I lost my hair, so other moms might not have to lose their child

I used to be preoccupied with the little things: What should we have for dinner? Did the kids take their vitamins? What colour should I dye my hair? That all just fell away, after my 13-year-old daughter, Haylee, got sick. All I cared about was her getting better. Instead of focusing on how sad it was for her to lose her beautiful long, dark-blonde wavy hair during chemotherapy, I threw my energy into finding ways for her to have fun, because this was where life had taken us.

We had a head-shaving party in Haylee’s hospital room, shortly after her hair started falling out in chunks. Haylee’s best friend, Hannah, and her cousin, Brandon, were among the guests, and the three kids all shaved their heads together. We were making so much noise that the nurses came in to see what all the laughter was about.

A few days later, I took Haylee shopping for wigs. Just as if we were on a typical trip to the mall, for a cute new bathing suit or something, I brought her all different kinds of wigs to try—first some that looked like her natural hair, then red ones, curly ones, shoulder length ones with bangs. She settled on a short, dark style—just for a change. I took photos of almost every look and she’s smiling in all the pictures. Those aren’t memories I ever imagined I’d be making with Haylee. Kids are not supposed to get cancer.

In the spring of 2013, Haylee started complaining about a sore knee. The doctor thought it was growing pains. She saw a chiropractor. Then she started feeling pain in her pelvis. “It’s right in my bones,” she would say. This time the doctor figured it was a dance injury—Haylee took hip-hop, jazz, ballet and lyrical classes, so a little wear and tear made sense. She did physiotherapy for a few months, but it wasn’t helping. By late January, 2014, I noticed she was starting to breathe shallow. I suspected she was coming down with pneumonia, so I brought her to the emergency room. I was right about the pneumonia, only things were so much worse than I could ever have imagined.

Haylee was rushed into an operating room where the surgeons pulled out four litres of fluid from her chest cavity. Her entire left lung had collapsed. Once she was stabilized, the doctors ordered a CAT scan. The results showed small tumours all over both her lungs—and a large one on her pelvic bone.

No, no, that can’t be right, I thought. That’s just not possible. I’d always been a bit of a health nut. I only gave Haylee and her 11-year-old brother, Connor, organic and sugar-free homemade foods. We had nothing but chemical-free soaps and shampoos and natural cleaning products in the house. And at the first sign of nice weather, I’d slather them both with sunscreen. How could Haylee have got cancer on my watch?

What I would learn from her doctors in the days that followed was that unlike adult cancers, very little is known about the causes of childhood cancers—they’re not linked to lifestyle and environmental factors. Even more shocking to me was the fact that only 5 percent of all cancer research funding goes to childhood cancers. Pharmaceutical companies have developed hundreds of new drugs in just the last few years for adult cancers, but there have only been two new cancer drugs approved for kids in Canada since the 1980s.

That first night at the hospital, Haylee was really scared, so I’d promised her I’d never leave her side. And I didn’t for weeks. I slept on the floor by her bed. The doctors thought she had lymphoma at first, but the biopsy of the tumour in her pelvis came back as sarcoma. So Haylee did a round of chemotherapy. She vomited a lot throughout and the common side effect of pain and tenderness in the mouth was even worse for her, because her braces were cutting into all the sores. And then of course, she lost her hair.

But the tumours didn’t shrink. New lab results came back, and this time they said she had a melanoma. There was no mole or any other outward sign of cancer on her skin, but the doctors theorized it could have started underneath her skin, right in the tissue. It was such a confusing time, as we tried to wrap our heads around a diagnosis that kept on changing.

Chemo does nothing for melanoma, so Haylee didn’t do another round. As for many childhood cancers, a treatment had yet to be developed for Haylee’s cancer. She started taking an experimental immunotherapy drug, and we all just had to hope for the best.

My husband, Jody, and I started spending thousands of dollars each month doing all this additional naturopathic stuff to try and support her immune system. Lots of juicing. Supplements. Homeopathic drops from Alaska. Chaga mushrooms. Apricot seeds. Frankincense oil. Hemp oil. Baking soda and honey. We were using an alkalinity testing kit because we’d been told that cancer couldn’t thrive in an alkaline environment. We tried coffee enemas, (poor kid!). We tried everything. Something has to work, we thought, so let’s just try everything.

Haylee’s daily schedule as a cancer patient was constantly busy with scans, X-rays and so many pokes that she felt like a pincushion. I was always trying to get her to eat. There wasn’t much in life Haylee didn’t like, but she had always been a picky eater. Only now, it didn’t even matter if she liked the food in front of her. She could barely swallow. A tumour in her esophagus was making it hard to get the tiniest bite down, and soon that same tumour was pushing all her organs into the wrong places. One day Haylee noticed she could feel her heart beating right in the centre of her chest, instead of on the left-hand side.

All the time, my daughter was keeping up with class work in her hospital bed, because she was counting on going back to school soon. She planned to go to university after high school and study to become a doctor—probably a pediatrician, because she loved kids—or maybe an orthodontist or optometrist. She maintained her grades in the high 90s. Meanwhile, the doctors were taking Jody and me aside and saying, “There are more tumours now, and they’re growing faster. Prepare yourselves.”

We’d be devastated after those conversations, but then we’d walk back into Haylee’s hospital room and she’d be joking around and she seemed like her normal Haylee self—so, then we’d be thinking: Everything’s going to be OK; she’s going to be the miracle child, because look at that spirit! If people came into Haylee’s room and started to cry, she’d tell them to stop. She made a sign—“No crying allowed”—and hung it on her door.

Haylee got to come home for a few weeks in April, but then on Easter Sunday, we had to take her back to the hospital, because even with an oxygen tank, she was struggling to breathe. A CAT scan showed that her tumours had exploded everywhere—all over her spine, her torso and her neck. The doctors said, ‘She’s likely got two days to two weeks.’ My heart began pounding; I started to sweat; I felt numb as it sunk in that there was no longer hope. The doctors asked us to sign a DNR (Do Not Resuscitate) order, so that Haylee could die with dignity, once she was no longer able to breathe without assistance.

The following day, we had to pull ourselves together to tell Haylee the cancer had spread. We decided not to tell her the doctors’ timeline. We just said “They’re still doing everything they can.” She couldn’t even swallow water by then, but she still wasn’t giving up, “OK, let try a feeding tube now,” she said. “Let’s get more juice down."

Just two days after the doctors gave their prognosis, Haylee was no longer able to breathe when she lay down. She was very weak, but she kept trying to prop herself up in bed. Her lungs were making a loud rasping and gurgling sound. The nurses called it a death rattle. It was terrifying to hear. We knew what was coming next, even if a part of us never stopped clinging on to the chance there might yet be a miracle.

We asked the nurse to give Haylee some medication that would help her to fall sleep, so she wouldn’t suffer in her final hours. Even after taking the meds, Haylee would close her eyes and then pop them open again, fighting sleep. Jody and I lay on either side of Haylee, holding her as she drifted in and out of consciousness for the next few hours. Her grandparents and brother were in the room and nurses and doctors were coming in and out. I remember singing “You Are My Sunshine,” because I used to sing that to her when she was a baby. I’d always been so careful to follow Haylee’s no-crying rule, but at that point, it was too hard not to. Haylee was so groggy, but somehow she heard me sobbing and came round. “Don’t cry.” she said. “But I love you so much,” I answered. “I love you more,” she said.

That was the last time Haylee spoke. She drifted off to sleep around 10 p.m. that evening. At around 7 the next morning, April 26, 2014—exactly three months after first being admitted into the hospital and receiving a cancer diagnosis—she died in our arms.

Four years later, I’m still grieving. Jody and I talk about Haylee a lot, as if she’s still here. We do everything we can to support Connor, who was so tight with his big sister. I worry that sometimes he might keep things to himself, because he knows how sad we are and doesn’t want to make us any sadder, but we always tell him he can talk about missing Haylee at any time, even years later. I can tell when he’s having a bad day, if I see him slump over a little and look sad and get even more quiet. He’s 15 now and I still hug him several times a day, whether he likes it or not. Connor gives me a purpose; I still want to give him a happy childhood and a good life, even though we all miss Haylee so much and it can take a lot of effort to push through the sadness.

After Haylee’s death, I started noticing feathers all the time: When I walk outside there will be a feather that drifts down from the sky in front of me. Or there will be a feather on my car, when I come back from some errand. When I see the feathers, I think that’s her sending them to me.

Two years ago, I got a tattoo of a feather done on my arm to honour Haylee. And I also had “Live” written, across the top. My daughter is gone, and it’s hard to get up every day and do anything other than be sad. But for some reason my body is still here and breathing, and I don’t know why. People say “You’re so strong,” but I never wanted to have to be strong. Still, I think Haylee would have said, “You have to live your life, Mom—you have to live,” so I got the tattoo as a constant reminder.

Every year since Haylee died, Jody and I have done fundraisers in her memory to try and make sure that one day no other child will have to go through cancer and no other family will have to lose a child to this horrible disease. This year I wanted to do something really radical.

I kept seeing a call-out for the Mom Squad Cancer Shave, an event organized by Childhood Cancer Canada, pop up on my Facebook feed. The idea of raising funds by going bald, just like Haylee was after chemo, really resonated for me. At the same time, it filled me with terror. I have a lot of big, curly hair and it is something I’ve always hidden behind. Every time I saw the callout I’d think, I wish I could do that, but I can’t.

But I realized that if I did this type of fundraiser, people would notice my hair was gone and ask questions, so I’d have the chance to educate them and talk about Haylee. I really wanted people to learn about the symptoms of cancer in children, so they could look out for their own kids. Early cancer detection and diagnosis can save a child's life: In eight out of ten kids, the cancer has already spread to other areas before it is diagnosed. Early diagnosis is crucial. I wanted everyone to know that if a child talks about pain and it can’t be explained, you don’t let the doctor send you home—you keep being an advocate until you have answers.

Jody and I flew into Toronto a few days early for the Mom Squad Shave. Together with my husband, I had raised $20,000 for Childhood Cancer Canada, an amazing charity that supports kids with cancer and their siblings, as well as funding research into cancers that affect children. In the hours leading up to the event, I wasn't nervous—just excited. This was what we had worked so hard for.

When it was my turn to get into one of the barber’s chairs, in front of a small crowd at Love Child Social House, it was very emotional for me. I had such a strong sense that Haylee was right there with me, holding my hand, and it felt like an honour to do something like that for kids like her.

As the hairdresser started shaving my head, I saw a big chunk of long curly hair fall on my lap and I thought, Oh my gosh, that was such beautiful hair, and it’s not on my head any more! I felt so vulnerable. I held hands with Jennifer, the Mom Squad mom beside me, and with Jody too—all of us in tears—as the last off my locks were buzzed.

When my head was fully shaved and they turned me round to look in the mirror afterwards, it took my breath away. I swore I was looking at Haylee’s face. I’d never realized before that we looked so much alike.

I felt so much love from everyone in the room that night. And I felt this powerful connection with the other three freshly-shaven women in the Mom Squad. In our hometown, I don’t know anyone else who has kids that have been through cancer. To find myself with these mothers was such a relief. They felt like kindred spirits. That said, ours is a club, I wish for no other mother to have to join.

A few weeks on, and it’s still a shock to me every time I look in the mirror in the morning. Jody doesn’t care that I’m bald. He just loves me, and he was so proud of me for doing the Shave. He thinks it’s amazing how much I look like Haylee too, with my curls temporarily gone. That was an unexpected perk of the Mom Squad Shave and a small comfort.

Our daughter has always found ways to make her presence felt. She was such a bright light.

—As told to Valerie Howes

Read more: How to tell your kids a loved one has cancer It's the biggest test of my life: Raising two kids after my husband died