What Raising A Child With Leukemia Is Honestly Like
When you're a parent, you don't ever consider the reality that it could happen to you, that it could happen to your child, that you might one day know what it's like to raise a child with childhood cancer. But the Lillystones are one of thousands of families who do. In 2013, 3-year-old Hudson Lillystone was all dressed up in her wolverine costume and ready to go trick-or-treating. Her mom, Emily Lillystone, sent her off with her older brother, twin sister, and neighborhood kids. Two houses later, Hudson called her mom saying she didn't feel well and asked to come home. Emily remembers Hudson hadn't been feeling well for a couple of months. She'd been complaining of her stomach hurting and that she was tired. But really, what kid doesn't whine about those things? Thinking it was junk-food overload, Emily and her husband Ian threw the cookies, chips, and anything of questionable nutritional value in the trash.
"You know, we hear this all the time. A lot of symptoms don't scream cancer. 'My tummy hurts,' 'I don’t feel good,' 'I’m tired,'" Emily says in an interview with Romper. "Especially the age she was. She was 3 years old. She was still growing. There was so much stuff going on." Hudson's pediatrician kept thinking she was suffering from a recurring strep throat and would prescribe antibiotics, but when Emily took Hudson to the doctor just days after that Halloween night, she insisted on a blood test for her daughter.
Emily's experience with childhood cancer is not unique, but the way she tells it is. She's raw, relatable, and radically honest when recounting the days her daughter was in treatment. I teamed up with Atlanta-based photographer Melanie Mercogliano to help tell her story in a project entitled, F*CK Cancer: A Mom Gets Real About Childhood Cancer. It's a photo essay we created to help illustrate what it's like as a mother to live with childhood cancer and its haunting aftermath. A big part of Emily's story is how cancer can be relentless, but as a mother, so can she.
This is her story.
"There was that moment [when our doctor just thought it was strep throat] I could’ve said 'OK,' and gone away. [But] I just did that motherly gut thing where I said, 'I’m not leaving here; there is something wrong with her. And I don’t know what it is, but something’s not right,'" Emily said in an interview with F*CK Cancer: A Mom Gets Real About Childhood Cancer.
So, Hudson's doctors tested her. The test came back with really high white blood cell counts, and Hudson was admitted to the Children’s Hospital of Atlanta (CHOA). After more tests, she was diagnosed with leukemia and started treatment that same night.
Emily was shocked to the core:
I didn’t break down and cry. I knew it. I knew something was wrong. I just put on blinders and immediately started thinking I need to have a plan.
Hudson had to stay 10 days in the hospital, which meant Emily immediately needed to spring into action, arranging childcare for Hudson's twin sister Kingsley and older brother Charlie, who was just 5 years old at the time. Emily's parents in Pennsylvania also came down to help out, and while she waited for them to arrive in Atlanta, the family's neighbors pitched in to help. They got the kids on the bus and took them to the movies. No one knew what to say or do, they just did. They did whatever was necessary to help Emily care for her other children while she was at the hospital holding her daughter's hand through her first round of chemotherapy and surgery to get a port inserted, which is a small plastic or metal disc that goes right under the skin. A catheter can be connected to it and the chemotherapy is administered that way. Blood can be drawn through the port as well and it's used so as not to "blow out the veins."
Hudson's initial hospital stay was an intense 10-day whirlwind filled with an overwhelming amount of information, unfathomable emotions, and an unthinkable questions about her future.
It didn’t take long for their curiosity to hit on everyone’s unspoken fear. "Charlie looked at me and asked, ‘What if Hudson doesn't take her medicine?'" Emily hadn’t expected the question to come up so fast, but she knew she had to respond honestly.
Emily knew at some point she had to check in with her family at home. So she did what no mother would want to do in that situation even though she had to: She left her daughter's side to venture home while her husband Ian stayed at the hospital. Emily arrived home with a special duck and a script written out by the hospital to help explain cancer to her young children. She had to explain something she could barely even explain to herself: Her daughter had cancer. Hudson had cancer.
Explaining Hudson’s cancer to her twin sister Kingsley and 5-year-old Charlie was hard. Emily told them that their sister had to get medicine to fight germs. And that her hair would fall out. But it didn’t take long for their curiosity to hit on everyone’s unspoken fear. "Charlie looked at me and asked, ‘What if Hudson doesn't take her medicine?'" Emily hadn’t expected the question to come up so fast, but she knew she had to respond honestly:
Well, buddy, she will probably die.
"At one point she looked at us and said, 'I look hideous.'" She insisted on shaving her head shortly after. In a show of solidarity, her father and brother did too.
Kingsley could barely sleep without Hudson at home. She kept asking where her sister was, and it was heartbreaking. Emily remembers how every hour she would wake up looking for her. Soon enough, Hudson was in the thick of treatment. In addition to chemotherapy, she had to be on steroids for 28 days. "She'd look in the mirror and say, 'Who is that?' because her face was all blown up, and her hair was starting to fall out," Emily told F*CK Cancer: A Mom Gets Real About Childhood Cancer.
"At one point she looked at us and said, 'I look hideous.'" She insisted on shaving her head shortly after. In a show of solidarity, her father and brother did too. And while Hudson was shedding her appearance, her mom was trying to keep appearances up:
You try to create a sense of normalcy. You’re trying to keep a marriage together with your husband, you want to keep a life for your two other kids. And everyone had to deal with part of this. You try to keep up this atmosphere so that everyone can go on functioning as normally as possible.
But that’s just what it is, in part: an illusion. Things are not normal. And they are definitely not fine. However, Emily did what so many mothers do: plowed ahead savagely for her kids, especially in a time of sheer peril. "I made it seem like I was doing fine. I put on a this tough-guy exterior," Emily said to F*CK Cancer: A Mom Gets Real About Childhood Cancer. But she says her husband Ian was visibly anything but fine: "He was much more emotional up front and you could see the emotion on him much more than you could on me. He was very upset throughout."
Ian’s dad was killed by a drunk driver a week before he was born. His mom had a brain aneurysm that left her brain dead and he was just 20 years old when he had to make the decision to take her off life support. Emily thinks he was, in part, blaming himself for what had happened to Hudson. "When Hudson got diagnosed, he just looked at me and, 'I’m sorry, now you’re a Lillystone,'" Emily tearfully told F*CK Cancer: A Mom Gets Real About Childhood Cancer. "This is what happens. Basically, this is what f*cking happens to us."
But after the worst part of Hudson’s treatment, when the light at the end of the tunnel slowly came into view, Emily went dark. She was never officially diagnosed, but she suspects she was dealing with post-traumatic stress or some type of delayed depression. "I think, during all of that, somewhere I just kinda got lost in the middle. And I was like, doing it. I mean I thought at the time, 'Yeah I got this. I got this,'" Emily told F*CK Cancer: A Mom Gets Real About Childhood Cancer.
But the reality was that some days she couldn’t get out of bed:
I didn’t want to go to work. I didn’t want to do anything. And I just felt very like, I just wasn’t there. I was trying to pull myself out of it.
She was emotionally drowning, but with support, especially from her husband, she thankfully pulled through and continued to be the pillar and planner for her family. Getting better, enduring, and persisting — she started to look ahead and feel positive about the road ahead. Perhaps nothing better symbolizes the Lillystones' struggle, resilience, and ultimately, their hope, like the matching tattoos she and Ian got during their daughter’s treatment.
According to the American Cancer Society, cancer is the second leading cause of death in children aged 1 to 14 (after accidents). Approximately 1,250 children younger than 15 years old will die from cancer in 2016.
Emily says this quote (the origins are unknown) immediately resonated with them:
An arrow can only be shot by pulling it backward. When life is dragging you back in with difficulties it means it’s going to launch you into something great. So just focus, and keep aiming.
They took it on as their mantra: They aimed and eventually, they won.
Right now, the battle against Hudson’s cancer is in her favor. Though they've been victorious, they know better than to think it's over. Though Hudson is currently in remission, she won't be considered "cured" until the five-year mark.
She missed a huge milestone in her son's life."I will never forget, to this day [when he said], 'I never had a 7 birthday party,'" Emily recounted in the project.
So for now for the Lillystones, it’s a waiting game. One inevitably fraught with varying levels of fear. "We’ll be forever changed," Emily told F*CK Cancer: A Mom Gets Real About Childhood Cancer. "With the checkups after treatment, we want to go, but there’s just that possibility of what if." Emily also admits to having this underlying fear of relapse with Hudson. And her fears are not unfounded. "We've seen kids with terminal types of cancer who have fought and fought and fought for much longer than we have," Emily told F*CK Cancer: A Mom Gets Real About Childhood Cancer. "It’s one of those things, you just know the shear agony of going through all of this and having it end the way it did. And not being one of the fortunate ones."
And while they grapple with their fears, they know part of life now is moving on from cancer in many ways. They don’t have to be on hold anymore and they can get back to the things they were doing before Hudson's diagnosis. They can look forward to and plan for new experiences, like taking a family trip to England.
Part of getting on with life means making up for lost time, too. Emily said at one point that Charlie asked when she was going to start going to his games. "He said, 'You never come to my stuff,' and that’s heartbreaking. I think we forgot about Charlie. You get so focused," Emily told F*CK Cancer: A Mom Gets Real About Childhood Cancer. There's also the fact that she missed a huge milestone in her son's life."I will never forget, to this day [when he said], 'I never had a 7 birthday party,'" Emily recounted in the project.
"This year he had an awesome birthday, [so] I don’t wanna hear about 7 anymore," she tells Romper, laughing.
The other part of moving forward is taking action. Emily's currently very involved with the organization CURE Childhood Cancer and other childhood cancer organizations. She says childhood cancer is not rare and believes more research is paramount for all children. According to the American Cancer Society, cancer is the second leading cause of death in children aged 1 to 14 (after accidents). Approximately 1,250 children younger than 15 years old will die from cancer in 2016.
"The fact that finding a cure or doing research for childhood cancer is [receiving] less than four percent of national funding — to me, it’s kind of barbaric," Emily said in her interview with F*CK Cancer: A Mom Gets Real About Childhood Cancer.
According to the National Pediatric Cancer Foundation, only 4 percent of federal government cancer research funding goes to children. The site also noted that more than 95 percent of survivors will have significant health-related issues by the time they are 45 years old. Emily is undoubtedly concerned about this very issue. "Sure, a cancer might be 92-percent curable, but then what if we’re seeing these kids later in life having major issues with being more susceptible to other types of cancers or having long-term health side effects?" She added:
There’s no voice for childhood cancer; parents, yes, but kids aren’t rallying together and lobbying. They’re reliant upon adults.
If you’d like to join Emily and the thousands of other families who are desperate for better treatments and a cure, please consider donating to CURE by going to their website and clicking "donate." And to see the entire F*CK Cancer: A Mom Gets Real About Childhood Cancer project by Melanie Mercogliano and Sarah Hosseini, visit Melanie Mercogliano Photography.