Episode 2 of 6
“Sometimes I had to go into the back yard and scream.”
When your little girl is this sick, you don’t let your fear or worry show. Jessica’s mom says it over and over – she bottled up her emotions during her daughter’s low points. But those emotions pour out for the first time in this episode as the family retraces its steps to St. Jude.
00:00 Steve: Yeah. When... I remember when everything was really happening, it was about 1997 was when Jessica was diagnosed. I was there and to tell her... And it was really dramatic. I still remember her aunt Lindy was there, and I was there, her mom and we had sat her down in the living room and told her. And of course it was... She was devastated.
00:44 Narrator: Jessica was diagnosed with acute lymphoblastic leukemia at age 9, but it would take weeks and months of local doctor visits and countless tests before she would hear the words, "You have cancer." This is St. Jude Flashpoint.
01:05 Jessica: You know, they had thrown the word cancer around lightly like, "Oh, it could be cancer, but that's... What you have, this blood marker that you're showing it, that would be so rare." Till to this day, I remember even them throwing that in and having this gut feeling that maybe that's what we were talking about.
01:27 Steve: When as Jessica was beginning, some of her symptoms were happening, she had lots of bad nights. Her fever was getting really, really bad and this is pre-diagnosis. And she was in the emergency room probably about 1 o'clock in the morning, and I remember walking out. I remember seeing a St. Jude specials that was actually playing as I walked out. There was only one man watching this TV, and as we walked out, as I walked out of the doors, the double doors opened up. And I kinda looked from behind me and there was this man staring and he was watching the... The story, the St. Jude stories.
02:19 Jordan: I remember how serious it was when Jessica was first sick and how badly she felt, how worried everyone around me was, and our father had had cancer. So the word was present in our family and so it was really scary for all of us at first.
02:42 Steve: As she got weaker and like I said, it didn't really... It was not even official diagnosis yet. She said something to me and I still remember it. She said, "My eyes are so dark. I feel like I need makeup underneath my eyes." And I remember saying that exact thing when I was getting really sick. I'd stare in the mirror, you know, this is before you knew what was wrong with you, but you stared in the mirror and you stand there and you just feel like I'm losing the life out of my face anyway. And then when she said that to me, it kinda gave me just... It was a kind of a major skin crawl then scary.
03:36 Jessica: I had simple things like a neck ache and night sweats and fever, and that could have been meningitis or a parasite because we'd just gotten back from the beach.
03:51 Allison: Oh, she has a parasite... No, she doesn't. She does not have a parasite. You're not listening to me. And that's one of the most frustrating things for me as the mother was. I could tell you these things you're telling me she should be feeling, she's not feeling that. There's nothing wrong with her stomach. She cannot stay awake. She's exhausted.
04:16 Jessica: There were a lot of... There was a lot of blood work. There was a lot of blood tests. There was a lot of searching many weeks.
04:27 Allison: It took like 22 different sets of blood work. We had to take like... We had to spend like six weekends collecting stool samples over the weekend and no answers. It took almost three months to finally figure out what in the world this was.
04:45 Jessica: We just kept searching and searching, and eventually, I had this marker that is called an eosinophil. And it normally points to an allergic reaction and it was sky high, the highest that my pediatrician had ever seen it. So that's why they were so confused about what was going on.
05:03 Allison: And the reason that they thought that she had a parasite was because usually when you have that many eosinophils, you've either had some sort of an anaphylactic shock reaction, like you are allergic to shrimp and you ate a lot and your face swelled, or you have a parasite, but usually, you've been in a third world country. We had none of that. None of that. I was just literally terrified. They had called... She had felt on a Sunday, that's a terrible day to go to any ER. She had a stiff neck and a headache and she was... I think she might have even thrown up and those are all signs of meningitis. So they called us to come into the HMO to have these blood tests. We were sitting in a waiting room waiting to have blood test number 27 or something, and I was so scared being sent there. I was so scared we were going to a hematologist that I literally could not remember the words to the Lord's Prayer.
06:09 Jessica: We couldn't figure out where we were going to land.
06:12 Allison: And then they called us back at like 10 o'clock at night on a Sunday. That never happens. That didn't happen and she said, "Look, there's something crazy wrong with your daughter's blood. She needs some more extensive blood work."
06:27 Jessica: I was sent to the local Children's Hospital to have a bone marrow biopsy.
06:33 Allison: Gosh, this is something I repress. This is a memory that I repress. I'm real good at repressing this in a box. And so it does get kind of raw.
06:43 Jessica: We started actually... Let me correct myself. It was a bone marrow aspiration at first. And at the local Children's Hospital, they said that it would happen so quickly that they didn't need to use full anesthesia.
06:56 Allison: This kid's afraid. She's afraid of that giant needle you're bringing at her. She'd never seen anything like that before.
07:02 Jessica: It was going to be a really quick procedure, and it was gonna be over before I knew it. And they would use some twilight medicine and it would be fine.
07:11 Allison: Literally, the worst thing as a parent that I've ever experienced, maybe as a human, I had to hold her down on the table while they did an unsedated bone biopsy.
07:21 Jessica: I was doing math problems the entire time, totally aware and could feel everything. And I just remember screaming and begging my mom, "Please make this stop. Why are you letting them do this to me?"
07:34 Allison: And it was horrible. It was horrible.
07:37 Jessica: Mom was trying to help me, "We have to figure out what's wrong with you." And I could tell it was equally as painful for her.
07:53 Allison: And so the next day, I believe it was the next day, he made us come back. And this time, her bone marrow was so packed with this eosinophil sort of a baby baby blood cell. It was almost like brown sugar. And so he would pull back on that syringe and it would go like... You know, and nothing would come. It's like... I'm looking at it. I'm not a nurse or a doctor, and I'm like, "What is that?" And so I could tell something was really bad wrong at that point.
08:22 Jessica: Well, it didn't just happen. It was eight weeks of searching before I was finally told.
08:29 Allison: This is one of the most terrifying mother moments I've ever had to. I had to meet my husband at home and we had to tell her, "Honey, they think you've got leukemia." She didn't know what that meant. What you're... She's 9 years old, and they sent us the next day. In fact, I went to school. They didn't send us the next day. I went to school the next day, and my principal... Assistant principal calls me into his office. "You have a phone call. I want you to sit down." And he could tell who I was talking to, and he's like, "We're gonna send you to St. Jude. There's something really wrong. We think she might have leukemia, and so we need you to go to St. Jude this afternoon." And so my principal's like, "You're leaving. Go get your stuff." I'm like, "But what about my lesson plan?" "No, we'll take care of this. You're leaving, but I want you to call your husband first. Sit down. Call your husband. Have him meet you at home." And so she was at home because she at this point could only stay awake like two hours a day. So we had to go home. She was staying... My cousin was there and she was staying with my cousin, and my cousin is in a puddle in the corner 'cause my cousin's got such a big heart. And my cousin is sobbing and I'm like, "I'm not gonna, I'm not gonna." 'Cause Jessica and I have a very strange, kind of a symbiotic relationship. If I'm a mess, she's a mess. And if mom has freaked out, I should be freaked out, so I couldn't. I couldn't. I had to be strong. You asked me where I got that from. I had to be strong because I had to get her through it.
10:17 Steve: And she kind of sat down to the floor. She was sitting in front on this couch and she was kinda sat down on the floor. And I still remember her... I still remember her asking, "What did I do to deserve this?"
10:32 Jessica: I'm very interested to see how my mom talks about this journey because I think she tends to not really show that to us. And we haven't... I actually would be very... I should ask my mom a lot of questions about how she felt and what she experienced because she's always been so strong, and I think she would have internalized a lot of the emotion and how scared she was. Some of it, you can just read on people's faces, but she really kept a lot of it to herself.
11:10 Allison: Now, my momma, hot mess, my cousin, crying in the corner. But I just couldn't do it. Now, there were times I'd go out in the backyard and scream, but she didn't hear it 'cause I had to get... I had to... Every now and then, I'd be driving down the road and my face would water. I'd just... I wasn't trying to cry, but you can only keep so much inside of it, I guess. When we did finally like two days later when they did send us to St. Jude, I was thrilled because I knew they would... They'd figure it out.
11:45 Narrator: Up next, Jessica arrives at St. Jude for life-saving treatment.
11:49 Jessica: And I woke up and mom was crying happy tears. Like we could feel that this was a place unlike anywhere we'd been before or any of the other hospitals that we'd step foot in.
12:02 Narrator: Rate, review and share St. Jude Flashpoint on Apple Podcasts or your favorite podcast app. Learn more, donate or volunteer at stjude.org. Finding cures. Saving children.