Three years ago today life changed for my son, Alex. In a matter of 24 hours, his life journey took a major turn from being a typical 4-year-old boy doing typical 4-year old boy things to a child that would face of lifetime of medical, emotional and physical challenges. We woke up this very morning three years ago the same as we always do, business as usual, but with one little telltale sign that landed him in an MRI hours later and emergency brain surgery the next day.
At this moment three years ago, I couldn’t even spell the word craniopharyngioma and never gave much thought to brain tumors. But there I was praying in the waiting room at Johns Hopkins, hoping that he would survive. And in my head, I thought, if he did, it would all go back to normal. On the second night in the pediatric ICU at Johns Hopkins, I did figure out how to spell craniopharyngioma. I plugged it into Google and those hopes of ever getting back to normal dissolved into a list of scary terms or as I now know are referred to as co-morbities – diabetes insipidus, panhypopituitarism, adrenal insufficiency, memory loss, morbid obesity, hypothyroidism, cognitive dysfunction, temperature dysregulation, infertility, vision problems and the list goes on.
Fast forward to today, and while we still have our challenges, recently we have been in a good place with his recovery. It’s a slow process of progression and regression but we focus on progress and not perfection. It has taken every single day of these last three years. Every. Single. Day.
Recently, while doing the winter-summer clothing switch, I stumbled on a little memento of our time at Hopkins three summers ago. After one of Alex’s many inpatient MRIs, a technician asked if I wanted to get Alex a prize from the treasure box. Alex slept through most of his experience there so he didn’t really have the opportunity to make a selection. I pulled out this tacky little purse and laughed that maybe Alex wouldn’t mind if I got myself a new accessory. We settled on something more his speed like some stickers or a Paw Patrol character. A little while later, a nurse stopped in our room with the purse and a note from the tech “this purse is for mom:).” I remember it totally made me smile and I have kept it with the note as reminder of how even the littlest gestures of kindness from strangers, our community, friends and family have made this journey so much more bearable.
Today, on the three year anniversary of Alex’s diagnosis, we open the doors of the Raymond A. Wood Foundation’s virtual art exhibition – the Art of Surviving. We are thrilled with the response from brain tumor survivors worldwide. Please take time this week to visit and see the beautiful expressions of survivors from paintings to sculpture to song. I promise you that you will find inspiration. Be sure to vote for your favorite pieces, read the survivors’ stories and share this project with your friends. Your support of this project is the tacky purse and sticky note — an ongoing reminder that despite some that may seem tragic, blessings emerge.
Tomorrow, Alex will be three years tumor-free. We look forward to continued improvement for him, but this day is always a reminder of how things changed for him and our family. It’s also a celebration of how far we’ve come and how much beauty we have seen in surviving survival.
Please don’t forget to visit the Art of Surviving or make a donation to support our efforts to provide quality of life initiatives for pediatric brain tumor survivors.
