11-year-old twin sisters battle leukemia
Jackson — In June 2013, when she was 8 years old, Lily Dove turned gray.
She hadn’t been feeling well. Ordinarily robust and athletic, she had become lethargic and, from time to time, sick to her stomach. Initially, her mom, Erin, figured Lily caught a bug. But then color seemed to drain from Lily’s cheeks.
Erin has told the story of what happened next many times. Telling it again makes her cry.
Erin took Lily to their pediatrician. Lily’s two sisters came along: Lily’s identical twin, Bailey, and her older sister, Maddie, who was 10.
The doctor thought that, perhaps, Lily was anemic, and she ordered blood work. It took about an hour. And when the results came back, the doctor suggested that Lily join her sisters in the waiting room so she could talk, one on one, with Erin.
That’s the memory that still stirs Erin, that moment she sent Lily to the waiting room. She and the doctor talked. At the beginning of the conversation, Erin was one person, and at the end of the conversation, she was someone else. In the course of those moments, life as she knew it changed.
Lily, the doctor told her, had leukemia.
***
Children’s Hospital of Wisconsin is just west of Milwaukee, about half an hour south of Jackson. Within a few hours of the visit to the pediatrician, Ryan Dove was driving there, with Erin seated beside him and Lily, packed for an extended stay, in the back.
A song came on the radio and Lily, innocent, sang along. It was “Cups”:
“When I’m gone, when I’m gone
You’re going to miss me when I’m gone
You’re going to miss me by me hair
You’re going to miss me everywhere, oh
You’re going to miss me when I’m gone.”
Ryan remembers thinking, as they drove down the interstate, that Children’s Hospital was kind of an abstraction to him. He had noticed the building. But he hadn’t ever given it much thought. That massive building. All those windows. All those lives behind those windows. He and his family were about to become one of those lives.
He remembers thinking:
“Now is my time to be a rock.”
***
Lily was diagnosed with acute lymphoblastic leukemia, a fast-growing cancer — without treatment, it can kill its victims within months — in which the bone rapidly produces immature white blood cells that not only fail to fight infections very well, but at the same time crowd out the bone marrow needed to produce normal blood cells.
It is the most common type of childhood leukemia, which in turn is the most common of childhood cancers. At Children’s Hospital, behind all those windows, Ryan says, “We began to find out how rare it isn’t.”
While the prognosis for childhood leukemia is good, treatment is brutal and takes years.
Chemicals developed to kill adult cancers are pumped through a port planted in a child’s small chest and infused through lumbar punctures. While researchers hunt for less toxic drugs, two-thirds of kids treated for leukemia suffer serious, life-altering side effects.
They face months of nausea and fatigue. Missed school days and friends that drift away. Sudden fevers and middle-of-the-night trips to the emergency room. Bald heads. Delayed holidays. Pokes. Sticks. Blood draws. The discomfort of being different from all the other kids.
Children with leukemia learn grit. They have to be tough and brave and stoic and a dozen other things, however admirable, children shouldn’t have to be.
Lily had the benefit of a loving family, devoted friends and a supportive community. You’ve probably heard about million times that these things matter. The thing is, they really do. You’ve also heard the idea that people “battle the disease.” But it really is a war. In Lily’s case, the point of fighting that war was not to just keep cancer from killing her. It was also to keep cancer from destroying her life.
Lily’s army identified themselves with orange wrist bands. The bands said:
“Fight like a girl.”
***
In the spring of 2015, with the end of Lily’s treatment in sight, Bailey told her parents that her bones ached.
Ryan and Erin had known from nearly the day of Lily’s diagnosis that Bailey, as Lily’s identical twin, had roughly a 1 in 5 chance of developing leukemia.
They had shoved that fear aside.
But within days, on March 7, the very thing the Doves could not bear to contemplate shoved back.
“Hard to breathe,” Erin wrote in her online journal.
“We are overwhelmed, heartbroken, sadden and angered by the news we received this weekend. Our sweet, selfless Bailey has been diagnosed with leukemia.
“Lily’s journey brought tears of fear and the unknown. Now we are crying tears of anger, ‘why,’ and the known.”
***
That question — why? — gnaws at Erin.
One Sunday, the scriptural passage discussed at Erin’s church was one of her favorites, Romans 5: 3-4:
“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”
In her journal, Erin wrote:
“There was a lot of discussion about our trials and sufferings being those things that ultimately shape us. For ourselves. In our relationship with others. In His plan for us. And how a lot of people do all they can to avoid trials, run from anything that would cause suffering.”
Her family never had that choice, Erin wrote. Suffering, years of it, has been their lot.
“I hope that someday we will know why,” Erin wrote.
“Why our family. Why twice. Why do some families seemingly coast through without a ‘big’ trial. Why do too many lose their child to this disease. It’s hard for me to try to comprehend that we may never know. I WANT to know.
“Sufferings. For now, one foot in front of the other in the day to day.”
***
Why?
Who can say?
“We’ve had people tell us that you may never know why,” Erin said recently.
She was sitting on a couch in the Doves’ family room, with Lily on her right and Maddie on her left. It had rained that morning, and everything outside seemed especially green and promising.
“The biological answer is, our kids were just unfortunate to have the biology that put them at risk for this disease, and they got it,” said Ryan.
Seated on his left was Bailey.
Bailey, who is expected to finish her treatment in June 2017, had endured a round of chemotherapy the day before and her cheeks seemed flushed. Her hair was growing back, very soft, brown and curly.
“Why — on a more personal, family level — I guess could be about perspective,” Erin said.
“We try to not sweat the small stuff, realizing what’s important. It has also helped us figure out who we want to surround ourselves with, who our big supporters have been, supporting us at all different levels, whether it bringing us meals, or sending a late-night text that they’re thinking about us, or things like that. You realize what and who is important to us.”
Ryan said: “Ever since the kids were born, I thought of my myself as the sole provider. And I thought that sole providers work — and work a lot — to support their family. There are a lot of different events that I’ve missed. Talent shows. Winter carnival shows. All sorts of things. Because I thought that my job is to make sure I could provide for them.”
Perhaps part of the why of Lily and Bailey’s illness has been “sending the message of perspective — saying, ‘You’re missing out. And here’s something you now need to deal with, to learn that perspective.’ ”
But Ryan and Erin said they would happily trade whatever wisdom they’ve gained if they could have spared Lily, Bailey and Maddie these years of suffering.
Whatever meaning the Doves might find to give context to Lily’s and Bailey’s illnesses, they have sought in their journey opportunities to contribute to the greater good.
They seek venues in which to tell their story, hoping to broaden awareness of childhood cancers and the need for less toxic treatments.
And they raise money for research.
“Awareness means we have to support the organizations that are trying to help,” Ryan said.
Ryan is the director of information security for West Bend Mutual Insurance Co., which after a fundraiser earlier this month, presented Lily, Bailey and Maddie with a ceremonial check for $644,398 that is to be donated to the Midwest Athletes Against Childhood Cancer Fund.
“We will always be supporters of these groups because some other parent was that for us. We now feel like it is our obligation to do that for the next person,” Ryan said.
“It doesn’t help our kids. None of the $644,000 raised by West Bend to give to the MACC fund will assist our kids. But it will assist someone else’s kids. And we feel we owe that to someone.
“Somebody before fought for us. Now we are fighting for them. Is that the ‘why’? I don’t know.”