Everything will be Okay

March is an important month in Josh’s cancer story. He was transferred from the ER in Mount Pleasant to Devos Children’s Hospital on March 13, 2019 and diagnosed with brain cancer shortly after. The operation to remove the original tumor which was causing his symptoms was on Monday, March 18, 2021. He would pass away not too far past March on April 2, 2021. I wanted to share some memories from the time we had with Josh during his cancer battle.

I think that I have been suffering from a log jam of lots of different thoughts, and hope that by writing the following down that I am able to clear some of it. Not to eliminate these thoughts, but to capture them somewhere so that they no longer linger inside my head.

There is a part of our story with Josh that I seldom talk about, but popped into my mind while I was writing my earlier post. I’ve decided to share it as a separate post.

The morning of the Monday when Josh was scheduled to have the tumor removed, we visited with him briefly before he was wheeled into prep for surgery. This would have been six days after his brain cancer diagnosis, and almost a week after his doctor’s appointment where his doctor observed symptoms of a neurological problem.

Everything had been a whirlwind up until that point, from rushed arrangements for someone to stay home with Elijah so the both of us could be in Grand Rapids, to just processing his prognosis, and finally uncertainty about when the surgery would take place. Only the day before, the decision was made that they couldn’t wait and the surgery had been scheduled for Monday morning. During those few days life had gone from ordinary to a fly-by-the-seat type of chaos that I had rarely experienced up until that point.

When we visited Josh before he was wheeled away to be prepped for the surgery to remove the tumor, he seemed to be in pretty good spirits. So good, that I almost wished that a doctor would come in and say there had been some kind of mistake, and we could take him home. I was overwhelmed by fear over how the surgery might go, and anger over the injustice of Josh having cancer. I walked up to his bedside to share words of encouragement, but I couldn’t think of anything that felt appropriate. I started to tear up, and he told me not to worry and that everything would work out. And, ironically, that’s probably what I might have told him if I had thought of it first.

This was the last thing that he said to me before his surgery. In my struggle to comprehend what was happening, it never occurred to me how much damage might remain after the tumor was removed, either from the surgery, or the presence of the tumor itself. And, of course, at the time we were just hoping that the surgery would be successful and save Josh’s life.

But, there were lasting effects from the tumor, and while Josh was out of the woods he awakened post surgery with cognitive issues, unable to speak, and unable to move either his right arm or right leg. He had a long road ahead with lots of months’ worth of physical therapy, radiation treatments, and chemotherapy in his future. But, it was that moment before his surgery I was reminded of, when the last thing he said in a full statement without struggling to find the words was, “Don’t worry, it will be okay.”

And, although we didn’t have this discussion again, his perseverance and strong attitude personified this short statement, as if the words had been etched into his mind. The teenager who we once had to ask over and over again to pick up his room, or apply himself in school was now throwing everything he had left into therapy, and learning how to talk and walk again. By the end of that following June he had gained enough ability that Mary Free Bed discharged him, and he walked out of the wing on his own. By the fall, he had gained back additional verbal and physical skills enough that talking wasn’t as much of a struggle. There was a point where it began to feel like Josh had been right all along. Life might not return to the way it was before his initial diagnosis that March, but if the therapy continued to help him to improve and the treatments could help us keep the tumors under control, he might have a relatively long life. Life would never be ideal, but if all of this happened, we would be okay.

But, of course, there were new tumors, and more radiation, and a switch in chemotherapy, and his health went down hill. It was as if the rollercoaster we had been stuck on suddenly skipped the track and all of the worse case scenarios were hitting all at the same time.

Would it be okay?

Hospice was brought up.

Would it be okay?

Josh turned down the possibility of a trial cancer treatment. It was good to have the option, but he had enough of the long car rides and medical procedures. In general, he was tired of everything.

And, we were not okay.

Josh passed away on April 2, 2021, a day celebrated that year as Good Friday. I take some solace that while we lost him to cancer, at the same time he defeated it through death because now he does not feel any of its symptoms. It was tough saying good bye, but I am grateful that we had him in our lives for three additional years following his diagnosis, and while they were intense we had many happy moments with him. I feel like our relationship had grown stronger over that time.

But, I’ll always remember the wisdom of those words that morning of his operation. Did he believe it, or did he want me to stop worrying, or a little of both? As it turns out, his journey was one that he would see through right until the end. Now, its up to me to find the strength to trust that life will work out for the best if I continue to apply myself and, despite what’s happened, that everything will be okay.