03/22/2024
As a parent you celebrate, and remember, your child's firsts; their first smile, their first word, their first steps, their first day of school, but when you have child diagnosed with an illness, you also recognize and remember Diagnosis Day (D-day). Today is D-day #1 for us. The day Grayson was officially diagnosed with Opsoclonus-Myoclonus-Ataxia Syndrome.
Eight years ago, today, I was alone with Grayson in the playroom, on 3J at the U of IA, trying to entertain him while Mike took a break from the hospital to spend some time back home with Landon and Lillian. The neurologist, who we had met after being admitted from the ER, found Grayson and me in the playroom and handed me a post-it note with the words "Opsoclonus-Myoclonus-Ataxia Syndrome." I looked at her and said, "ok," with hope in my voice that we'd give him some medicine to make him better and put the nightmare of the past month behind us. I had no idea what was in store for us. She explained how rare OMS is and that there was no cure. 💔 She went on to explain that 50% of OMS cases are a result of a cancer called and she was referring us to the pediatric oncology department for follow up. 😭💔 Fast forward 8 years and that day seems just like yesterday. Funny how memories can pull you right back to the moment when your life changed.
We were blessed (although I believe it was devine intervention) that Dr. Mathews was on rounds the day that Grayson was admitted to the hospital. She had experience with treating OMS patients (most doctors have never heard of it) and she knew right away what Grayson’s symptoms indicated. Thankful to her and her team for their guidance and collaboration in getting Grayson into remission.
Pictured with Grayson (L-R)…Dr. Lutz, Dr. Mathews and Dr. Saade. We were able to see them and say “hi” when we were at the hospital for Grayson’s NeuroPsych evaluation last month. All three of these doctors played a crucial roll in helping to get Grayson to where he is today. Dr. Mathews and I joked that we may have done things a bit unconventionally (and with OMS sometimes that’s what’s needed) but in the end it’s what worked.
