Episode 3 of 6
“Is God Mad at Me?”
The unexpected conversation that changed Jessica’s life – even before the first round of chemo.
00:00 Jordan: I remember very vividly when Jessica first started getting sick, and it's because your lives are so normal. You're going to piano lessons and doing normal things, and then everything really turns upside down. I remember very vividly, my teacher telling me that she was gonna take me home, which I guess wasn't super uncommon in that timeline because Jessica had been sick for several weeks and was in and out of the hospital, they were trying to figure out what was wrong. And so I just remember my teacher saying, "I'm gonna take you home," but I knew... I could just tell how serious it was. And so this would have been... This would have been second grade. And so I went home with her and she took me to my house eventually, and then I remember my parents sitting on the couch with Jessica. It was just very solemn, everyone was so scared. And so then they told me she was sick. I don't exactly remember the conversation, but I remember their conversation that night. We were all laying in bed together, and this is actually something that I deeply regret. But I did ask if she was gonna die, in front of her. And I have such regret about that because I know how scared she was and I don't know if that's even where her mom went, but I just know how worried I was about her.
02:01 Narrator: Jessica's journey had just begun, but so had a pattern that would repeat itself. At every turn, there would be someone to help her and her family along the way, someone to just say the right thing or just listen, someone to understand. This is St. Jude Flashpoint.
02:29 Allison: First of all, it's very strange for me. When you are part of that St. Jude experience, there is absolutely no way, at least it was not for me, for you to not have all these spiritual happenings that happened as being a part of that. Our neighbor down the street was a St. Jude nurse, and we didn't ever really think too much about that before we started this. And then our... A little bit closer to our house, our neighbor down the street had been a pediatric cancer patient and lost her leg to osteosarcoma, I think as maybe like a 16-year-old. And so before we... When Jessica was diagnosed, she came down and said, "Well, I don't understand. Is God mad at me? Why me? Why do you think me?" And she said, "Why not you, Jessica? This can happen to anybody. You're not being punished. This is just life. It happens." And for her, and for us, we're like, "Well, you know what? You're right. And so we're just gonna go with this, we're gonna see how to do this and manage this and live our life." And she would tell you, "You don't have to stop living your life just because you have cancer. Life goes on, it's still life. What do you have to do to make your life as normal as possible within that?" I think that was a very defining moment, and that was very early.
03:56 Jessica: In that moment, I remember just falling to the bathroom floor and knowing that my life as I knew it was changing forever. And I didn't really know what that meant, I just knew that that was a defining point in my life. And that was, that was at age nine.
04:20 Steve: Of course, my wife Allilson had gone through... Gotten me through this whole thing, and we... Oh, boy. When you're in that situation, it's very difficult. You're trying to explain, "We're gonna make it through this. This is... It's gonna be rough, but we're gonna make it." And we... The only thing we could really come up with... I remember we decided... We had a few of the neighbors... Literally our next door neighbor was a cancer survivor, and the lady down the street was a cancer survivor, of course, I was a cancer survivor. And we just said, "All those people made it and you're gonna make it, too." That was the best we could come up with at the time.
05:07 Jessica: My dad had cancer when I was five. So he had been off therapy for four years when I started getting sick. But as a family, we knew what cancer was, we knew what the treatment entailed, we knew that there was a fight that comes with it, and we knew that my mom was going to be the staple, the saint that gets us through.
05:33 Allison: My girls went to school at our neighborhood school, which is where I taught. So we... They were students there and I taught there before she was a patient, so we were very ingrained in that community. And because being the art teacher there, and I taught everybody in the school, we had a lot of contacts in the community, and a lot of contacts within that school. And so I just always try to go through any situation knowing that, "We're gonna come out of this okay, but what do we have to do to go through this to remain positive, help other people that might be going through the same thing, or maybe at St. Jude? Whatever is happening to you, there's always somebody else on the other side of that." So we just... That just became our next family, our next group of people. We always had a lot of friends, a lot of family friends, and a lot of... Just always a lot of travel and things, and we just tried to make it become just another part of our life as well as we could.
06:55 Allison: Now, within that, there were times when she was extremely, extremely sick. But then when she was okay, we just tried to do whatever it was that we normally would do. Like she said, when she was first diagnosed, "125 weeks of chemotherapy? Mom, I can't do that. I gotta... I have piano lessons."
07:17 Jessica: As a nine-year-old, two-and-a-half years in an eternity, and I couldn't wrap my head around it. So the first thing that I said was, "Well, I can't do that. I've got gymnastics, and drama club, and homework, and I don't have time to fit this in." And he said, "Well, you're gonna have to figure out how to fit this into your busy schedule."
07:42 Allison: She said, "I can't... I can't do that." I'm like, "Well, yeah, you can. You have to. And we'll figure it out."
07:49 Jessica: When they told me that I had cancer, I knew what it was, I knew what we were about to go through because of my dad. So I had seen my dad... He had testicular cancer, and he had a really intense treatment. And so I had seen him be sick, I had seen him lose his hair, and I knew that that was what treatment brought on, and I also knew that it was an idea that you were gonna have to fight to make it to the other side.
08:20 Steve: I literally didn't even take that many pictures of myself. I was bald-headed, of course, and everything. Anyway, and... But they were kids, and I guess they... I don't know. Kids just think you're going to be sick for a while, and you're gonna come through on the other side of this.
08:39 Jessica: And my parents are very open, and they raised us with a no-secrets mentality. Well, I can tell you that there was only one time when I felt like I wasn't fully brought into the picture, and that was when there was this little patient who was a friend of ours, his name was Martin and he passed away. But I found out that my mom didn't tell me, and that was a really painful and also scary moment for me because I really found strength and confidence in knowing things. Having all of the information made me feel like I could do this. So the very beginning, they were totally open. I don't believe that they were having conversations on the side that I wasn't a part of.
09:44 Jessica: The day was a blur. One of the things I remember was Miss Terry, who was our neighbor, but she also happened to be a St. Jude nurse. She met us there and she said, "Jessica, it's gonna be okay. We're going to cure your cancer, like the chicken pox." And as a fourth-grader, the chicken pox is something you could really understand. And also looking back, that's a really confident... The chicken pox, we've got that down to an art. And that's what she was telling me in elementary school words were, "We've got this, and you're safe here, and we're going to cure you." So that led into us doing some... Meeting my doctors, and the next thing they said was, "We need to do a bone marrow aspiration."
10:45 Allison: First of all, they had to give her a spinal tap 'cause they had to get it in that fluid, and they had to see how advanced it was, and everything they're trying to figure out, what's wrong with her, and she was hysterical.
11:00 Jessica: And I start grabbing my mom, and I'm like, "You said we would never have to do that ever again." And so they said, "Oh, no, no, no, no. You won't feel a thing." And I was like, "Mom, we have heard this. Please don't let this happen." And they were like... "No, but really, you really won't." And I didn't trust or had... I had no confidence in that moment.
11:25 Allison: At St. Jude, they put them all to sleep. They even let me be there. And then once she went to sleep, they send you out to the waiting room. And then because of that, that first time, she had their trust. But yeah, she was terrified. Who wouldn't be? Who wouldn't be?
11:44 Jessica: I was waking up in the recovery room, and I had been put to sleep, as they say. It was full anesthesia, and I didn't feel any of it. And I woke up and mom was crying happy tears because we knew that St. Jude was different. We could feel that this was a place unlike anywhere we'd been before, or any of the other hospitals that we had step foot in.
12:16 Steve: When they go to the hospital, they have a road map that they give them, that they... About how their treatment and what it's going to be like, and all that. From that all I can say, is you just... You're trying to... You just take this one step at a time. And I think that's... As best I could, I would say, don't try to take this in one big bite, just take it a step at a time and eventually it will be behind you.
12:52 Allison: I think it's the first six weeks is called induction, and everything is new, and all the drugs that you have to start. And the first bag at Chemo there hanging literally looked like a garbage bag. It was enormous, looked like Gatorade, yellow Gatorade.
13:10 Jordan: I do remember some really hard days where she was inpatient. So if you're a sicker patient or if maybe you have a fever or something like that, then you would go inpatient.
13:25 Allison: There was another routine to it where three weeks after she got that same Gatorade stuff, that Methotrexate, and then she would get a spinal tap and have it in her spinal tap. After that, the normal thing that happens is that your blood counts tank. But because of that, if you get fever at all, they put you in a hospital of 100.4 or higher. So there would be times when she would be inpatient and that just became routine. "Oh, look, it's 21 days later. Jessica, guess what's gonna happen tomorrow?" "I'm gonna get fever." It's just... [chuckle] It's routine, as bizarre as that sounds.
14:07 Jordan: I do remember my mom, how shocked she was to find out that she didn't have to pay for anything. She went to the pharmacy and I think was trying to pay with maybe a check or something, and they were like, "This must be your first day," one of those situations. I remember her telling us what a relief that that was for her and for our entire family. That would have been an incredible burden for them as parents, but it would also have changed so much about our day-to-day and how... Our house. You hear families having to sell their home to pay for cancer treatment. So we didn't have to worry about those burdens.
14:56 Steve: Jordan was right... She was younger than Jessica, she's about 18 months younger than Jessica. She was really there for her all the time, she was really sweet 'cause they're sisters. And when you're 18 months, you're essentially... It's like you're twins almost, and they're in each other's shadow at all the time. I thought she was really great supporting her sister, and she was there the whole time. All these visits, all these long stays. She stayed quite a bit in the hospital, so that becomes part of your life.
15:31 Jordan: Cancer does affect the whole family, and I remember having some really sad and lonely times. My family really did do their absolute best and they took care of me well, so I don't want it to sound like that. But I do remember some really hard times of Jessica being in the hospital. And all the attention, of course, needed to be on her, everyone needed to be getting her great care. And you can't help it as a seven-year-old to, I think, feel a little sad. Maybe if your mom is... My mom was... Be at the hospital, or maybe my parents would both be at the hospital and I would stay with someone. And our village at the time was so good to me, and I definitely knew how loved I was. But I think there was just something in me as a sibling, I remember some really hard days.
16:34 Allison: For her, I tried to make it, again, as normal as possible. And we were so fortunate that we had these people at my school where I worked who would take her home at night, her teacher would just take her home. "Come on, Jordan. Mom and Jessica gotta go to the hospital, you're gonna go home with us."
16:50 Jordan: My teachers were so good to me, and I would go home with them and play with them sometimes while Jessica and mom were at the hospital, or we would get to go on trips where my mom or Jessica would talk about involvement with St. Jude, and that might have been something that I didn't get to do otherwise. So there's a lot of... I think you do lose a lot of things, you naturally do because your schedule changes. Everything just is a new focus in your life, but I also think there's a lot of really amazing things that come from it; experiences, perspective. I definitely became more independent and I just was able to take care of myself more, and then I was really happy to be able to be a support for Jessica.
17:44 Jessica: When I was diagnosed, Jordan really had to raise herself because mom and dad are working and/or at the hospital with me. And if I'm inpatient, they're having to stay the night there. And Jordan's cooking her own... Standing up on stools and cooking her dinner. And she's the most independent, self-sufficient... She was a little bit like that before I was diagnosed, but I definitely think it sealed the deal forever and she shaped who she is. But she's the rock and she's my rock for sure.
18:19 Jordan: I guess, I did miss out on things, but I don't even really think of it that way. We were in gymnastics and we did it together, so I didn't wanna keep going to gymnastics if Jessica couldn't go to gymnastics. Our every day became, going to St. Jude. So for I think about three months, we were going to the hospital every day. So maybe normalcy is something that I missed out on, maybe freedom in a sense and just the innocence of being a child. 'Cause that's just... It's not something I regret. I think it's just, again, part of that cancer journey.
19:02 Allison: And they... A lot of people understood exactly that. "Look, Jordan's still here." And we would just try to make sure that if there were a school program or whatever, that somebody would be sure to be there. My parents were involved a lot, my parents were retired, their father's family was involved a lot. We just tried to include her and keep it as normal as possible. And I'll tell you, one of the things people don't realize about St. Jude, is what if you're from Lebanon and your two-year-old child is with you as well as your sick sibling. What happens then? What happens? Well, they give them a pillow, and a sleeping bag, and a... They take care of the whole family. Jordan went to siblings... What did they call it? Like one Saturday a month. It was like a sibling support group. But they... She loved it 'cause there were all the other siblings there, too. And they have so many activities for the kids that Jordan got to be involved in a lot of that, too, like just celebrities that would come or holidays that they would celebrate, and they had a siblings room where they could play games or... They'd do such a good job of helping the whole family remain as cohesive and absolutely normal as possible, and we just tried to be very intentional.
20:35 Jessica: Well, the staple in my life is definitely my sister. She will keep me in check, she will be honest. She's that person who will tell you the truth no matter what, but always in a kind, constructive way. She's younger, but she's almost like the little big sister, and I would say that that happened during chemo.
21:02 Jordan: I feel, really, like I've had such a fulfilled life. I'm really lucky. My life has been really amazing. If anything, I get frustrated for Jessica because I have had it so easy.
21:22 Allison: On the other end of the spectrum, she was almost a caretaker as well. "Did you take your medicine, Jessica?" "Hey, do you wanna wear this hat today?" She owned it, too. And I'm telling you, she was seven years old, but she owned it, too. And in a very weird way, their childhood stopped, but it didn't... It just became something else. It wasn't, "Hey, let's play with dolls," anymore. It was completely different. But the hospital allowed them to still be kids, but together.
21:58 Jordan: I would definitely say that we complete each other. I 100% know that I was supposed to be her sibling.
22:07 Allison: Jessica and Jordan and I, early in this process, were laying in the bed one night, and Jordan was seven, seven years old. Think about it. At seven years old, what do you understand about the process of life and death? Not a lot. Never knew... That she had never experienced it, that no one in our family had died. And so she said, "Mom," we're laying there, "How do you know she's not gonna die?"
22:34 Jordan: I'm sure her thoughts were so in a million places at that point, but I just so deeply regretted it once I asked it. But it was obviously because I was so scared and I just did not wanna lose her. I just remember my mom saying, "The doctors are gonna do everything that they can to take care of her."
22:54 Allison: And I said, "Well, honey, I don't know that, but I have faith that she will not, I have faith that they know what they're doing, that the medicine's gonna work."
23:06 Jordan: I think my mom did her best to comfort us and tell us that she was in really good hands at St. Jude and that her doctors were gonna take care of her. So from there, I would say that's, again, a blur. I just remember that specific moment being something I deeply regretted.
23:27 Jessica: Even though we could see the light at the end of the tunnel, I remember sitting in that room, really, if I'm being honest with a Bible, and thinking, "I can't do this any longer. I don't know how I can go on." So there were definite moments where I felt like, "This is really hard." It wasn't always an easy-breezy journey, which is how I like to remember it in my head. And I also feel like your mind does this thing where it helps you cope and you really block out the bad days. And so it's easy for me to recall the beautiful days at St. Jude, but it's a lot harder for me to dig up these darker moments.
24:17 Narrator: Up next.
24:20 Jessica: That was the day we had been looking forward to for years, and that was the first day of spring, and that was my last day at Chemo.
24:31 Narrator: 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.