Kenna Stuck

Documenting Her Story: Kenna's Rebirth

Photos by Tom Seawell.

Kenna Stuck was a typical teenager. She hung out with her friends, talked on the phone and teased her little sister. But she was unusual in that, at age 13, she found out she had ulcerative colitis, a potentially life-threatening disease that attacks the lining of the colon. She missed a lot of school because of symptoms like painful cramping, bloating and nausea. Health challenges are tough for any kid, but Kenna got a double dose. Just a few years later, at age 16, she was diagnosed with cancer.

Kenna made a video diary about her bone marrow transplant at UCSF with the help of BayKids, a San Francisco-based non-profit that empowers kids who face serious medical challenges to express themselves through filmmaking. You can watch Kenna's video here. Kenna's video recently won best youth documentary in the senior division at the CineYouth Festival and will be shown at the Chicago International Film Festival in October.

Her video will also be featured at the BayKids Film Festival on June 2.

Tell me a little bit about your life before you got sick?

I was a freshman in high school. I didn't know any kids at my new school, so I was trying to fit in and make friends. Overall, I was a pretty normal kid, except that I had ulcerative colitis, a disease that causes ulcers inside the colon. When the doctors did a colonoscopy, they discovered that 50 percent of my colon was lined with ulcers. The disease runs in my family. My mom has it and my great grandmother died from it.

In October 2010, I had a huge ulcerative colitis attack. The pain was unbearable. I called my mom at work and told her that on a scale of 1 to 10 the pain was a 10. She rushed me to the emergency room. I was admitted to the hospital and stayed for a week. That was the start of a two-year-long battle with ulcerative colitis. Finally, I had my colon removed in January 2011. But I had a lot of complications. I was in and out of the hospital multiple times, I had emergency surgery and my incision wouldn’t heal. On top of that, some of the drugs I was taking for ulcerative colitis cause cancer in a minority of people.

What happened next?

One day some suspicious cells showed up in my blood work. The doctors did a bone marrow biopsy and discovered that I had AML (leukemia) and MDS (myelodysplastic syndrome — two conditions that involve cancer of the blood and bone marrow).

What was your reaction to the cancer diagnosis?

I thought "What! Are you kidding me? After everything I've been through, now I have cancer?!" But I quickly decided I had to fight it.

Was a bone marrow transplant (BMT) the only option?

Yes. They told me I first needed chemo to put the leukemia in remission and then I'd need a bone marrow transplant. So, I went through two rounds of chemo for the leukemia. Because of the type of leukemia I had I couldn't go to a clinic and get a dose of chemo and go home. People with AML have to stay in the hospital for 30 days with each round. When that was finished and my leukemia went into remission, I had a third round of chemo, which was a really high dose, to prepare my body for the bone marrow transplant. After the bone marrow transplant I was in isolation for seven weeks, meaning I couldn't leave my room at all.

How did you cope?

I listened to music and worked on the video. Quite honestly, I just wanted to get home. I am a very determined person. I was too sassy to die. I didn't want to die. I didn't want to say goodbye to everyone I loved. I knew I needed to do whatever it would take to get me out of there.

Your sister is your only sibling. Are you two close?

Yes, she's the youngest and I'm the oldest. I'm two years older. Yeah, we are very close. We fight, naturally, we are sisters after all, but after we fight we say we love each other. We kiss each other goodnight every night. We talk to each other about stuff we can't tell anyone else. That'll never change.

She wasn't a genetic match for your bone marrow transplant. Was that difficult?

When she found out she wasn't a match, she was devastated. She wanted to be the one to save my life, but now I'm kind of glad she didn't have to go through what my donor went through. There are a lot of shots involved and she doesn't like needles.

How did you find your donor?

UCSF found him for me through a worldwide donor registry. They found a dozen potential matches. To give bone marrow, a potential donor needs to match 10 out of 12 markers. A man in Australia met all 12 of my markers, so he's pretty much my identical twin (laughs). I hope I get to meet him someday. I'd love to tell him how thankful I am. He saved my life. He is my hero. To give someone else a second chance is the most selfless thing in the world.

So, do you have an Australian accent now?

The morning after my transplant, I woke up and said "g-day mate" to my nurse just to make her laugh, but, no, I'm sad to say I don't have an Australian accent. But my sister and I are working on it.

What was the hardest part of the transplant?

Afterward, ulcers covered the inside of my mouth and ran down my throat. That was the worst part. I couldn't eat, drink, or talk for weeks. A bone marrow transplant kicks your butt.

For your video, you filmed a scene where your ulcers were so bad you couldn't talk so you interviewed your dad by writing questions on a dry-erase board. Your dad was tearing up. Was that difficult to see?

Sure, it was hard to see my parents cry, but at the same time I knew that they need to cry. Just like me, they had to get their feelings out. If they held all those feelings in they would explode.

Did you cry?

Yes, I cried a lot! I thought "what if" and "what if I'm being too cocky and I don't make it out?" There were so many times that I cried to my mom and told her it was just too hard. You gotta let it out.

Describe your experience at UCSF.

The nurses are fantastic. One nurse even sang to me as I got chemo. The hospital has good food (and I've eaten at a lot of hospitals) and great doctors. I can't thank them enough. They saved my life.

How are you doing?

It's been nine months since my bone marrow transplant. I'm okay. I just went to my senior prom and the UCSF hospital prom. I brought my best girlfriends to the UCSF prom and a good guy friend to my senior prom. I had a great time at both of the proms. My friends have been so amazing and supportive that I wanted to share a special moment with them. I'm looking forward to June when I'll graduate from high school with my class and turn 18.

You lost your hair during chemo. How's the situation now?

Oh my gosh, I have the dreaded chemo perm. My hair used to be blonde and straight and it grew in completely dark and curly beyond curly, some parts are long, some are short. Yep, it's weird but at least I have hair!

What kind of side effects (if any) do you have now?

I still have some mouth sores. I'm hoping they go away soon. I'm getting stronger. I'm able to walk farther. I mostly do what teenagers do. I hang out with my friends as much as possible. All my friends can drive, so I make them take me places. Getting my driver's license is definitely on my to-do list.

How has this experienced changed you?

I'm older than my years. I don't consider myself a teenager anymore. I didn't have time to be a teenager. Being sick made me stronger, more compassionate and more understanding of the hard things people go through in life. For example, I was at a friend's house and someone made fun of a bald kid they saw, and I said, "guys, what if that kid has cancer?" That shut them up pretty fast. "Score one for Kenna!"

Why did you choose to make a video about your experience?

I've always wanted to encourage people. I think this is my way to help other people realize that they aren't doomed just because they have cancer. I wanted to show people that a bone marrow transplant isn't easy but, if I can do it, so can you. I hope my story will inspire people to keep fighting.

What was the filming process like?

It was easy. Jade at BayKids was amazing. She came every other Friday and filmed me while I was in isolation. There were days when it was hard because I felt so sick. But I kept at it because I wanted my story to be told. Jade's encouragement was very important to me.

"Kenna's Rebirth"

Kenna's video, made in the hospital with the help of the BayKids MovieMakers program, won best youth documentary in the senior division at the CineYouth Festival in 2013.

Did it help to have a creative project to work on while in the hospital?

Definitely. It helped me focus on something other than the pain and discomfort of the bone marrow transplant. I looked forward to those Friday visits.

What's it like to have people respond so favorably to your video?

I never thought in a million years that my video would get so much attention. I thought only my family and friends would see it. It feels good knowing I accomplished something big.

What's your advice for other young people facing BMT?

I would tell them to just survive, fight it, take it one day at a time. It will get better. Stay focused on why you are fighting in the first place and have faith that you will make it through. Living is the only option.

What do you want out of life?

I want to give back and be a role model. My ultimate dream is to be a child-life specialist, which is someone who works in hospitals and visits sick kids. I want kids with cancer to realize that it will get better.

May 2013

Interviewed by freelance writer Catherine Guthrie.

Related Information

UCSF Clinics & Centers

Blood & Marrow Transplant

Blood & Marrow Transplant Clinic
1825 Fourth St., Sixth Floor
San Francisco, CA 94158
Phone: (415) 353-2986
Fax: (415) 502-4867

Blood and Marrow Transplant Program
1975 Fourth St., Sixth Floor
San Francisco, CA 94158
Phone: (415) 476-2188
Fax: (415) 502-4867

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