Hana & Karli

This is a two-part interview with Hana and her mom, Karli. Most "I" statements are being told by Hana, who was diagnosed with a brain tumor.

"We first thought Hana should have an MRI because of some neurological problems, but those were genetic and we already knew a little bit about them. When the results came back, that's we knew that it was more than that"

"Once she recovered, we came home and from there it was quite a process. The doctors wanted to keep an eye on it to see if she needed chemo. The tumor grows slowly so it takes a while to see what’s really going on. We continued to monitor it until she started having really bad balance. She ended up having a severe fall in school, and that’s when we decided to start chemo after school was let out."

"When I was in the hospital, I threw up every day for 8 days. I was admitted to the hospital on a Friday and I had brain surgery on Monday. I have a scar from it on my head. It’s a really hard recovery process from brain surgery. My hair got stuck in my scar"

"The day after school I got my port installed, and every Friday after that I went through chemo. The port wasn’t the worst part. When they put it in it just felt like someone was pressing on me. Chemo was pretty bad. Especially when they were flushing me with salt water. It was disgusting"

"Feeding tube. I hate the feeding tube the most. It was the worst part of this entire thing. I’ve been dealing with PTSD from the feeding tube and the step ladder I used to reach it, which is really difficult. Sometimes the tube would get pulled out of me… it was just a scary procedure"

"There was one time when they put it in, and while they were hooking me up it got a little kinked and they had to pull it out. They would try putting it in and out of me. I stayed there for two hours before my mom and I just left. It was scratching on my throat and it was bleeding, and I was freaking out. I just remember it being pulled out of me, sometimes even by my cat"

"When I got the feeding tube put in, I would do a little self talk. I’d remind myself that tomorrow has to come. It’s how I tried to cope with the whole process of using a feeding tube. I also had a counselor that helped me work through it"

"I was allergic to one of the chemo medicines. I remember my tongue was buzzing, so were my lips. And I was so shaky I couldn’t walk. That’s when we decided to stop chemotherapy. It was called an anaphylactic reaction, which turn out is common."

"After the allergic reaction, they actually wanted to give me the same drug again because it was just so important. I would go there knowing I was getting a drug that would make me stop breathing. What they did was give me a drug to counteract the reaction, and then give me a tiny drop of the chemo drug. Then they would repeat that over and over again. Sometimes I spent 13 hours just getting pumped full of drugs, with teams standing by ready to revive me. I did that 7 times"

"I still have trouble eating. I’m actually seeing an eating therapist. For so many months, it was a struggle just to eat and stay at a healthy weight. Before the feeding tube, I could eat so much ice cream and have so many cookies. Now I can’t eat those. My mom tried letting me eat whatever I want, but even that caused anxiety"

"It’s hard when you’re on treatment and in school. The other kids were mostly good. One of my second grade friends told people about my cancer, and I heard them talking about me not very nicely"

"The kind of cancer she has is never done. It will stay there forever, it’s just non removable. With the kids who have these low-grade brain tumors, they have to monitor it and go through treatment for the rest of their lives. There’s always monitoring. There’s always wondering what’s going to happen next. That to me is the biggest change in our lives. The anxiety over eating, the nausea, the chronic fatigue and sleep issues. These things might never go away for my daughter"

"One thing Hana does to cope is figure out what she can and can’t control. She might not be able to control going to chemo, but she can count off the nurses and decide when she will be injected. It’s the feeling of all these things being done without permission that's hard for kids. So any time you can ask them things like what stuffed animal do you want to bring, or do you want me to hold your hand, it empowers their sense of control"

"Her recovery right after surgery was scary. She had no emotion on her face. I mean it took time for her brain to literally wake up and send signals. She couldn’t walk either. She had steroids too, which made her angry and hungry"

"A big thing is accepting help and giving yourself some grace. That was an important part of my coping process. I had one friend who actually sent a house cleaner to tidy my house while we were at chemo."

"I had another friend who gathered goodie bags for Hana while she was in treatment. One time she actually came to chemo to support Hana. I mean everyone was supportive. Knitting hats when she lost her hair, donating things... it was wonderful"

"She missed so much school throughout this. That’s one of the reasons we are homeschooling her. With the chronic fatigue and the constant interruptions, homeschooling is a much better fit for her. And it turns out I love doing it"

"I'm just taking it one day at a time, one step at a time. I don't fall into the trap of constantly worrying, and I allow myself some grace when I need it. That's how I keep going" (Kelly)