Parents agonize over clinical trials, balancing the pros and cons and above all else, wanting to do what is best for not just the physical health of their child, but the emotional health as well. In this month’s co-blog, Colorado FACES coordinator and parent Ivy Scherbarth and PPMD President Pat Furlong share their own conversations with their sons about clinical trials and where priorities sometimes lie.
Have you had any similar conversations with your own kids? Please share!
During my life with Duchenne… well, that is still my life, so let me start again.
When Chris and Patrick were alive, I spent a good many hours worrying. Truth be told it was 24/7. I worried about loss of function and had a million ‘what if’ questions around that. I searched every publication, every everything that mentioned Duchenne to understand what opportunities we might have to slow, stop, reverse progression. I looked for clinical studies and trials and most of the time, my searches, my investigation ended with more questions than answers.
And typically, while I tried to save my tears for my morning shower, there were times, many times, when tears were streaming down my face, the floodgates of fear. I typically tried to smile and toss it off as ‘your mom is a little nutty’ when Chris or Patrick noticed and then again, there were times when it was clear they did not believe me and increased the intensity of their questions. Then and only then, I talk about the search for trials, for treatment, for good news, for change, for, oh, ok, for magic.
I wanted a magic wand to remove Duchenne from our house, from every conversation, from every celebration, from every meal. On these occasions, I would sometimes be unable to stop the download, the thoughts and worries coming so fast, and would move on to THE FUTURE and the things I thought so very important for my children, those life experiences that have been so meaningful in my own life. I would talk about college, career, finding someone to love, children, and I would go on and on and about how I saw research and clinical trials to be a bridge to THE FUTURE.
Chris and Patrick were wonderful. Kind and tender with their mother on those occasions when it was pretty clear, I had one of those ‘unraveling’ kind of days, the kind when the world looked so bleak and so dark, that I could not see even one single ray of light. And there were times when I just could not stop myself from talking, afraid to look up, look into Chris and Patrick’s eyes, worried I would see wide eyes full of terror with tears in a steady stream.
At some moment, I would find the courage to look up and would find myself apologizing 100 times over, backtracking, talking about how moms worry all the time. Chris and Patrick were typically dry eyed, a quizzical look mixed with a bit of impatience.
Mom: Patrick, I’m sorry, really sorry. Mom is just having a bad day.
Patrick: It’s ok mom. Really, it’s ok.
Mom: Don’t worry, so many people are working on this. Everything will be just fine.
Patrick: Mom, mom. Stop. I need to call Johnny. He and I divided the homework. I promised I’d have mine ready by 6. And you need to sign my detention slip. Oh, by the way, I said you would drive us to the game on Friday and then pizza.
And that’s what it is about. Not clinical trials and finding magic. It’s about who is going to buy the pizza.
Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.
Are clinical trials like dating? You wait and wait until you've nearly forgotten all about it and then you're finally of age and the offers start trickling in. Come over for this imaging study; I promise it'll be non-invasive; it's only once so there's no commitment; it's all stuff you already know how to do; it's at your local hospital where you come for muscle clinic and we've been friends for years now. No that's creepy. It wasn't like that. Was it? Well, we already did that one anyway and now it's over. It didn't hurt and it was kinda fun. Oh, look another imaging study is inviting us. Hey, this one is kind of the same, still not invasive, all stuff we already know how to do. And, hey, they're not from around here so it'll be with someone completely new. That could be fun. And this one has 12 visits over 4 years. We could do that; it's a bit of a commitment but nothing over the top. Ok, we'll do it. Oh, wow. Here's a cool one. This is an older idea for a study; it's already been proven in similar circumstances with other people. It's a pharmaceutical though; there could be some potentially serious side effects with this one. But it's so promising. It might really be The One! There's some travel and commitment, sure. But what if it really is The One and we miss it?
What if we get the placebo instead of the medicine? What if this dose doesn't work? What if it makes me sick? What if the trial is discontinued even though the drug seems to really help? What if that drug trial over there is a better option but I'm stuck over here in this one? What if I say no when I should have said yes? What if I say yes when I should have said no? Am I obliged to go with trial who asks nicely? Are we destined for heartbreak? Am I ever going to find the right drug that really works for me, the one that I'll stay on for the rest of my life?
O, the angst! The romance! Even if we all have good intentions, and of course we do, things could get messy. Who's having the angst and the romance here? I'm betting it isn't my 5 year old son.
Maybe clinical trials aren't so much like dating from our sons' points of view. Maybe clinical trials are more like military service. Everyone's supposed to get their name into the registry. You could get called up at any time. You go where you're needed. There will be dangers, there will be learning experiences. If you survive your term of service, you'll be part of a brotherhood of people who have been through it too. You'll have memories, some good, some traumatic, that you'll keep for the rest of your life. This is service, remember, so it isn't about you, it's about the greater good. You're part of a team, working hard to make the world a better, safer place for everyone. You can just serve your contract and be honorably discharged at the end of your term, or you can sign on for another few years if they still need you. Everyone who serves is a hero.
Actually, I'm sensing a whiff of romance in this analogy too.
Maybe I should ask my son. You know, the protagonist in this story? The person who is actually experiencing the clinical trial first hand?
Interviewer:Dear Rain. You are five years old. You have already done one clinical study and you've just been invited to participate in another. What do you think?
Interviewer:What was the best part of the study?
Rain:I got a prize! And money. I spent all of my money at the toy store and I got a really cool train and some cows.
Interviewer:Did you feel like a hero?
Interviewer:Do you want to do another study? Only this other one is far away and you and Papa will have to go in an airplane to get there and stay overnight. It's three times a year and it'll last until you're nine. That'll be all the way from preschool until the summer before third grade.
Rain:No. I don't really want to do that.
Interviewer:They pay you $50 for each visit. It'll be your very own money that you earn yourself and you'll be able to spend it on absolutely anything you want. And since you'll be spending so much time traveling, we'll get you an iPad and you can play games and watch movies and have special stories on there whenever you go on the airplane.
Rain: Oh! Yes! Yes, I want to do that! [bouncing] Ok! I'm gonna buy more cows at the toy store. And I'm gonna watch cow movies!
Interviewer:So you're saying that you don't care about doing your duty, serving the greater good, being a hero and all that? You're really just motivated by money?
Rain:Uh huh. I like money. Then I can go to the toy store and buy cows.
So there you have it. There's nothing romantic about clinical trials after all. No emotional involvement at all, in fact, unless you count enthusiasm for small plastic cattle as emotional involvement. Participating in clinical trials is not like dating or military service. According to my son, participating in clinical trials is actually more like a television game show. It's kinda fun to participate but it's really all about the money, the exciting travel, the fabulous prizes … and the cows.
Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.
Pat Furlong, Founding President, CEO
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