Dying with dignity

I think we’re all a bunch of friggin’ morons. Me included. Why? Because we think we have the right to infringe on everyone else’s life, while living the way we want and getting upset when anyone else has an opinion about how we’re living. Hypocrites. Every last one of us. The Internet and social media has taken this to a whole new level and I’m frustrated to no end. We’re all sitting on our high horse, judging everyone else for simply living their lives. Or choosing to end it. It’s not up to me, or you, or anyone else. So, shut up.

I just read an article kinda slamming Brittany Maynard for her choice to end her life. Apparently, the author of the article states that her mother has the same disease as Brittany, but her mother has chosen to live her life – as is – until cancer completely takes over. The author is mad that people are stating that Ms. Maynard died with dignity… so what does that say about her mother? That she’s a coward for fighting to the end of her life? Well, I for one don’t think that at all. Ms. Maynard made her choice based on her options and this woman’s mother is making her choice based on her options. Same disease? Sure. But not always the same case.

My son has neuroblastoma. If you’ve been reading my blog for any length of time, you know this. This particular cancer is nasty. It’s horrible. It’s debilitating. There’s NO cure. And, so far, my son has beat the odds. Almost every single friend we’ve known with Neuroblastoma (who has relapsed) has passed away. We face this heartbreaking fact every single day. But Ben is still in a good place health wise. He’s exhausted, for sure, but willing to continue the fight. For now.

There might come a time when he chooses to end treatment. His quality of life might plummet to the point of making it unbearable to face another day. I think about this more than I care to admit. He’s getting old enough to make that choice for himself and if he ever does make it, I know it will be something he’s debated through to exhaustion.

Will I be okay with that choice? No. I never want to lose him.

Am I okay with the fact that cancer has beat him up for nearly 11 of his 13 years? No.

Do I want the best for my son? Absolutely. Might that include leaving this disease behind and ending his suffering? Yes.

I’ve seen my son at his worst. During his bone marrow transplant he nearly died three times during a 31 day period. I begged for his life to be spared. During a routine scan, the doctor nearly killed him by overmedicating him. I begged for his life to be spared. During his 3F8 therapy – two long years of horrendous pain – he passed out every day – either from pain medication or the pain itself. I listened to him scream as the therapy attacked his nerves. He once told me that he’d rather die than face another day of that therapy. I begged for his life to be spared.

So far, it has been. And people have told me to “keep fighting” while others have asked “why continue?” And guess what? It’s not up to you. Now that Ben is getting older he has more of a say in what happens to him treatment wise. I want to keep my son forever. But he might get to the point of being so tired that he’ll make the decision to stop. And my job is to support him. Love him. Care for him. Forever. No matter what.

Would I try to talk him out of stopping treatment? Probably. The fear of losing him is something I live with every day. But if it gets to the point where he’s having seizures or I can see the tumors bulging from his precious body or he’s in immense pain, I think I would have the courage to let him go if that’s what he wanted. It will never be what I want, but it might be what’s best.

Many will think that this would be committing suicide. If there’s no treatment options left, then what’s supposed to happen? I have my own theories on this… and I’ve debated this to no end with people of faith. But those same people of faith are not in our position. Even others with Stage IV Neuroblastoma aren’t in our position. We are all very different. If I based our situation on the outcome of everyone else with Neuroblastoma that we’ve known, I would have thrown in the towel long ago.

But today, right now, we haven’t given up. We’re still fighting. And guess what? We’re okay with that. And that’s all that matters. I can’t worry about what you’re doing with your life and how it simply doesn’t affect me. And while I appreciate all the love and support we receive – because we can’t fight this alone – I would hope that you would save the judgment for how you’re living your own life instead of passing judgment on ours.

I promise that I will offer you the same respect.

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  1. well said…..my opinion should never trump yours especially if I have never walked in your shoes. God bless both you and your son, I would have done the same things.
    Keep on keeping on….life is precious while we have it.


  2. Andy’s suicide was the hardest thing I have ever gone through. I would have made the choice to keep him forever. However, Andy was in a place I did not and could not understand–I was not him!! Had I known this was something that was going to happen I would have tried to talk him out of that decision. I did not get that opportunity. I did not understand the pain (emotionally) he was in or to the extent that he felt that pain. What I do know is that my Andy was a fighter and I believe he fought as hard as he could for as long as he could. Another moment was just too much! Having insensitive people say that suicide is the easy way out has NEVER been where my son was. I hope they never will be! Love you all!!!


  3. As always your honesty and strength amazes me. Stay true to who you are and what you believe. With all Ben’s bad luck he is lucky to have you by his side, supporting and loving himxx


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