Episode 4 of 6
“Cancer had become my life.”
After 2.5 years of treatment, cancer is your life. It shapes your daily routines, your thoughts. In some senses, who you are. Then – and this frightened Jessica and her family - they send you home to find a new normal. For pre-teen Jessica, it led to a new life. “Her life was on a totally new trajectory when she was done.”
00:00 Group singing: Our patients have the cutest S-M-I-L-Es, our patients have the sweetest H-E-A-R-Ts. Oh, we love to see you every day, now's the time we get to say, "Pack up your bags, get out the door, you don't get chemo anymore."
00:23 Steve: What's beautiful about the hospital is the people there are so... Oh my gosh, just, where do you find these people? They just love on these kids and they kiss them right on top of their little bald heads and, gosh, it's just a beautiful thing. And the research people, the doctors there are just wonderful to these kids, I guess because they feel like they're doing something important, they're changing the world, and anyway, they sure changed our family's, they sure changed our world.
00:58 Narrator: March 20th, 2000. The first day of spring, but the last day of chemo treatment for Jessica. This is St. Jude Flashpoint.
01:13 Allison: It was really bittersweet, because it was scary that they're cutting you loose. Now what? So she gets a cold, what, we just go back to the doctor? What do we do? Literally, I'm like... Yeah, you just go back to your normal life, and it was like a big adjustment.
01:35 Jordan: There was a bit of nervousness because you're then not being checked on anymore. So for two and a half years, you have this support system around you, you're going to St. Jude, those are a new family, those people are a new family. And I remember my mom for sure feeling nervous, and I think Jessica even expressed it too. Because you're not going to get your labs done every week, you don't know how things are going and you're just trusting that things are going well.
02:09 Jessica: I knew it was going to be the beginning of the rest of my life, but it was also really sad and a little bit scary to be closing this chapter, because these people at St. Jude and cancer had really become my life. And so what was it going to be like when I didn't get to go see them every week and have that confidence, "Oh, your blood work looks great this week." And so that was scary.
02:40 Steve: Yeah, there's like a little, I don't know if you'd call it a withdrawal, but it was your life. This thing's about three years, and I think all St. Jude patients live through this. They have a thing called After-Completion Therapy, ACT, which they follow up on them, and I think that's a great thing.
03:00 Jordan: My mom has always been kind of a fun, scrappy fighter, and she was definitely a fighter when it came to Jessica.
03:10 Allison: I just had to dig down inside myself and do it. It just became your way of life for two and a half years.
03:17 Steve: She's short, she's powerful. She's, like, she's... You're four feet nine, you have to be a fighter.
03:23 Allison: You just kinda buckled down.
03:26 Steve: You never know when you have to step up. And, she absolutely drug me through cancer.
03:31 Allison: Of course it was such a relief that it was over, and in fact, that one drug I keep going back to that comes from the Amazon Rainforest, they found it in the rainforest, and it... As much pain as it caused her, it cured her. But there towards the end, I think three months before she was supposed to finish her treatment, it caused her just so much pain. And I was talking to one of the doctors about it, I'm like, "And I just wish we didn't have to do it anymore." She said, "You know what? You're three months out, let's don't." And I said, "Are you kidding right now? Really? You're not gonna make her... " "No, let's just don't do it." And I think I cried. So I'm like, "Thank you, thank you so much," 'cause that by far was the worst thing that she had to deal with every month.
04:20 Jessica: Even when things were at their toughest, there's not really an option in those moments. And as a kid, I felt that even more because I knew I had all this life ahead of me, and so there's not a question of "am I going to fight hard?" It's just, we are going to do this, and we're gonna make the best of it. We're gonna try to make the journey as bright as we can.
04:50 Allison: Yeah, I think the cancer... I think being diagnosed with cancer, whether you're a sibling or the patient or anyone in the family, I think it's an immediate moment of, you all jump in to take care of that need. And life changes so quickly that a lot of the innocence of childhood is put on pause for a moment, which, to be honest, is not something I'm sad about. I can't think of my life being any different or wanting it to go any different. I think it's just the nature of the journey. And for me, I guess I sometimes do wonder if... I tend to be a more serious person, I think, and I love to support people or jump in and help if someone needs help, and you have to wonder if your life moments have made me become that way. I think that I definitely have been shaped by the cancer journey, and I would say it makes you grow up really fast and... It's just... There's just a level of being... You're scared, you have to let some of the small things go, and you just have to all move forward and take care of what needs to be done, which is just making sure that Jessica has what she needs. And my silly worry wasn't the biggest issue at the time, and it's the truth, and I knew that.
06:39 Jessica: There were definite fears from my friends, and I did this thing called induction, where you have really intense chemo for a short amount of time, maybe it's a month or so, and then you have sort of a maintenance period, where you can try to have a little bit of normalcy. Doesn't always go down like that, because you have no immune system, and so, the common cold can easily escalate, and you get a fever, and if you get a simple fever, you have to become in-patient, that's because anything can happen and it can become an infection or whatever else. So there were plenty of times, when I wasn't able to participate, or go to school, or go to church, because there were so many germs around, in short. But so, there was a little kid, who told me that he couldn't play with me, and I don't know why, thinking back, but I couldn't brush it off, but that was really crushing, he thought he was gonna get cancer by playing with me. And I was so frustrated at the fact that he didn't know, like, "Well, mom, why would he even think that?"
07:52 Jordan: As a kid, I think it's natural for other kids to be curious about Jessica having no hair, she looked different, and... But I remember Jessica having some really hard days, from questions she got or just feeling not like a little girl. I think those are the moments that you feel helpless, there's only so much that you can do, to support her in those moments, just try to encourage her and make her feel better in that moment.
08:39 Jordan: When I was coming back to school for the first time, St. Jude has this really cool Child Life Program, and they came into my school and my showed my friends this Charlie Brown video, which is something... If they could understand this cartoon... And I think it was like maybe, one of the friends gets cancer and they stayed around and they took questions from the kids, and it was, "Jessica's gonna look different when she comes back, but she's still the same as she was before". And they worry if, "Well, am I gonna get it?" not just, "Is it contagious?" but, "Is that gonna happen to me?" Like, "What did she do in order to get that?" it was something that everybody has to deal with, in a different way and has their own questions about.
09:28 Steve: I don't know if I could say that I blame myself, but you hate that this is in your family. My dad's a cancer survivor, I had cancer, and my cousin had cancer, and you really think, "Oh, this is really something in our family," and you... There's that a feeling.
09:45 Jessica: Think it was March 20th, 2000, is the date in my mind. So whenever I did make it to March 20th, 2000, that was the day we had been looking forward to, for years.
10:00 Steve: Cancer... It was... Obviously, it was long, it was difficult.
10:06 Jessica: And that was the first day of spring.
10:08 Allison: So that day, March 20th, 2000, was her last chemo.
10:13 Jessica: And that was my last day of chemo.
10:14 Steve: And it's forever burned into my memory. And anyway, that's a beautiful thing.
10:24 Allison: Okay, so the film crew was there, the HBO film crew was there, because they wanted to film that last chemo and everything about that day.
10:32 Jessica: So I had a procedure that day, so I had been put to sleep.
10:39 Allison: She had to have... Even though it was her last chemo, it was a big doozy of one. It was a spinal tap, and the whole thing.
10:45 Jessica: But when I woke up, they had planned this huge party for me.
10:50 Allison: She was goony as could be, because she was sedated, just like when you get sedated for anything, like wisdom teeth or whatever.
11:01 Steve: It was just an event. This happens to... Generally, with all St. Jude kids, they meet for the last chemo.
11:10 Allison: And so, they come and they come to your chair, where have the chemo, all the nurses, everybody that you know, and that works in that medicine room, and those people are angels.
11:21 Steve: And they sing the, "Out the door, you don't do chemo anymore".
11:26 Jessica: There's always this no more chemo song, it's to the tune of the Oscar Mayer Wiener song, and that is everybody's rite of passage, you look forward to hearing this. But my nurses wrote me this other song, and it was to the tune of Delta Dawn, and they sang that first, and then they sang the "No more chemo" song and threw confetti, and silly string, and we had our family there and we had my teachers there and their family and we had just nurses who had become special to me, along the journey.
12:06 Steve: And then they throw confetti, and all the family's there, and as many people as you can pile in there, and the patients and the nurses, it's just the most wonderful thing.
12:18 Jessica: And it was an awesome day, and then we kept celebrating, we had a "no more chemo" party, and we had 250 people come. I'm thinking back now, I'm like, "Goodness, how do we... Do we do know that many people?"
12:30 Allison: I'm here to tell you, there was a cantor in every corner of our house, there were cards, gifts, dishes, where people had brought food, the house was literally full of it, just from the support. So we just had to take stock and because we had so many people to thank, all the people that... At the school and just even her doctors came.
12:54 Steve: It was just fantastic. And so many people came to it, doctors, nurses, friends, church people, kids from school.
13:04 Allison: We had it catered, we had barbecue and...
13:06 Steve: We had someone to be a DJ, a musician showed up, Martina McBride's guitar player showed up, and his wife, and anyway, and they played for the whole thing. It was really fun with them.
13:19 Allison: Just a lot of fun. It was a big... It was a celebration.
13:24 Steve: She literally, has seen miracles, having just unbelievable stories, and really tough stories. Kids that she really loved, they were... And they literally were going through these treatments and meeting, getting chemo and everything, and they didn't all win their battle.
13:51 Narrator: Up next, as her treatment ends, a new life for Jessica begins.
14:00 Allison: She was almost 12, when it was done, and so right away, she became a teenager, and everything that goes with that.
14:07 Narrator: College, careers, Hollywood and a renewed purpose to give back to the place that saved her life. Rate, review and subscribe to St. Jude Flashpoint on Apple Podcasts, or your favorite podcast app. Learn More, donate, or volunteer, at stjude.org. Finding cures. Saving children.