The long road home

When a child begins treatment for cancer, the doctors have a plan. There are protocols and steps to take, medications to give and surgeries to perform. It’s a careful order. When a child begins treatment for cancer, each family reacts in its own way. They have to adapt to a new way of living. The routines they had before get put on hold. Often, it’s divide and conquer. A family split by thousands of miles. This is how it happened for Joel. When he learned his son Jennings had leukemia, he was at the airport. About to go on a business trip. His wife Lauren called him from the doctor’s office, crying as she told him the news. Fast forward a few months – no more business trips – Joel is at Jennings’ hospital bed, 24-7. 

I’m Geoffrey Redick, and I make audio stories about the patients and families of St. Jude Children’s Research Hospital. Karina Bland is one of the people I work with. She talked with Joel for hours and wrote a story about him and Jennings for St. Jude Inspire. 

Karina Bland: 
When you spend that much concentrated time, you know, when you're the person, you're the parent that the child depends on. It's a role that you take obviously very seriously and one that he really embraced. You know, a lot of times in families, there's someone you go to when you want to play. There's someone you go to when you need a hug, you know? And he became both parents in that moment, you know, all the time. 

Geoffrey: 
While Joel’s wife Lauren was at home in North Carolina caring for their other children, Joel was in Memphis at St. Jude, learning how to flush Jennings’ central line, how to change a dressing. Offering comfort and distractions. And years later, when Jennings was back at square one, it was Joel’s blood that gave his son a second chance. 

We’ll get to that part of the story. There’s a lot to tell you about first. That’s how Joel moves, step by step. He’s an engineer. 

Joel: 
There's not a lot of deep processing in the moment, right? It's kind of, okay, and, you know, if he's still alive then there's one more thing to do. So let's go do that thing. You do that thing and it's okay, what's the outcome of that? Based on that, we do this. It just, you keep doing the next thing. And that's kind of how we approached it. But yeah, if you do have the quiet moment and you sit down and think about the longer term, that's, your mind goes to dark places for sure. 

Karina: 
He also writes a blog called “All In for Jennings” and he's a very good writer. And so that was one of the ways that he kind of not only kept family and friends updated on what was going on with Jennings, but also it was a way for him to analyze his own thoughts, you know, because when you have to write something down and explain it, you put it down in words, it kind of helps you to make some sort of sense out of, out of a situation that seems so senseless. 

Geoffrey: 
It stands out to me that here's a dad who's far from home at St. Jude with, with his son. Often, you know, the, the kind of stories that you and I hear about when we're going to tell them, it's the mom in the family in that position.  

Karina: 
In their case, and one of the reasons his wife Lauren was so insistent on finding out exactly what was going on with Jennings was that she was about to give birth to twins. So Jennings started chemotherapy treatment at home in North Carolina. And two weeks into it, you know, his mom kissed him and took the elevator two floors up to the maternity ward to give birth to their twins. And so she was in a position where she had a child who was ill and desperately needed her. And then she also had two brand new babies. 

 Joel: 
He was starting to really lose his hair. And Lauren really wanted to comfort him and be there. They wheeled her in a wheelchair down from the maternity floor so she could hold him while they shaved his head. It was a mess. And then, I mean, all that was five days before Christmas. 

 Geoffrey: 
So all of the coming to terms for that family of, okay, this is what we have to deal with now happened in their home state of North Carolina. Then they came to St Jude for the first bone marrow transplant. 

Karina:  
So they checked into St. Jude on Jennings’ third birthday, which is kind of the meanest birthday present you can give a kid. And, you know, so the bone marrow transplant was, was the best, you know, hope for curing Jennings, which the family was able to do using a donation from his sister, Caroline, who was four and a half years old at the time. And a perfect match. 

 Joel: 
I remember thinking, not knowing, you know, if the transplant is the best thing out there and the biggest gun against this, why wouldn't you just always just do that? And after you go through a transplant, you realize, yeah, you don't know what you're asking for. 

Karina: 
A bone marrow transplant is tough on, on a little body. 

 Joel: 
Any hair, anywhere that hadn't already fallen out fell out. Eyelashes, eyebrows, everything gone. He stopped eating, which is typical. But it was something we were really hoping to avoid. So yeah, he had an NG tube placed, which is a traumatic experience. There's, there's just all kinds of things that happen on a transplant floor that don't happen in other care environments because of the risk of the patients there. They're just so immune compromised that, that means, you know, you get a fever and they're going to poke you, and that’s hard to watch. 

Karina:  
All those things are necessary. All those things were going to help make Jennings better, but it was really hard for him as a parent to kind of endure that, you know, and he talked about how sometimes, you know, when Jennings was asleep, he would, he would have to go for a walk and kind of just move away from it for a minute.

  Joel: 
The days are hard to get through. You don’t think long term, think short term, get through that, you know, get to the afternoon, get, get through dinner, go to bed, kind of break it down into manageable chunks of time. 

Karina: 
To keep a three-year-old entertained, you know, reading the same books over and over again or putting together the same puzzles over and over again, when you yourself are just probably exhausted and scared, you know, but to not let your child feel that, it's a, it's a whole different kind of parenting, wouldn't it be? 

Geoffrey: 
So Jennings makes it through all of that. And so they, they get to go back to North Carolina and, and like rejoin the family. And this is in the summer of 2018. They must have been overjoyed.  

Karina: 
Yeah, absolutely. Because the family as a whole was able to spend time together in Memphis. But there's something about going home, isn’t there? I mean, it's one thing to be in a strange place that that over when you spend that much time, there becomes sort of like a second home. But going home, really going home, is a whole different thing. And so for them, it was a chance to kind of get back to what their life had been and really with the arrival of the twins who Joel didn't get a whole lot of time to spend with them because he was at the hospital so much. 

Joel: 
I'm basically walking into their lives. They're six months old. We have their older brother who, you know, now I'm super close with and he's like, you know, fighting for his life and so I have very little sympathy for, you know, things that a six-month-old baby does. And on, you know, Lauren’s side, she didn’t have that time with Jennings, and she would go long stretches without feeling connected to him you know that would impact her relationship with the twins because they were the reason that she couldn’t so it was, it was a lot.   

Karina: 
It was a chance really for them as a family to kind of get to know each other all over again and to kind of have that time together. Jennings changed really in front of their eyes, right? So he, his hair grew back and it came in darker and coarser than it had been. And he began to start putting on weight. And so they could kind of see this healthy kind of glow coming back to him. And so for two and a half years, you know, the family resumed the life that had come to such a sudden halt with his diagnosis because his checkups were good, he just kept getting stronger and he got to play with the siblings and play in the forest and jump on the trampoline and all the things that are just kind of staples of childhood. 

 Geoffrey: 
And then it all slammed shut. 

Karina: 
Yeah. So Jennings would continue to have regular checkups, you know, both at St. Jude and also with his local clinic, so that they could monitor his levels and make sure everything was doing great. And it was doing great until November of 2020. And it came back, the result was that Jennings’ white cell count was the same as it was when he had been first diagnosed. So Jennings had relapsed, and they’re suddenly just like plunged back into this world that they had been sure that they had left behind. 

Joel: 
We had been through this journey before. And for relapse, there's not a different journey. It's the same journey. It's just hoping it works this time where it didn't work last time. And so to be at, you know, back at the beginning of that, looking back down it was, that was hard. 

Karina: 
They knew what they would be facing, you know, another bone marrow transplant, another separation, more time away from home. And luckily for them, Jennings didn't really remember what he had gone through. You know, he was such a little guy that his associations with being in the hospital were all very positive because what he went through with the first bone marrow transplant, he didn't seem to recall any of that. And so for the second transplant, Joel and Jennings made that drive together from North Carolina to, to Memphis. And the rest of the family was going to pack up and, and follow after them. But on that drive, you know, Jennings was like, Hey, how much longer? Like, you know, he can't wait to get there. And all Joel can think about is knowing what was to come. 

Geoffrey:  
The second time around, Joel would be doing more than comforting and changing dressings. The cells for Jennings’ second bone marrow transplant came from his dad. St. Jude pioneered a process that uses a donor—usually a parent—who is only a partial genetic match. That process is now used around the world.   

 Joel: 
The benefit of the transplant in general is that it's different from the original. The downside of the matched sibling is that it's, it's not that different. It'll have a harder time recognizing a leukemia cell because that leukemia cell came from the stem cells that are very closely matched to, to it. If it's only half as similar, that new immune system is much more likely to recognize that potential leukemia cell as not from me. And so I'm going to destroy you. 

Geoffrey: 
When they were in Memphis in this you know, these, these long months after these transplants, each time they got to stay in this particular house. And in the story that you write, you begin with the scene of them leaving that place. Why did you start there? 

Karina: 
When we talk about having to be away from home, it you know, you do find other places, don't you, that can become like home for you. And that's really what happened to this family since they were there for so long and two different times. 

Joel: 
I remember standing out front, looking at the house and kind of, you know, saying bye to the house one last time, because we spent a lot of time there. Some of the hardest seasons of our life were in that house. So, yes, it's hard, but it's more like it's that place was a comfort and a good thing for us. And so there's good associated with it. 

 Karina: 
You know, the twins learned to sit up there and then they learned to walk there. You know, Joel and Jennings would put together these massive Lego projects there. You know, the kids would ride bikes and they would play outside. And it became, I think really what they were doing is inserting as much normalcy into a situation that was, you know, far from normal. And they were able to do this because they had basically a second home. And I was just really intrigued by that because that just that whole idea about, you know, where is home? Is it, is it your physical address or is it as long as you're with the people that you love and that your family is together, that becomes home. 

Geoffrey: 
What sticks with you about what Joel told you? 

Karina: 
Every so often you come across somebody who tells you something or has an experience that makes you kind of reexamine your own life and makes you much more grateful for what you have. And, you know, for, for Joel, it was when he was talking to me about how everyone assumes that tomorrow is going to come. 

Joel: 
For us, the veil between this life and the next is a lot thinner than it is for a lot of people. You plan for tomorrow and you think about tomorrow, but the truth is you don't know what's going to happen tomorrow. And that's true of everyone. But, and this was true of us, most, you don't live in that reality. You live as if you can make plans for tomorrow and tomorrow will happen. And so something like this kind of really does give you that, you do live in that reality, and that is how we view a lot of life now, is through that lens of, appreciate every day and don't cling too tightly to, you know, what you got planned for next year.  

Karina: 
They live their lives for every moment. And I keep thinking about that, like I find myself, you know how your mind always floats to, you know, what do you have to do at work or what's going to happen next week or all those kind of things? And since talking to Joel, and meeting Joel, it just has kind of kept me more in the moments of my life, because what he said is true. 

Geoffrey Redick: 
Karina Bland is a writer for St. Jude Inspire. You can find her story about Jennings online at s-t-jude-dot-org-slash-inspire.  

 You can find lots of other stories and videos about patients and their families there. That’s also where you can make a donation to St. Jude. S-t-jude-dot-org-slash-inspire. Thanks for your support. 

This episode was edited by Grace Korzekwa Evans. Louis Graham is the executive producer of St. Jude Inspire. I’m Geoffrey Redick. 

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