grayson’s condition declined. His eye movements were increasing in frequency, he wasn’t eating much, he wasn’t sleeping much, he was fussy and wanted to be held all the time. We needed answers and needed them ASAP.
On Sunday March 20th, 2016 we headed to the University of Iowa’s ER department. After a short ER visit we were admitted, but still didn’t know what was wrong with our baby. The doctors told us they would feel better if they could do some tests to see what could be causing Grayson’s eye movements.
The next day brought us an introduction to our neurologist. After many tests and consulting with other doctors, on Tuesday March 22nd, she diagnosed Grayson with Opsoclonus-Myoclonus-Ataxia Syndrome aka OMAS. OMAS is a rare neurological disorder that affects 1 in a million individuals worldwide. The immune system of someone who has OMAS views the brain as a foreign body and therefore attacks it, often times resulting in brain damage. The eye movements we had been seeing, were visible signs of Grayson’s immune system attacking his brain. Grayson eventually lost the ability to cruise around furniture, because he could no longer pull himself up. Crawling became difficult; he couldn’t crawl without falling over. He lost his verbal abilities and communicated with us by smiling. It was heartbreaking to watch our son lose his milestones that he had achieved. There is no cure for OMAS.
50% of OMAS cases are a result of Neuroblastoma, which is a form of pediatric cancer. Since the possibility of cancer was a concern, our neurologist referred us to the pediatric oncology department at the University of Iowa. Our oncologist explained that a small percentage (2-3%) of Neuroblastoma tumors can cause OMAS; so she scheduled Grayson for a CT scan to see if he had a mass somewhere in his tiny body.
On Thursday March 24th, 2016 Grayson had his CT scan and we were given the results that afternoon. Our oncologist, as well as a pediatric surgeon, met with us to give us the details of the scan. Mostly all we heard them say was “blah, blah, blah,” but the one thing we managed to hear was “a mass was found.” Heartbreak, fear, anger, and confusion… emotions that I didn’t know I could feel all at the same time.
Within a 48 hour time frame, we had been told that our son had a rare neurological disease, that didn’t have a cure, and on top of that he had cancer.
Where We Are Now…
Grayson is now a very active 2 year old. We are 15 months into Grayson’s journey against OMAS and Neuroblastoma. He’s had surgery to remove 95% of the tumor that was wrapping itself around his spine, a port was placed to administer his infusions. Various testing; including MRI’s (every 3 months), a CT scan, MIBG scans, x-rays, echocardiograms, lumbar puncture, bone marrow aspiration and ultrasounds. His treatment has included steroids, chemo IVIg & Rituxan. With medication we’ve managed to control Grayson’s OMAS symptoms and his Neuroblastoma is stable. We’re not sure when he’ll be off medications for his OMAS, but our goal is to eventually wean him off of all meds; which is a slow and grueling process. Grayson is our little warrior and we are so proud at how he’s handling everything that life has thrown at him.
More Info on OMAS & Neuroblastoma
Opsoclouns-Myoclouns-Ataxia Syndrome: https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
OMSLife Foundation – dedicated to raising awareness for OMAS, research and assisting patients and families fighting OMAS: http://omslifefoundation.org
University of Iowa Dance Marathon – a student run organization that provides emotional and financial support to pediatric cancer patients and their families treated at the University of Iowa Stead Family Children’s Hospital: https://dancemarathon.uiowa.edu
Beat Cancer Today – Their mission is to “create awareness of childhood cancers and to provide financial support for childhood cancer research, and for patient and family support programs.” http://beatcancertoday.storenvy.com/our-mission
Please keep Grayson and his family in your thoughts and prayers as he continues his journey!
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