Shelby’s story as told by her parents, Jon and Barbara – parents coping with their child’s cancer

From Children's Cancer Hospital
Date: Fall 2007
Duration: 04:50

Jon:
And running in the background of your mind, I think you're always saying, maybe it's a mistake. Maybe they're wrong about this.

Barbara:
They got the wrong section and they’re going to have to retest it.

Jon:
You’re always hopeful but it's the scariest thing you can go through. Things go white and stay that way for a couple of months.

Narrator:
And so the journey began for Jon and Barbara, when their active 12-year-old daughter, Shelby, was diagnosed with Ewing's Sarcoma, a rare type of bone cancer.
 

Jon:
You know we all react to stress differently but at times like those how we as parents react to that stress has a direct bearing on our child which to a large extent is looking to us the parents to see how to act. She wasn't keen on talking about it. And one time I said, Shelby I know you don't want to talk about it, but is it okay, if I talk and you just listen? She said that'd be alright. So, I just talked about things like, okay if you can envision your best, the best example of someone that was an amputee, that was the most well adjusted, what would that be? What would describe that person? And really I guess what I tired to do is just introduce these ideas into her brain. She's a 12-year-old girl. She has never seen an amputee. Much less did she know really how to become a successful amputee. What I mean by successful is one that is not bitter, one that doesn't feel sorry for his or herself. And just moves on with life like nothing happened. And that's something that the parent or a trusted adult can lead the way on that. And I think that's part of the parent's job. Again we can't cure the cancer. The doctors do that. But we can lead the way in how to approach the life after cancer.

I remember I'd come home with friends and there'd be a sign on the door that said, “Don't cough when you're inside. Shelby's blood count is low.” And I think that was the worst time.

Barbara:
It was during his spring season when he had many, many baseball games and we made sure one of us was at every single athletic function that he had. One could be at the hospital, but one had to be with Shea. There was only one time and that was the day of her amputation. The two of us did stay down at the hospital and spend the night with her that night. Every single night, one of us would go home and one of us would stay at the hospital just so he felt that we were still a cohesive family unit.

Jon:
As a parent I think it’s your job to just keep the ship upright. And there are some stormy waters here but try to think clearly and things can be easier than what they might otherwise be. When children get this bad news they want to blame somebody, the doctor, or something like that, and if the parent backs that up again, that just contributes to some negative situation. The second thing, I think is to remember that your spouse is feeling just as scared and heart broken as you are. So, you have to support one another and even if you're feeling down, and if you notice that your wife or your husband is also feeling down, may be its time to buck yourself up a little bit. That would be my suggestion. Otherwise, let’s face it, we can turn a bad situation into a terrible situation if you're not really taking care of one another along the way - being sensitive to each other's feelings.

Its important that the parent makes sure that the child follows the chemotherapy protocol as close to the letter as possible. We've seen cases where people blew off that last chemo, or said, let’s put off that last round of chemo for two months.

Barbara:
Because we've got a trip planned or something.

Jon:
Yeah, we've got a trip planned and...

Barbara:
Just follow what the doctor says.

Jon:
It's a bad idea. You need to do exactly what the doctors say. So we learned very quickly to rely very heavily on the advice M. D. Anderson was giving. They never said this is the way we're going to do it. They gave us options. We made the decisions, but they were very helpful in guiding us along those lines.

Shelby:
I remember I was worried about things like, nobody is going to take me to the prom and you know, I'm not going to be normal. I'm always going to be, you know, the girl that had cancer. But it’s not like that at all. It’s not like that at all. And it’s definitely what you make it. It can be a horrible experience or it can be a bad experience that you sort of learn from and that you're a better person from.