St. Jude is "the right place at the right time" for brain cancer patient Von
First-person essay by Von's mom describes their journey to "the right place at the right time," St. Jude.
In 2016, my husband and I thought we were hearing the worst news of our lives.
We were wrong, the news could be worse. And in 2018, it was. December 2018, with Christmas around the corner, we were advised to prepare for the death of our youngest son, Von.
To hear that your child has cancer is one thing. To hear that your child is going to die is a completely different thing. But unbeknownst to us at the time, we were about to be shown a path.
My family’s path to St. Jude Children's Research Hospital was preceded by more than two years of Von’s treatment for anaplastic ependymoma, a cancerous brain tumor, at our local hospital. Right when a referral to hospice left us feeling lost and defeated, wondering how much time remained before we’d have to say goodbye to our precious boy, the story and image of another little boy kept finding its way before my eyes. This boy was about Von’s age and also had brain cancer, and he was being treated at St. Jude. His name was Cameron. Something within me was saying this couldn’t be coincidence. Armed with faith and a feeling of “there’s nothing to lose,” I decided to find out if there was anything St. Jude could do for Von.
Thankfully, they were able to accept Von as a patient. We learned on Thursday that we needed to have him there by Monday, just four days later. I wasn’t bothered by the fact that we were by no means prepared to make the trip. I knew the Lord would make a way! Our family, friends and church community came through for us in an incredible way and in record time. We prepared our vehicle, packed up our family and hit the road.
When you cross the Mississippi River driving into Memphis, one of the first things you see is St. Jude. When you're driving there with a child who has cancer, I just cannot describe the feeling that you get. It's relief and it's hope and it's just … there's an answer. There's something here. It's not the end. That's how we felt just coming over that bridge and seeing St. Jude. And to walk into the building, it was palpable. You could feel that this is a special place.
Our second night on the St. Jude campus would prove to be a very eventful one. We were getting settled in at patient family housing and Von was in bed when I heard a strange sound coming from his direction. He’s a bit of a prankster, so I thought this was one of his shenanigans. I soon realized this was anything but a laughing matter — he was having a seizure. I couldn’t panic, I had to jump into “go” mode.
Unfortunately, we had been here before: A seizure was what prompted his initial diagnosis. I had no idea what we were facing then, but this time I had a better sense of what was possible. As tears began to flow down my face, I couldn’t utter one word. But my spirit was speaking loud and clear, repeating over and over, Lord, I know you didn’t bring us this far to leave us! I don’t know if it can be considered a prayer at that point but whatever it was, I hoped God was listening. I can’t begin to express how relieved I was when the doctor told me my son was safely out of the seizure and didn’t need a breathing tube.
We arrived at St. Jude in the darkness of night and the darkness of despair. But since stepping on the path that got us here, we have gained hope. I believe we were put in the right place at the right time at many points throughout this journey, beginning with seeing that other little boy. Cameron’s story popped up everywhere when we thought we were out of options. Then the fact that St. Jude had a treatment plan to offer Von. That he had his second big seizure soon after we arrived and not before. And so much more.
At St. Jude, Von's treatment included surgery and proton therapy, and he responded well.
Had anything happened any differently than it did, I don’t know that we’d still be celebrating all these years later that Von is still making us laugh every day.