Theo Tittle grew up knowing his dad wasn’t like everyone else.
It wasn’t just that he was a “super irreverent” guy who embraced and loved everyone, especially those with a “weirdness factor,” but because he had a rare genetic form of kidney cancer called hereditary leiomyomatosis renal cell cancer, or HLRCC.
People who are diagnosed with HLRCC are at an increased risk of developing kidney cancer, particularly a form known as type II papillary renal cell carcinoma.
From the time Theo was 1 year old, his dad, Bently, underwent three major surgeries, radiation and chemotherapy, and was part of a clinical trial at the National Institutes of Health. Yet, it seemed like he would always find a way to recover from the harsh treatments.
“For all those years living with cancer, dad was the poster child for HLRCC,” said Theo. “His case helped the clinical trial team understand the disease better. Dad also talked with many people about living with cancer and HLRCC. He always made people feel better.”
In 2013, Theo’s dad had another recurrence. But this time, he didn’t recover. In February 2014, a week after celebrating Theo’s 12th birthday, his dad died.
“Even though I went to a lot of chemo sessions and I was there for it all, I never thought he would actually die from it because he always recovered,” said Theo, who is now 16 years old. “Stuff would flare up, but it never stopped him from surfing, painting, making films, teaching and just being his usual funny self."
“He was an awesome dad. And my best friend.”
Theo soon joined the estimated 1.5 million children in the United States to lose one or both parents by the age of 15.
“Losing my dad was the biggest loss in the world. It’s a really hard thing for anyone to go through, but especially for a kid.”
With support from his mother, family, friends and psycho-social professionals at the Simms/Mann-UCLA Center for Integrative Oncology who specialize in helping families cope with the challenges of cancer, Theo has been able to get through such a difficult time in his life. He’s now a sophomore in high school and wants to help support other kids who are going through the difficult experience of losing a parent to cancer.
Here Theo shares advice on what helped him and how he coped (and still is coping) with the death of a parent from cancer.
It’s okay to not be okay
“About a month after my dad died, I remember working on a project in school about connecting words to images, so I wrote, ‘happier than the happiest rainbow,’ which is just the opposite of how I was really feeling,” said Theo. “But I did that because I felt the need to show everyone that I was okay because people around me were wanting me to be okay. But when you lose a parent, it’s okay to not be okay.”
There isn’t a “normal” way to cope with death
There’s no playbook for this type of thing and everyone manages their grief differently, but don’t ever think a child is not feeling what’s happening, said Theo.
“There's no feeling you're supposed to feel. Some people think you should be crying every day and every minute and you should be really sad all the time. Yes, you're sad, but you'll still feel other things. You can still have fun with your friends and go out and play. You just have to do what’s right for you.”
Don’t bottle up your feelings, just keep letting it out
“I did let it bottle up and when that happened, there were days where everything was hard and I just couldn't do it,” remembers Theo. “Little things would tick me off, and it became kind of like a metaphorical cup that just kept filling up and then it all came pouring out. You can't do that. It's just not healthy. It’s okay to have those dark moments, you don’t need to hide them.”
Things don’t necessarily get better, but it does get easier
“After a while, you feel different and things begin to normal out. You still have those intense feelings and every now and then, you'll feel them again, but they've gotten smaller because you are moving on in your life. Your loss is still there, and you’ll still miss that person insanely. Your life may become more normal over time, but it won't ever be the same. And that’s OK, too.”
For family members and others: Sometimes you don’t need to talk. Just being there is enough
“I remember the night before my dad’s memorial, and my mom and I just kind of laid on the bed together. We were sitting there and she was just like this calm presence, and I felt like I had somebody there for me. She didn't need something from me. She didn't need me to outpour or to give her my feelings. We didn’t need to talk. She was there to just be with me.”
Don’t compare losses
“I know people are trying to be comforting by saying something like, ‘I totally understand what you're going through. My great, great, great, great grandpa died last year.’ But no loss is equal, and we shouldn’t try to compare them,” Theo said.
“Something I really liked hearing was, ‘I can't relate to this. I don't understand. I've never been through anything like that. But I’m here for you.’ Just disconnecting it almost. I know that's kind of a weird thing to say, but keeping it separate is a really nice thing. I loved when somebody said that; that was like the best thing to hear for me.”
It’s not possible to forget
“People say I look like my dad. It sometimes makes me uncomfortable because they’re emotional about it. But I take it as a compliment. For them, they see me and feel like my dad is there.
“And at first, I was scared that as I started to feel better I might forget about him. But that’s impossible. I think about my dad in a million little ways every single day. Sometimes it’s funny — like seeing some goofy person that Dad would have liked. Other times I really miss him, like when I’m around other kids with their dads. And then there’s times when I’m in a situation, and I think ‘What would Dad do?’ And I get an answer really fast. It’s like he’s here with me.”
If you or your loved one is receiving oncology care at UCLA and would like to connect with the resources of the Simms/Mann-UCLA Center for Integrative Oncology for support, you may do so by emailing SimmsMannCenter@mednet.ucla.edu or calling the Center’s main line at 310 794-6644. The Simms Mann Center is located at 200 Medical Plaza Suite 502 Los Angeles, CA 90095.
By Denise Heady, 2018