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My Child Has Leukemia: Now What?

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Published on August 18, 2020

Pediatric Acute Lymphocytic Leukemia: Advice For Parents

How can parents of a child with pediatric acute lymphoblastic leukemia (ALL) work together with their doctor to feel comfortable during the treatment making process? Pediatric ALL expert Dr. Allison Grimes from UT Health Sciences San Antonio shares her approach to partnering with parents during this difficult time. Kristin and Garrett Leihsing, the parents of Jaden, who is a childhood acute lymphoblastic leukemia patient, give advice to other parents who might be going through a similar experience.

This is part four of a five-part series, which includes:

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Transcript | My Child Has Leukemia: Now What?

Andrew Schorr:
I've heard it said that treating cancer, this is really a team sport. And Dr. Grimes, maybe you could talk about the partnership between the family and the patient, and you and your team. Could you talk about that for a minute?

Dr. Grimes:
Yeah. I mean, team is truly the right word. We become a family. The medical team becomes a part of the family. Not only has Jaden been just a superhero throughout this process, really this entire family has. You have already seen described here the roles that this family has taken on. Even Jaden's sister, who was also a toddler at the time of diagnosis. The parents have to be empowered to feel like not only are they making the primary decisions in medical care, but they understand the nuances of what goes into that decision and how that impacts the child, their family. And that really is the role of the medical team is to not make that decision for the parents but to give them the information, provide the education, all of the knowledge that's at our fingertips, which obviously is changing all the time.

So that together, I can provide the Leihsings with what we know about therapy, about childhood leukemia, and then specifically about Jaden. Because he's not a statistic in this. It's him, this is their child, and for them to know how to make the best decision for him, it's really based on all of this other features. What's happening in the family, how other children in the home are doing, the work burdens, whether there is any family support and what that looks like.

And then for Jaden too, at the end of the day, those medicines only go down if he agrees. We all know. We can be as creative as possible, which this family absolutely has. But at the end of the day, it really takes his engagement. And that engagement only comes with trust. So Jaden has to trust me, even when I'm asking him to do something that's uncomfortable, that doesn't feel good, including procedures. And he has to feel comfortable enough that he continues to come back to clinic. I mean, yes, you may have to drag him some days, but his consent in the process is really important, and he has to feel like his say matters.

So, when he has questions, when he's feeling bad, when he doesn't understand or is confused, or is upset, that has to be addressed, and that has to be the most important thing in that moment. Or you've lost part of your team. And you're not going to get through this. Getting through therapy and that cure in the end, which is all of our goal, is really about engaging the whole team, which is not only the medical providers, but the parents, the patient, and the siblings.

Garrett Leihsing:
We felt very comfortable with the medical team throughout all of this from day one. There was never once a moment where I looked at my wife and said, "You know what? I don't trust what they're saying, or that doesn't sound right." So we really did have to put all of our trust into the medical team. And the same thing with our family. The support system. I've said it to Kristin before that I don't know how some families go through this kind of thing without having that family support. What if we lived in another state and we didn't have our families five minutes away? Things along those lines.

One thing I would say, I know from my experience going through this that I put my head down, and we just got to get through it. We got to get through it. One thing I didn't do is actually deal with the emotional side of it, which I haven't yet. And my wife will tell you that too. I haven't really talked about it in this form or fashion since 2018. So I would venture to say that don't wait so long for something like that.

Kristin Leihsing:
Any questions that anybody has for any parents, just write those down. Because when you go to clinic, sometimes those questions end up leaving your mind, and you end up forgetting. So, just keeping that pad, or that pen and paper ready to go and ask those questions, there's no silly question, there's no stupid question. Our team is now our family, so I believe that even though that his cancer journey is coming to an end, that we'll still be in contact with all of our nurses and our doctors. So they've definitely become a part of our family.

Andrew Schorr:
So, communicate. It all comes down to communication, right?

Kristin Leihsing:
Yeah.

Andrew Schorr:
And I think what you were saying Garrett, is even communication in your own mind, with yourself, is talking things through and getting help if you need it too.

Garrett Leihsing:
Sure, that's one thing I didn't do. I didn't process it, I just... I said, "We got to get through this, we got to get through this." I like to fix things.

Andrew Schorr:
Yeah, but you don't have to be macho man through this...

Garrett Leihsing:
I know. I know. I learned. 


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