Twenty Years Later: A Sisterhood of Survivors Discusses Life After Cancer

By Melanie Robins, The Seany Foundation

“Friendship…is born at the moment when one man says to another, ‘What! You too? I thought that no one but myself…’”

-C.S. Lewis, The Four Loves

VOL Tracie, Chante, Megan, Catherine, Keri, Ashley, Lori, VOL Angie,

Ashley Ross, VOL Marilee (up top) Tiana, Briten

When Lori (Vick) Jolliffe and Megan (Hickey) Barbosa met at Camp Reach for the Sky’s Day Camp in 1993, they had no idea how aligned their lives would be over the next two decades. Both had been diagnosed as toddlers with rhabdomyosarcoma, a form of childhood cancer that affects connective tissue, soft tissue, and bone. As a result, they underwent similar treatment regimens, including radiation, chemotherapy, and surgeries to remove the bladder and reproductive system and create a stoma (opening) in the abdomen through which urine could drain into an ostomy bag. They would both go on as preteens to have surgeries to build a new bladder using a portion of the intestinal tract, eventually allowing them to shed their cumbersome ostomy bags and void (urinate) in a more natural way using a catheter. Today, Lori and Megan say they even get bowel obstructions (a common side effect of bladder reconstruction) around the same time.

Now in their early thirties, Megan and Lori look back and feel a deep sense of gratitude for their friendship and the memories and bonds they made at Camp Reach for the Sky. Every summer, they would reunite with each other and their strong network of friends, in particular Briten Douglas, Tiana LaCerva, Ashley Ross, and Chante Gonzalez Vido. More than just a fun break from home, school, and the hospital, Lori credits the program with supplying her with relationships that have changed her life forever. “One of the main factors why I became the person I am is from having that connection with those girls, and specifically Megan.”

Megan shares this sentiment and gives an example of how something as seemingly minor as witnessing Lori’s confidence with her ostomy bag helped quell some of her own anxieties: “I was always freaking out about the bag; I didn’t want people to know and to be treated differently. Lori would just rock it and have it hang out of her bathing suit like it’s no big deal.” As an adult, Megan fully appreciates the significance of these kinds of moments. “Our lives would have been very different without having each other to go through and troubleshoot our entire childhood.”

Like Lori and Megan, Briten took comfort in her friends and their shared experience because she too had bladder issues, although not from her cancer diagnosis of acute lymphocytic leukemia at age four. Rather, Briten was born with a congenital condition called bladder exstrophy, which is the incomplete formation of the pelvis and bladder in utero. Until she met Megan and Lori at Camp, she didn’t know anyone else who had medical problems like hers. She considered her Camp friends a lifeline because they were all going through similar challenges. “It was really nice to be able to go to Camp and have this openness with everybody to talk about our problems.” Today, Briten says Lori and Megan are still her closest confidents when it comes to health issues. “I have no other network who deals with kidney infections, bladder infections, and catheterizations.”

But for Briten, her Camp friends were more than just peers to talk to about her medical problems. They served as a shield against the terrible time she was having at school, where kids would treat her differently or even tease her for having had cancer. She recalls a memory from sixth grade when she had finally gained some confidence and began dressing up and doing her long hair before school each day. Throughout the year kids would randomly come up to her and pull her hair. Briten could not figure out what they were doing and brushed it off as some sort of silly game boys play. It wasn’t until a girl she had befriended on a class trip asked her if she had hair implants “because she had cancer.” Apparently the entire school believed Briten’s hair was fake from a cancer diagnosis she had had when she was four. She was stunned and couldn’t believe people were still talking about her diagnosis as a small child. Unfortunately, the issue followed her into middle school, despite being introduced to new kids from different grammar schools.

Briten shares the moment, while at Camp Reach for the Sky, when her entire world opened up: “I remember thinking, ‘I do have friends! People do like me! And they aren’t scared of me.’” It was so nice since nobody at school wanted to be friends because of cancer, says Briten. At Camp, she says she made friends immediately, and the only thing she didn’t like about it was that it only lasted a week.

Because Tiana was homeschooled during her illness (T-cell lymphoma), which spanned from six to ten years old, she says she fell behind both academically and socially. As a result, she felt like the odd man out with peers and had a hard time in social situations. Yet it was through her interactions with Briten and the other cabin mates and other campers and the memories they forged together at Camp and SOMBFAB (Some of My Best Friends are Bald) that she was able to open up and be herself. Of her tribe of friends, Tiana says, “…they’ll always know the real me,” a sentiment that took on greater meaning when she was diagnosed a second time, with thyroid cancer, in 2016. (More on that later.)

While Chante never felt much uneasiness toward or from classmates, she does remember kids asking her whether she was a boy or a girl because she had short, thin hair from treatment. Diagnosed with acute lymphocytic leukemia (like Briten) at six, she spent a lot of time in the hospital. She credits her family with making the absence from school and friends less traumatic. “I have a large family that made the whole thing normal for me. They didn’t make a big deal out of [cancer] and they didn’t downplay it either. When they came to visit me in the hospital, it was just like normal family time for us.” Yet even with the support of her large family, Chante considers Camp the place where she and her friends went for true peer support. “At Camp you make the bonds really quickly and you’re basically never the outsider because everyone is in the same boat. Everyone has scars, everyone has doctor’s appointments and is throwing up from medications…you’ll never be the weird one.”

The sixth member of the close-knit cabin crew is Ashley Ross. Diagnosed at age three with Fanconi anemia, a blood disorder that affects bone marrow, she began attending Camp when she was eight, where she quickly fell into step with her new Camp friends. Each year, Ashley and the other girls would band together a week or so before Camp to begin practicing for the annual talent show. Lori explains: “We would always plan our skit for the talent show together…well, Briten would plan it, and then we’d go to each other’s houses and practice.” She adds, “Ashley always liked to dance in those skits.” That they had so many wonderful memories together and had been through so much as kids made it all the more shocking when, on August 1, 2015, Ashley passed away from squamous cell carcinoma, a form of skin cancer. Tiana recalls how devastating it was for her and the other girls to learn that one of their dear friends who they had grown up alongside was gone. “Shock was the biggest thing for all of us. I remember being at her service. Here we all are twenty years later, living our lives as adults, doing our thing, and this is happening.”

Once she turned eighteen, Ashley stepped away from the Camp community, which is not uncommon for graduating campers excited to enter the world as adults and not quite ready to return as counselors. Tiana says she did the same, and regrets not having connected with Ashley before she died. “We struggle with guilt that we didn’t reach out to Ashley more often. That’s another side of being a childhood cancer survivor: you do feel that guilt when people around you pass away,” says Lori. She adds that for her it reinforced Camp’s value as a support system not just for young campers but also for those who age out of the program. In her heart, Lori believes she and all of the other people from Ashley’s Camp family could have supported her better had they been able to stay connected with her through Camp.

Megan, Tiana, Robby, Chante, Lori, Briten

All grown up

Now in their late twenties or early thirties, Chante, Briten, Tiana, Lori, and Megan are doing the things typical of adulthood; they work, pay bills, go grocery shopping, file taxes, all the mundane tasks of living. Marriage and children are now on the table too. While they approach these endeavors with the same level of excitement and ambivalence as the rest of us, for them (and other survivors) the ups and downs of everyday life seem to be flecked with fear and frustration related to the experience of going through a traumatic ordeal as children. For instance, Lori, who had her reproductive organs removed as a child and cannot become pregnant, admits that while she is always happy to hear when a friend or acquaintance is expecting, she cannot help but feel a tinge of jealousy. And Megan, who also had her reproductive system removed, jokes with friends, “Are you sure you want that one?” when they announce being pregnant for their second or third child. While the reality of infertility is incredibly difficult for both women, they feel fortunate to have each other to lean on for support, particularly now since they are both married and looking to grow their families. While Lori and her husband are contemplating adoption, Megan and her husband are actively pursuing it. In fact, when she’s not working at her day job as a pediatric nurse, Megan operates a skincare business to help raise money for adoption costs.

Conversely, Tiana does not to have to worry about infertility; however, she does struggle with anxiety related to her health and her ability to be there for her almost-three-year-old daughter. Last year when Tiana was diagnosed with thyroid cancer, she says the hardest part was not being able to do her best as a mom. “Trying to parent while sick is really difficult. … It’s hard being a mom and not being able to basically run my body at 100% to be the best mom I could be for her.” Naturally, Tiana fears cancer will one day affect her beloved daughter. “As a parent, I don’t want to see my kid go through this. … I don’t know how I’m going to feel when she turns six,” (the age when Tiana was first diagnosed).

As for receiving the dreaded second cancer diagnosis, Tiana says it was incredibly lonely. “No matter how many people are there for you and reach out, it’s a very lonely thing to go through the second time around. As a kid you don’t know what’s going on and as an adult you have full awareness and it’s even scarier.” Chante, who also experienced a second cancer diagnosis (acute promyelocytic leukemia in 2011), says she also had anxiety as an adult that she didn’t have as a child going through cancer. “When you’re a kid your parents take care of everything for you. As an adult, you know exactly what’s going on and you remember.” Specifically, she recalls losing her long hair from chemo and having people ask her questions about it, which made her feel more self-conscious and anxious than she did as a child.

Work life is another area where Chante, an elementary school teacher, and her friends can experience difficulties related to having had cancer. “Sometimes my short-term memory isn’t so good, but as an adult you’re expected to have your shit together.” It can be tough to do certain tasks as quickly as I once did, she says. Tiana concurs and says that with her most recent diagnosis, it’s been hard for her to do her best as the events and marketing manager at a popular, fast-paced restaurant. “I feel like I’ve always been good at carrying a lot at once, multitasking, and I haven’t been able to be that person this year.” Chante adds that lapses in school or work history could be troublesome for survivors. While she hasn’t had to deal with it personally, she can see how having to explain things like taking longer than usual to finish school or large periods of time away from work could be stressful for cancer-affected jobseekers, especially when trying not to alert potential employers to your  preexisting condition.

Briten, who juggles three jobs—she’s a performer at two San Diego-based animal attractions and a promotions assistant at a well-known mass media corporation— typically puts on a bold face about her health issues and tries to stay busy to keep from feeling overwhelmed by the more painful or scarier aspects of her situation, from getting a bowel obstruction to worrying about cancer coming back. “I freak out that I’m gonna get cancer again. I’m watching it happen to so many people. … It freaks me out but I can’t think about it or it will consume me.” In fact, all of the women expressed fears about cancer returning or their health breaking down prematurely as a result of treatment. For them, this fear is always lurking, and for some, it bursts forward with unexpected force during times of stress. Briten tells the story of her last bowel obstruction just days before her thirtieth birthday: “I went into the hospital brave and strong on the outside. But I was freaking out in my mind, thinking, ‘This is it. This is how I’m gonna go.’ I broke down when the surgeon told me I had a complete bowel obstruction. … Time stops and your whole world stands still.”

The need to maintain a brave and strong façade seems to come with the territory of being a childhood cancer survivor and is something each of the woman understands well. After all, children with cancer are warriors, right? “Everyone believes in you and builds you up and you have these expectations to be something for everybody else. That probably contributes to not wanting to accept fear, stress, or anxiety,” says Briten. Lori agrees completely and admits to feeling guilty when, on more difficult days, she struggles to keep it all together. “As I get older, I get reminders of what my family went through and it’s like I’m trying to make up for what I put them through by not suffering. I try to pay back what they went through even though it wasn’t my fault.”

Of course no one is complaining about the armies of family members, friends, nurses, and doctors who cheered them on as children. When you’re a child going through cancer, you need that kind of support for your success, says Briten. “This network of people who made us feel brave was such a white to the blackness of the cancer.” Rather, the “warrior complex” is another unexpected and perhaps unavoidable aftereffect of battling a life-threatening disease as a child. Lori explains the warrior complex well: “As a kid cancer patient, it’s drilled into you that you’re a survivor, you are brave. The younger you are, the more it’s drilled into you. As you get older, now you have all of this emotional baggage that you have to deal with. Then as an adult when you can’t handle it anymore…you feel like you should be able to handle things because ‘we are strong survivors.’” Her friends expressed similar feelings, and each concluded that they would have benefited from some sort of therapy to help process their experience.

Camp spirit 4-ever

These days Lori has a hand in much of what goes on at Seany’s Camp Reach for the Sky in her role as the manager of pediatric programs and services at The Seany Foundation. Each summer, she and her fellow cabin sisters serve as counselors and mentors. Through there involvement, they not only get to stay connected to each other and their former camper friends who they grew up with, but also have the chance to put their heads and hearts together to create a truly magical experience for kids going through cancer right now.

Briten still remembers how fun Camp was and how it shaped her life. In particular, she recalls a time when she was about ten or eleven and had a truly incredible time at Camp because of the efforts of the program director at the time, Sheri Sevenbergen. “She did all these cool, amazing things. I couldn’t wait to find out every day what new fun things we would be doing. I had the best time under her leadership.” As the current program director for the Resident Oncology Camp session, Briten says the experience with Sherri inspires her to want to think up fun, creative ways to make Camp awesome for current campers. Because for Briten Camp is so much more than “just” a good time—although fun is pretty important for kids who have to contend with cancer—Camp is an source of strength. “Camp kept me holding on, that one week kept my motivation for life, even when kids were so nasty at school and cancer still followed me even though I was in remission for years. Camp was the highlight of my life.”

Megan’s fondest memories of Camp are the times she spent laughing and talking in the cabin with her bunkmates. Some of the most important conversations she had about cancer and the issues she was facing happened organically in that trusted setting, she says. She’s grateful when she witnesses this among campers now because she knows how deeply healing those moments can be.

Tiana laughs as she relays a memory of a giant food and water fight on the field one year when she was a camper: “Everyone was so happy everywhere you turned and there was so much joy. It was like, ‘I’m gonna attack you with food, but I do it out of love.’ Or ‘I love you, but I’m gonna squirt ketchup on you.’”

During our conversations, the happy memories from a childhood spent at Camp Reach for the Sky seemed to spill out of each woman. When you think about the hell they’ve been through, some of them twice, that is no small feat. But no matter what kind of adult-sized problems they are facing at the moment, they know they’ll always have each other to lean on. “You know when you get the call or the text, you drop whatever you’re doing because you know why, and you have that understanding that you can be really raw with each other,” says Megan.

“I don’t know a life other than cancer. Because I was so young, I don’t know anything else. For me it’s normal,” says Lori. And she’s not alone. There are nearly 400,000 childhood cancer survivors living in the United States today.[i]They share a unique experience that can only be understood by others who have walked this path. That’s why programs like Seany’s Camp Reach for the Sky are so vitally important; they help kids coping with a life-threatening illness to feel comfortable in their own skin not just for one week, but for a lifetime.

Is it stress or something more?

As a childhood cancer survivor, it’s natural to feel some stress about the status of your health. But if the fears and pain you experienced as a child went largely unexpressed, they may be causing anxiety, depression, or other negative emotional states of being. In some cases, the trauma of going through a life-threatening experience like cancer can lead to post-traumatic stress (PTS), which can manifest as irritability, fearfulness, or defensiveness. In some cases,[ii] even post-traumatic stress disorder (PTSD), which has symptoms more severe than PTS and includes flashbacks, severe anxiety, and insomnia and nightmares, can result. So if you think your experience of cancer as a child might be negatively affecting your life today, don’t hesitate to talk to a mental health professional. There is absolutely no shame in getting help. You don’t have to be a warrior anymore.

RESOURCES

For childhood cancer survivors:

Cancer-Related Post-traumatic Stress (PDQ®)–Patient Version:https://www.cancer.gov/about-cancer/coping/survivorship/new-normal/ptsd-pdq#section/_1

For parents of children with cancer or survivors:

Haunted by a Child’s Illness: http://well.blogs.nytimes.com/2013/10/14/haunted-by-a-childs-illness/?src=twrhp&_r=1

When to Get Help for Your Child: https://www.aftertheinjury.org/when-look-more-help-your-child

How to Talk to Your Child (video): https://www.aftertheinjury.org/how-to-talk-to-your-child

For healthcare providers working with children:

Healthcare Toolbox: Your Guide to Helping Children and Families Cope with Illness and Injury

https://www.healthcaretoolbox.org

In loving memory of Ashley Ross