It was October of 2014 when Willow Pickard was diagnosed with a rare form of liver cancer formally called fibrolamellar hepatocellular carcinoma when she was just 18 years old. This cancer accounts for less than 1% of all primary liver cancers and is predominantly diagnosed in patients in their young teens to late twenties. It took Willow and her family over three years of doctor’s visits due to unknown stomach pain before her official diagnosis was given. “They kept telling me that, oh well it’s just what you’re eating, or it’s just your hormones, or like you’re a girl that’s the problem. So I kind of trusted them . . .,” said Willow. After waking up one day, she discovered visible tumors sticking out of her abdomen and was immediately taken in for a CAT scan where she was told she had cancer. As Willow explained, “it happened really fast . . . the doctor’s told me that I had a year left, the outcome for this cancer is really low .”
Being diagnosed with cancer has become an unfortunate norm in today’s society where cancer rates are continually increasing. According to Cancer Research UK, “one in two people will develop cancer at some point in their lives.” Peter Sasieni, a professor and current researcher at Cancer Research UK claims, “cancer is primarily a disease of old age, with more than 60 per cent of all cases diagnosed in people aged over 65. If people live long enough than most will get cancer at some point.”
For Willow that day came sooner than expected and nothing could have prepared her for her diagnosis. “I was kind of confused because I couldn’t even catch up my thoughts, I just didn’t even know what to do.” Soon after Willow quit her restaurant job and began e-mailing her professors, explaining that she would not be coming back to school. “I needed to focus on myself and maybe that’s what the universe was telling me, that [what] I needed to do at this time is really figure myself out.”
Options for treating fibrolamellar are difficult due to its rare nature. Many patients like Willow have their tumors removed, which significantly increases survival rates. Presently there are no well-studied chemotherapy or other surgical alternatives according to The Fibrolamellar Registry; a website for patients with fibrolamellar hepatocellular carcinoma. Willow was placed on a two-week, one week off cycle of chemotherapy to help kill off any active cancer cells, “I get chemo continuously for two whole weeks and I carry around a backpack with it in it . . .” Willow must also take a interferon shot every night, which helps her body fight off infections and tumors.
Hearing you have a cancer that only accounts for 1% of the population can be devastating yet Willow’s power to embrace what lies ahead truly illustrates the power of the human spirit. After her diagnosis in October, Willow began to research vegan and plant-based diets. She also started looking into meditation and holistic practices to treat her cancer. “I was told that no one was really going to do anything for me . . .” so she took it upon herself to figure out how she wanted to live her life. Juicing has became a major part of Willows daily routine which led her to work at a juice bar in her spare time. “It definitely helps me stay positive.”
For Willow it is the experience she shares with customers, some who also have cancer that truly puts her struggles into perspective. “I am kind of weird in that way cause I meet a lot of people going through chemo treatments and with cancer . . .” She enjoys talking about her story and hearing how other people are fighting their battles as well. “When people come to the juice bar and I get to tell them my story, it definitely gives them hope . . .”
There is an undoubted sense of hope in Willow’s voice and while most teenagers are focused on hanging out with friends and attending school, Willow has decided to work part-time while going through chemotherapy. “Ive definitely had times where working at the juice bar. . . I am tired and whoever I’m working with definitely sees that.” She explains that things are harder during her chemo cycles, “My mind is definitely more clear when I’m not on chemo . . . on chemo sometimes I do feel super cloudy and it is hard for me to think things through and get clear thoughts.”
During her treatment Willow continues to wear her backpack, though it is a part of her routine, the weight of the bag is not easy to ignore. “That two weeks of chemo that I carry around in that bag is heavy so it hurts my lower back sometimes but I feel like I constantly have something tied to me.” Simple tasks such as showering still require Willow to carry her bag with her, which she hangs up making sure nothing gets wet. Even on her off week cycle period, the backpack still seems like a part of Willow that cannot go away, “mentally and psychologically its always there.”
It seems as though Willow’s optimism continues to grow though the future is still a scary topic to think about. “[It] is hard to talk about because who’s going to say where we’re gonna be you know. A year ago in October they told me I wasn’t even gonna be here.” For now Willow continues to focus on herself but like anyone her main goal in life is to achieve happiness. “Anything is possible and all you can really do is live day by day and make those choices that are gonna benefit you in the future . . . and work towards where you want to be and who you want to be as a person . . . and help some other people along the way.”
How does a parent deal with hearing that their child has cancer? For Dough Pickard it was devastating. “You just go numb, you know as a parent . . . it was shocking at first but then a little bit of anger at the doctor that didn’t diagnose her prior. You go through stages the whole stages . . .” According to CureSearch for Children’s Cancer, a national non-profit foundation, the parents of an estimated 15,700 children will hear the words “your child has cancer.” The number of annually diagnosed cases has not declined in nearly 20 years. Dough and his partner Deirdre Kosky (not the biological mother of Willow) make an effort to stay positive by looking at how much Willow’s health is improving. “Certainly before the diagnosis, she had never seemed so healthy,” says Deirdre. “She used to have moments where she was really down . . .”
Strangely enough however, Deirdre and Dough claim that Willow has never felt so positive though that doesn’t always stop the difficult days from happening. “I just spend time with her,” Willow’s father explains when discussing how he helps her through the harder days. “We are addicted to a few shows, on those nights we sit down and watch television . . . [I’m] there for her . . .” During her chemo treatment, Willow feels what many other individuals going through chemotherapy do which are flu like symptoms, often causing dizziness and for others vomiting. Willow however is optimistic; her dad describes her as “very stubborn” because she refuses to give up. “She’s got to beat it like she says.”
With more than 40,000 children facing cancer treatment each year, many foundations are coming out with resources for parents who need support during such a challenging time. The American Cancer Society provides information on how parents can cope. They address issues such as feeling frustrated or depressed, emotions Dough has faced throughout his life. “She can tell when I am having a down day,” explains Dough. “She will pull me out of it she’s like dad you can’t be down . . . I’m the one with the cancer . . .” It is clear that Willow has created an inner strength within her family. “She’s living life like she said and nothing is going to stop her.” Dough makes sure he spends quality time with Willow and continues their tradition of going to concerts together. Deirdre has also become an important support system for Willow and inspired her to adapt the juicing lifestyle she is now accustomed to. She also created a GoFundMe page with Willow’s friend Moira Tice in hopes of raising money for Willow’s medical treatments. The page asks for whatever donation a person is able to make and utilizes hashtags such as #WillowWarriors and #TeamWillow.
For many parents, having a child receive a cancer diagnosis can be heartbreaking and Willow is only one out of the 15,780 children and adolescents who will be diagnosed with cancer each year alone. The American Cancer Society provides numerous resources for parents who are facing the initial depression Dough felt along with how to cope with such difficult news. They suggest family members take care of themselves. According to their website, “When the parents and other important adults take care of themselves, it reminds the child that self-care routines are still important. Parents and other caregivers may need to be reminded to see their family doctors for their own personal health problems and concerns.” They also suggest getting other people involved whether that be friends or the community you live in.
Though the number of diagnosis’s per year may seem daunting, there is a comfort in the amount of people who are going through this experience. The saying “You are not alone,” has never rung so true. The American Cancer Society has also created a series of videos for people who are survivors, reminding everyone that a diagnosis is not a death sentence.
The Pickard family continues to stay positive, especially Willow who recently wrote an update on May 9, 2016 on how she is feeling via her GoFundMe page.
“I have to say.. I haven’t looked at this (GFM account) in a couple days and I just went on and you know what happened? I felt such an overwhelming wave of warmth and love wash over me. It was such amazing energy to experience. Reading through the notes people left created happy tears in my eyes. It’s just incredible how so many people have come together to help and support me and my family. Many people I know and then there is the crazy amount of strangers! People I don’t even know or who I’ve never met but have been following my story and sending me love from where ever they are. Well I’m getting it believe me. I can feel it everyday. I’m just so thankful for everyone. I really have the best support system and the most amazing willows warriors to back me up. I’m so grateful. Who knew life could be this beautiful.”
Video Editing, Writing and Design by Nina Peskanov