A quick disclaimer, this article has nothing to do with beer, but it’s what I needed to write and this is the website I have.
I should also come clean about the title, music lovers will know it’s from the classic Dylan song, but again, it was the title I was feeling.
April 23rd will mark 9 years since we lost our son Seamus to cancer. The closer we get to that date, the darker I seem to feel. What makes year 9 so hard? I have no idea. I just know that I’m struggling. I can’t seem to find peace. Joy is getting harder to come by as well. It’s getting harder and harder to find the smile and laugh and offbeat sense of humor that I feel folks expect from me.
A little back story. Up until the the diagnosis of leukemia on February 14th of 2012, Seamus never had so much as the flu, or even a common cold. He had the perfect immune system until he had none.
He was admitted that day to St Louis Children’s Hospital. He had an amazing team of doctors and he went into remission soon after the initial induction.
Unfortunately, the leukemia came back about a year later. This time though, it came back with a vengeance and none of the subsequent treatments worked.
It was becoming inevitable that we were going to lose Seamus. Then we were informed about a possible Hail Mary, a possible miracle.
St. Jude’s was doing a new clinical study, and although Seamus didn’t qualify, they had the ability to let his team of doctors administer the treatment. It wouldn’t have affected their study whatsoever. All the great things we had heard about St. Jude’s, we were excited about this possibility. They refused us, they refused Seamus, and Seamus died. There was no guarantee that the treatment would work, but they had the ability to give the doctors “Compassionate Use” of the treatment and they chose not to help. I feel the need to reiterate that even if the treatment didn’t work, it wouldn’t have affected St. Jude’s study in any way.
With their refusal we had to accept the reality that we were going to lose Seamus. We watched as Seamus took his last breath. We lost our son and to this day we have no idea what caused the leukemia. However, we do know that St. Jude’s had the ability to help and chose not to.
And that’s what I’ve been struggling to come to terms with. A hospital with what seemed to be an impeccable reputation refused to help a brilliant 14 year old young man.
Of course I carry guilt. Was it the chemicals I used in carpet cleaning that caused his leukemia? Should we have insisted on an alternative treatment? It’s not even a daily struggle, it’s a minute by minute, second by second struggle. A never ending internal struggle. What could I have done different!
And I can’t come up with an answer.
Why did he get leukemia? Why didn’t the treatments work? And why oh why wouldn’t St. Jude’s help?
I have to come to terms with the fact that there is no answer. I’ll never know the answer to any of these questions and even if I did, Seamus is still gone.
Grief is ongoing and never ending and it doesn’t run on a straight line and some moments I’m just not sure how much fight I have left in me.
I try to focus on what I do have. My incredible wife, who’s dealing with the same grief, still stands by me. My wonderful daughter and grandkids. I try to stay positive and present for them. But … but some days, some moments I’m just not sure how to make it through.
I’ll tell people you either keep going or you don’t, there’s no getting over anything. So, I write this as therapy, hoping that putting it down will help in some way, so as of this very moment, I’m still going.