The Children’s Tumor Foundation had a conversation with NF Hero Kiley, and her mother, Jessica, whom both live with NF1. Kiley and her mother are NF advocates and have had a long journey with NF. Below is a transcript of part of our conversation.
CTF: Hi, Kiley, how old are you?
Kiley: 11.
CTF: What grade are you in?
Kiley: Fifth.
CTF: And how’s school going for you this year?
Kiley: It’s amazing.
Jessica: Yeah. It is. I’m a teacher there. I teach lower elementary, and her classroom actually… We have an adjoining door. Her
classroom adjoins my classroom.
CTF: That’s so nice. You get to see each other during the day.
Kiley: Yes.
Jessica: My son, Ryan, also has NF. So the three of us all have it.
CTF: Kiley, do you have any other siblings? Or is it just Kiley and Ryan?
Kiley: I have animal siblings.
CTF: Who are your animal siblings? Tell me about them.
Kiley: One is named Fluffy. I can get him.
Jessica: Tell her what Fluffy is.
Kiley: A bunny. One is Lulu. It’s a bird. Another one’s named Gizmo from Gremlins. He’s a hamster. And then Copper is our dog.
CTF: Wow. So you have four pets?
Jessica: Four!
Kiley: Four.
CTF: Are you going to be a veterinarian when you grow up, Kiley?
Kiley: I don’t know. I want to be some sort of doctor.
Jessica: She has decided that since she was about two years old. Right?
Kiley: Yeah. Because that makes the most money.
CTF: Awesome. So, Jessica, because you have NF, you mentioned earlier that you were watching your children very closely for NF?
Jessica: Yes, I knew it was a 50/50 chance my daughter would have NF since I have it and my mom had it. A few weeks after Kiley was born she developed a HUGE birthmark that started on her stomach and wrapped around her back. I made an appointment with a pediatric neurologist right then, who confirmed.
CTF: Kiley, how has NF affected you?
Kiley: When I was on the chemo, it made my throat hurt, and my stomach hurt, and sometimes it made my head hurt.
Jessica: The future is a little nerve-wracking. She is currently on MEK so we are praying it shrinks her tumor. (to Kiley) And your hair, tell what happened to your hair?
Kiley: It got blonde.
Jessica: Her hair got extremely, extremely blonde on the MEK. Other parents would even ask me, “Where did you get her hair done? Because that’s the shade I want. Look at all these colors.”
CTF: You said before that you have really great care where you live. Has that always been the case?
Jessica: No. With me, I was made a spectacle a lot because I grew up in a small mountain town. I would have doctors tell me, “I got to Google it.” Or be like, “You have NF,” and then parade all of their interns through the room to look at me. And I’m like, “I’m a unicorn. Okay. What can I do? I’ll take one for the team. Ask me questions. Probe me. Prod me. If this is for the greater good.”
With Kiley, we got very lucky and had a lot of extremely knowledgeable doctors. The only time I had to fight for her, and I mean fight for her, is when I discovered her tumor.
CTF: Can you tell me about that?
Jessica: I discovered her tumor probably two, or three o’clock in the morning when I was rubbing her back to sleep when she was around two years old. I was pregnant with my son. And I felt it, and I knew because her tumor is in her parotid gland (the salivary glands that sit in front of the ears). I was like, “Game over. I know what’s going on. Now we have to fight.”
She had an inoperable parotid gland tumor. And after about a couple months, nothing was changing. The tubes didn’t work, removal didn’t work, and her ear would start to ooze.
So I remember taking her to the hospital and crying. And I’m like, “I know there’s something desperately wrong. I can feel it. I know NF. I know what I’m dealing with.” And the nurse literally just looked at me, and she’s like, “You need to get a hobby.” And I’m like, “No, I know there’s something wrong.”
I said to our ER doctor, “I think she has a neurofibroma.” And he tells me it’s really unheard of to have a neurofibroma in that location. But let’s run some tests.
So after the tests, we went back to our ENT (Ear, Nose and Throat doctor), and they said, nothing’s wrong. Nothing’s wrong!? And I’m like, “Look again. Look at the first MRI again, from two years ago.” And he looked at me and said, “You’d better go to neurology.” I walked up to neuro, and I just told them I wasn’t leaving without a prescription for an MRI. They told me the doctor wasn’t in and to pretty much to leave. And I told them to call security. “I’m sitting right here until you give it to me.” So, they did. They gave us that prescription for the MRI, and that’s when we confirmed her tumor.
CTF: And how’s Kiley doing right now?
Jessica: She’s doing great. She’s been off of (MEK) for a little more than a month.
CTF: Kiley, aside from your brother, have you met other kids that have NF?
Kiley: Kind of.
Jessica: I met a mom on an NF mom group, NF Moms Rock. And her daughter is older. But has the same type of tumor. They chatted a little bit on Kids’ Messenger and TikTok.
CTF: Have you had any surgeries?
Kiley: Tube surgeries.
Jessica: She’s had to have… The tumor is in her parotid, and it got so heavy it completely collapsed her ear canal. So, she’s had tube surgeries. I’ve lost count at five or six. She is reading delayed due to the fact she does not hear very well out of her left ear and she has phonetical awareness issues. There’s a little otoscope thing that it connects to our phone so that we can see what’s going on.
Kiley: But I’m getting another surgery that they’re going to take out the tube, and they’re going to flip the cartilage.
Jessica: They have to rebuild her ear canal. So they’re going to flip the cartilage in her ear and rebuild her ear canal.
Kiley: They may also take my tonsils out while they’re doing that.
CTF: How do you feel about missing your tonsils?
Kiley: Strawberry ice cream.
CTF: I knew that’s what’d you’d say. (laughing) Do you have to miss a lot of school from going to doctor’s appointments?
Kiley: No.
Jessica: I think having her in an all-inclusive Montessori school helps. I work there and have for 5 years and when I say there is NO bullying in Lower Elementary, THERE IS NO BULLYING. We have children from all walks of life and everyone practices acceptance.
CTF: And Kiley, do you find yourself having to tell your teachers and friends at school what NF is?
Kiley: Yeah. I did a presentation about it this year.
CTF: Tell me what you did. Did you make anything to show? Or did you just talk? Or what happened?
Kiley: I did a slideshow, and I showed when I was two, I think to when I went fishing, and I caught a puffer fish. And I showed what my MRI machine looks like, and then I showed that I made a cover of the newspaper. And I think that’s all I showed.
CTF: I would’ve loved to see it. That’s really great. And did your friends have lots of questions about it?
Kiley: People had questions.
Jessica: A lot of the kids in my class knew what was going on. We do a lot of sign language. So we have to use their classrooms to use the bathroom. They would ask her if she’s okay, and she would tell them if something was wrong. They would come to me like, “Miss Jessica, Kiley said her throat hurts. Can I go give her a cough drop?” And they would go and give her a cough drop, or give her water or something.
CTF: Sounds like you have worked hard to get some good support in place and a really great community.
Kiley: Now I’m learning karate.
CTF: How long have you been doing that?
Jessica: (laughing) One day.
Kiley: One day.
Jessica: She gets her uniform tonight.
CTF: Got it! Are you going to keep working on it until you have all the belts?
Kiley: Yeah.
CTF: Jessica, is there anything else you’d like to share with us about your journey with Kiley?
Jessica: Our faith in God is also Kiley’s biggest strength. She was taught from birth that everyone on Earth has something special that makes them different, no one is “ugly”. When she was two, she started speech where she met children with different aliments, deaf, some with cochlear implants and she tried to befriend everyone.
