Published on August 18, 2020
Managing the Emotions of Having a Child With ALL
What can parents of children with leukemia do to stay emotionally strong while their child undergoes treatment? Kristin and Garrett Leihsing share how they coped emotionally with their son Jaden's acute lymphoblastic leukemia diagnosis while trying to maintain a sense of normalcy for his twin sister, Emma. Jaden's doctor, Dr. Alison Grimes from UT Health Sciences San Antonio, shares good news regarding the risk of relapse or recurrence for children who have had acute lymphoblastic leukemia. Watch to hear their full story.
This is part three of a five-part series, which includes:
Transcript | Childhood Acute Leukemia: Advice For Parents
Garrett, let me ask you, how have you done the tag team as parents where one of you could be with Jaden at times when he was in the hospital and then you have Emma, and it's an emotional time, it's an uncertain time, how do you do that?
Well, luckily our support system is huge. My mom and dad live in the same neighborhood. My wife's mom, Kristin's mom, they live five minutes away. And her husband, we have a huge support system. So, it was difficult at times. When Jaden was first in the hospital when he was first diagnosed, luckily my parents and Kristin's mom kept Emma mostly so we could spend both of our time together two years ago in the hospital with Jaden. We also have a dog. My wife would stay at the hospital that night, I'd take him dinner, and then I'd come home, spend time with Emma, take care of the dog, and the very next morning I'd be right back up at the hospital.
Also, all of this while still trying to work as well. Being in a management position, it just doesn't stop when you leave. But that was okay. The tough times for us, I feel, were the stance where he was inpatient in the hospital because he was sick. And his neutrophil count wasn't high enough for him to be released. There was one time he was in there for 14 days, one time was 17 days. Those were the toughest ones for us as a couple, as a family.
I think out of those 17 days, where I would come up to the hospital, and then my wife would leave to come home and be with... because we have things going on here at the house that need to be taken care of as well. I don't think we saw each other; I don't think we were in the same room with each other during those 17 days for probably more than two hours total out of the 17 days. So it was tough. But we relied on FaceTime, we relied on talking through it all. So we did spend quite some time apart.
What I would tell anybody going through this situation is just find those families, find those other moms that are going through the same thing, and if you have to sit on the porch and drink a bottle of wine one night, then that's okay too.
Other aspect that I want to ask is you've got twins, okay. So, you have one, who's pretty sick, in and out of the hospital, and you have the other one who's healthy. So, how did you parent Emma? And Emma may pop around again, I don't know if either one of you want to comment about it.
She's been a mother bear. She always helps and supports him. She recognizes and knows when he's about to take his steroid, the dexamethasone (Decadron), that for those five days it's going to be a little rocky. And she's like, "I just can't wait until this part's over." But for the most part, she's really been a trooper. There are moments, redirecting comments of, "I wish I had cancer too." Just because of...
the additional attention that Jaden gets that she doesn't. So we just try to do a girls time, just mom and Emma, or dad and Emma, just break it up like that as much as we possibly can. But for the most part, she's been a pretty tough girl.
Yeah. I will add to that before all this took place back in 2018, we were on the go, going to the lake, the kids had just started riding the tube behind the boat, and all of that was taking place. So they were coming into learning those things. Well, since June of 2018, they haven't done that. Emma hasn't been able to do that. Because Jaden can't get in the lake water with his head — above his neck. So there's things that she's had to suffer and not be able to do that we can tell are just eating at her. And so we're looking forward to that.
Okay. So, do you feel like you've run a marathon and you're about to hit the finish line, please God?
I don't know if, I think from this point forward, just knowing in the back of your mind if he's going to have a relapse is hard.
But as doctor Grimes explained, Kristin, most of the time not. Right, Dr. Grimes, you want to chime in here?
Jaden is in the best position to not relapse, which makes this really exciting that we really can very confidently support families, and understanding that with all the kids that are diagnosed with this condition, he has all of the features that put him in the best category to not relapse. And those are being older than one and less than 10 at the time of diagnosis. His initial white blood cell count less than 50,000. And not having any other high-risk features of disease, including that fingerprint that I mentioned on the leukemia cells, lacking any of the markers that are associated with aggressive disease or disease that relapses. He had none of them.
So not only was he standard risk by age and lab features, the leukemia itself was lower risk too. He achieved the remission just like we hoped for, within the first four weeks of treatments, and he has maintained that remission all throughout over two years of therapy. And we're now finishing next month. So, this is what I mean when I say we're planning for his future, I want an invitation to his high school graduation, his first job, and everything that comes after that.
Yes. He's a patient for life. And we're really excited what the future will bring for Jaden and also feel really confident that he's in the lowest risk category for recurrent disease.