Roanne Barnes Hautapu

@roanne-barnes-hautapu | contributor
Roanne Barnes Hautapu lives with her family in New Zealand. Both of her children have endured years of chronic medical issues. Her daughter, Quinn, was diagnosed in 2013 with a rare brain cancer called a primitive neuroectodermal tumor (PNET), and her son, Fletcher, has anaphylactic allergies and eczema. Their lives for the past 15 years have revolved around hospitals. You can follow Quinn’s cancer journey here.

The Truth About Childhood Cancer and Hair Loss

September is Childhood Cancer Awareness Month. Gold is the awareness ribbon. “It’s only hair. It will grow back.” My daughter was just 7 years old when she was diagnosed with a malignant primitive neuroectodermal tumor (PNT) in her brain. Her treatment included high-dose radiotherapy to her head and spine, several intravenous chemotherapy medications and stem cell rescue. The radiotherapy took her hair; first at the targeted site – tufts and clumps similar to molting – then eventually all over. As a mother, as her mother, it was a harrowing experience – one that slapped me squarely into reality that my child, my daughter, my 7-year-old, really did have cancer. “It’s only hair. It will grow back.” The chemo ate her eyebrows. And eyelashes. And body hair. She shivered with the cold and wore knitted beanies – not to hide her baldness, but to keep herself warm. Weeks after the cancer treatment concluded, the miracle of hair growth restarted – although not at the radiation site. We quipped that her cancer had been blasted so well, that it blasted her hair along with it. She is now six years off treatment; six years of being a cancer survivor. The permanent alopecia she has been left with is a daily reminder of what she has been through. And how far she has come. “It’s only hair. It will grow back.” Did you know? Hair loss can be a common result of cancer treatment. Hair loss is called alopecia. A major function of hair is to insulate the body. Radiotherapy to the scalp can permanently damage hair follicles. Chemotherapy destroys fast growing cells – cancer and hair. Hair loss can range from mild thinning to full baldness. Hair loss may be gradual or rapid. Head, body, pubic, eyebrow and eyelash hair may all be affected. Hair may grow back thinner, a different color or texture or not at all. September is Childhood Cancer Awareness Month. Gold is the awareness ribbon.

What to Tell Others When Child Gets Diagnosed With Cancer

Dear Friends, Family, Neighbors, Acquaintances and the Community: My child has been diagnosed with cancer. We’ll be in the hospital for months during treatment. Away from home. I know this news has shocked and upset you, but please don’t cry on my shoulder as I am unable to support you. Cry with me but not to me. We appreciate your thoughts even if I don’t reply to your texts, emails or messages. Answers to questions are hard to form in my mind, but I might manage a yes, no or thanks. Until we set up a social media portal to make news updates to you all, we’ll filter information through a designated person at home, who will then, in turn, forward it on to you. Yes, you can fundraise for us even if I say no. I have no concept of the financial hardships ahead of us. Think for me as my brain will be mush. Go ahead and empty our fridge at home. Turn off the hot water. Mow our lawns. Collect our mail. These things won’t cross my mind. I will be in shock. Want to visit in three hours, three days, three weeks or three months’ time? Do it. Make plans. Come and see us. But as time will lose all meaning, I won’t be able to commit to availability until “the moment.” I’ll be tired. Bone-achingly, mind-blowing tired. I’ll appreciate your presence even if I’m not up to talking much. Perhaps you might offer to sit with my child. Perhaps I might take you up on it, so I can I leave the hospital for some fresh air, a shower, sleep, a break. Although an adult is expected to be with my child at all times on the ward, parents aren’t provided any meals. I’ll be hungry. Receiving your nutritious baking, ready-made meals and fresh fruit will be a blessing. Oh, and a good caramel latte would not go amiss. That was a sad story about your hairdresser’s cousin’s neighbor’s sister who had a totally different cancer than my child. And died. But no, no, no. Absolutely inappropriate. Please don’t think of me as rude or ungrateful if I don’t personally or publicly thank you for your well-thought-out gift, letter or card you sent to us. I can have faith in your altruism if you can have faith in the postal system. A hug or your silent company will be of more value than a thousand meaningless words or forced conversation. I will have limited access to sleep, time, peace, head space, food, technology, Wi-Fi. Thank you for your understanding and support and love. From a Parent of a Child Newly Diagnosed With Cancer Follow this journey on Facebook at Quinn’s Quest. The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here .

Justin Bieber Grants Make-a-Wish and Meets Young Cancer Patient

From the very first time my daughter, Quinn, and I heard Justin Bieber croon his song “Baby” in 2010, we were Beliebers. We played the song loudly and relentlessly, and to the dismay of the rest of the family, I also sang along passionately to the lyrics. In 2013, Quinn, who was 7 at the time, was diagnosed with an aggressive brain cancer called a primitive neuroectodermal tumor (PNET). Justin unknowingly became a source of great fortitude for Quinn during her illness. Within days of being told she had cancer, she insisted we immediately fill out a Make-A-Wish Foundation form so she could apply to meet Justin Bieber. Without a second of hesitation, she knew what her one true wish was. Quinn decorated her hospital room walls with posters of Justin and spent many hours watching his DVDs and listening to his songs. “There were two special songs that helped me stay strong during my cancer treatments: ‘Believe’ and ‘Be Alright,’” Quinn said. “I told myself over and over again to believe I would get better and that everything would be all right. And it worked.” The radiotherapy team got on board with Quinn’s obsession and made a giant-sized Justin Bieber poster for her to mark off each radiotherapy treatment she had. They also bought a Justin Bieber CD for Quinn to listen to while she was in the radiotherapy machine. “When I had radiotherapy, I would get this funny smell in there,” Quinn said. “Whenever I hear ‘All Around the World,’ the smell comes back to me.” If Quinn vomited from a chemotherapy treatment or got a temperature, she would say, “I’ve got ‘Bieber Fever’ again.” Roanne’s daughter, Quinn, with Justin Bieber. Quinn spent her 8th birthday at the Ronald McDonald House in Auckland, New Zealand. My Canadian friend, Natalie, sent us Justin Bieber-themed party supplies, and Operation Sugar organized a cake. Within a few days of finally returning home and after months of treatment in another city, Make-A-Wish advised Quinn that she would get to meet Justin and attend his upcoming concert. She had harbored her dream, her wish, steadfastly for many months. It had helped her during some of her sickest days. It had given her a goal, something to look forward to. And now it would finally happen. The pure unadulterated joy on Quinn’s face when the Make-A-Wish volunteers came to our house with all the details is a moment seared indelibly in my mind. Quinn had believed, and everything was going to be all right. The day dawned. Quinn made a little photo album to give to Justin depicting his unwitting involvement in her life and wrote him this letter: Justin took it from her respectfully, hugged and kissed her, autographed merchandise and posed for photos. He was such a gentleman — courteous, charming, gently spoken. Justin Bieber has granted more than 250 wishes through the Make-A-Wish Foundation, according to Today. Pretty impressive for any young man. The power of a wish.The power of a dream.The power of believing it will be all right. Follow this journey on Facebook at Quinn’s Quest. The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

What to Tell Others When Child Gets Diagnosed With Cancer

Dear Friends, Family, Neighbors, Acquaintances and the Community: My child has been diagnosed with cancer. We’ll be in the hospital for months during treatment. Away from home. I know this news has shocked and upset you, but please don’t cry on my shoulder as I am unable to support you. Cry with me but not to me. We appreciate your thoughts even if I don’t reply to your texts, emails or messages. Answers to questions are hard to form in my mind, but I might manage a yes, no or thanks. Until we set up a social media portal to make news updates to you all, we’ll filter information through a designated person at home, who will then, in turn, forward it on to you. Yes, you can fundraise for us even if I say no. I have no concept of the financial hardships ahead of us. Think for me as my brain will be mush. Go ahead and empty our fridge at home. Turn off the hot water. Mow our lawns. Collect our mail. These things won’t cross my mind. I will be in shock. Want to visit in three hours, three days, three weeks or three months’ time? Do it. Make plans. Come and see us. But as time will lose all meaning, I won’t be able to commit to availability until “the moment.” I’ll be tired. Bone-achingly, mind-blowing tired. I’ll appreciate your presence even if I’m not up to talking much. Perhaps you might offer to sit with my child. Perhaps I might take you up on it, so I can I leave the hospital for some fresh air, a shower, sleep, a break. Although an adult is expected to be with my child at all times on the ward, parents aren’t provided any meals. I’ll be hungry. Receiving your nutritious baking, ready-made meals and fresh fruit will be a blessing. Oh, and a good caramel latte would not go amiss. That was a sad story about your hairdresser’s cousin’s neighbor’s sister who had a totally different cancer than my child. And died. But no, no, no. Absolutely inappropriate. Please don’t think of me as rude or ungrateful if I don’t personally or publicly thank you for your well-thought-out gift, letter or card you sent to us. I can have faith in your altruism if you can have faith in the postal system. A hug or your silent company will be of more value than a thousand meaningless words or forced conversation. I will have limited access to sleep, time, peace, head space, food, technology, Wi-Fi. Thank you for your understanding and support and love. From a Parent of a Child Newly Diagnosed With Cancer Follow this journey on Facebook at Quinn’s Quest. The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here .

My Daughter's Cancer Doesn’t End When She Looks ‘Well’ Again

Our 9-year-old daughter, Quinn, finished her cancer treatment a year ago. My husband and I are excited to attend her class assembly at school. Back to some normality. Familiar ground. Our comfort zone. We stroll through the school grounds together, holding hands like sweethearts and enjoying the mild sun of early summer. Other parents smile and wave with promises of a catch up afterwards. We take our seats at the rear of the hall in happy, amicable silence as the school children start to pour in. The children. The able-bodied children. The healthy, able-bodied children. The innocent, healthy, able-bodied children. The cancer-free, innocent, healthy, able-bodied children. I can feel the beating of my heart as it revs up a notch. My breathing takes the cue and starts to compete for speed. A single bloated tear rolls languidly down my cheek. I discretely slip my sunglasses on and accidentally activate the free flow tear control. My heart continues to pulse at a startling pace. At a glance I could appear to be in labor as I begin to pant for breath. The children. The children. The cancer-free, innocent, healthy, able-bodied children. I feel tormented by their presence, by their mere existence. A rare question spits out of my tumultuous mind with burning fury: Why my child? I can hardly breathe. It’s just short, shallow gulps. Tears drizzle down my face, and my chest burns from the staccato rhythm it has been playing. I gasp to my husband that I have to get out. Have to leave. I stumble out of the hall, leaving him in confused pursuit. He holds me in his arms, and I moan with the physical and mental agony that has been evoked. He offers to drive me home, but I tell him he can’t. Quinn would be so disappointed if we both left. I start the walk home. One foot in front of the other. Left. Right. Left. Right. I consciously take slow, deep breaths that I hold as long as possible before release. In. Hold. Out. In. Hold. Out. In. Hold. Out. I start to calm with the meditative regimentation of my stride. I lie on the bed feeling drained, depressed and embarrassed. My breathing and heart rate reaches status quo. But not my mind. Damn you, panic attack, for blindsiding me. My daughter’s cancer doesn’t end when she leaves hospital. My daughter’s cancer doesn’t end when her bald head sprouts hair. My daughter’s cancer doesn’t end when the feeding tubes are removed. Childhood cancer doesn’t end when she looks “well” again. An excerpt from my book in progress, “Quinn’s Quest: Behind Closed Doors.” Follow this journey on Facebook at Quinn’s Quest. The Mighty, in partnership with Fuck Cancer, is asking the following: What’s the best advice you’ve gotten or a mantra that spoke to you following your diagnosis? Find out how to email us a story submission here .