Sweet and social Evie loves gymnastics and ballet. She enjoys making new friends and playing.
Leukemia was the “elephant in the room” that Evie’s parents never saw coming. Until the final few months before Evie’s official diagnosis of Acute Lymphoblastic Leukemia on February 20, 2023. Evie’s parents had no reason to believe Evie was anything other than the happy, healthy, exceptionally social and developmentally advanced 3-year-old girl she appeared to be. Evie had long since conquered potty-training at 18 months, she started speaking in complete sentences at two, was excelling in her gymnastics and ballet classes, and at winning friends everywhere she went. But then the fevers started.
Beginning in October 2022, and each month thereafter, Evie started getting exceptionally high fevers of 104+. The fevers seemingly came from nowhere and without any other symptoms – or even the normal symptoms like headache, shivering, feeling sick, or fatigue. The fevers would last a couple of days and then disappear. But then the fever would come back the next month and the next, and the next, each time staying around for a longer period of time.
In November 2022, Evie started complaining of leg pain that got so bad during the peak fever days that she could not walk. For a kid who will run and play until she collapses, Evie not walking was concerning. So, based on a nurse’s recommendation, Evie’s parents brought her to the ER. Unfortunately, this was during an outbreak of RSV, so Evie was seen in one of the emergency tents set up outside the hospital. The ER doctor chalked Evie’s symptoms up to a virus going around and considered performing an x-ray but decided that the potential benefit wasn’t worth the risk of Evie catching one of the other viruses going around while she waited around. A few days later, the fever went away, but then came back in December. By January and February, the fevers were lasting a week and Evie was not walking for several days at a time. Then Evie started getting random and unexplained nosebleeds. Soon, she could not make it through gymnastics or ballet without stopping because of pain in her legs, even when she did not have a fever. Evie’s Mom insisted it was time for more testing.
The symptoms that Evie’s parents listed off to Evie’s pediatrician were annoying, but not outside the realm of what most parents would expect to see with a toddler, especially one who spent most of her first two years of life in quarantine from COVID-19. Kids get sick, right? Some kids sweat a lot when they sleep; that’s not really unusual or weird. Sure, Evie looked a little pale sometimes in a certain light, but she never liked red meat and anemia runs in the family on her Mom’s side. The potential diagnoses also sounded routine: viral infection, bacterial infection, anemia, injury – except one: Evie’s doctor said, “Well, the elephant in the room of course is cancer.” Of course, when people say, “Elephant in the room” they mean, “The topic we all know is here, but everyone is afraid to talk about.” But, for Evie’s parents, “cancer” was never remotely something they thought was a possibility. One blood test later, the possibility started sinking in. A couple of repeat blood tests later, and there was no denying it – Evie had cancer.
Immediately after the results of the repeat blood test came in, Evie was admitted to the ER and scheduled for surgery to insert a chemo port in her chest the following day. Chemo infusions started only one day after that. Additional scans, including x-rays of Evie’s legs, showing several irregularities, further confirmed her diagnosis. It still did not seem real to Evie’s parents, even after she left the hospital. Thankfully, with the exception of one occasion when one of the chemo medications crushed Evie’s oxygen, briefly making Evie turn blue and making her parents lose all color whatsoever, Evie’s body tolerated the chemo well. Aside from that, and the hospital food, it certainly could have been worse. Evie could have been like one of the other kids on the floor with less favorable diagnoses who had not been outside their room in six months. Mercifully, the biggest problem, in Evie’s eyes, was boredom. The nurses and child-life staff at the hospital do their best, but there’s no denying that being in the hospital full-time can be really boring. You can only play so much “farm game” (Stardew Valley) with Dad on Nintendo Switch, color in so many coloring books, and watch every single Disney princess movie in the catalog so many times before the room starts to feel like it is closing in on you.
But Evie pulled through. After a week and a half in the hospital, Evie returned home to finish out the remaining few weeks of the month-long “induction phase.” At first, it seemed like the worst was over. But then the effects of the steroids started showing themselves in dramatic fashion. Initially, it was nice to see Evie’s appetite return to a healthy level. And then it was hilarious that Evie could not stop talking about food. Every single sentence she uttered had something to do with food or her next meal. Then it stopped being funny. Soon, no matter how much Evie ate, no matter how full and swollen her belly was, she would literally beg, cry, and then scream “I want food, I want food!” for hours. For Evie’s parents, it is hard to convey the gut-wrenching heartbreak and guilt that comes from denying your child food – even if you are doing it, literally so that they do eat themselves back into the hospital from overeating-related complications. The steroid-induced joint and bone pain, and the mood swings were no fun either. When the steroids first started, even in the hospital, Evie was an unstoppable force of enthusiasm, energy, playfulness, and socialization. As the steroids built up in Evie’s system, to see her suddenly no longer interested in Facetime calls with family or seeing friends and to hear her describe her own mood as “gloomy” was almost worse than anything else.
Evie ended up making it all the way to the end of the induction phase, but before she could find out if she achieved the first milestone of initial remission, Evie ended up having to go back to the hospital anyway after she spiked a fever. But it was in the hospital that she got the critical good news that she achieved initial remission. Her two-and-a-half-year fight is still far from over, but this was very welcome news.
Evie would end up going back to the hospital two more times before she reached the end of the next phase of treatment when she spiked (still-unexplained) fevers again. It was during that time that some neighbors recommended Evie’s parents contact Keaton’s Child Care Alliance. After Evie’s dad filled out the online form, Cassie from Keaton’s reached out almost immediately. Evie’s parents were immediately struck by the genuine caring and interest that Cassie showed in Evie and her situation. Cassie would eventually go on to connect Evie’s parents with various resources, hand-deliver a care package, play with Evie, and help Evie find some local safe-space events for kids like her. But the thing Cassie did that meant the most – was listen. Before doing anything else, Cassie texted and called Evie’s parents and listened to them tell Evie’s story, at their own pace. Evie’s parents were sure Cassie had heard (far too many) similar stories from parents about their child’s devastating diagnosis. Evie’s Dad said:
“On that first call, she made us feel like our story was the only one that mattered. We felt heard. No matter how many times I’m sure Cassie has heard the same story over and over, she let us just talk, tell her how we felt, what we needed, and helped us discover some things we never knew we needed, but ended up being invaluable to us.”
The genuine care that Cassie showed made itself evident in the care package she delivered. From the Minnie Mouse bubble machine to the Disney Princess wig/crocheted caps, every single toy was exactly in-line with what Evie’s parents told Cassie about Evie’s interests. Evie’s parents are also extremely grateful for the financial grant. Even with good insurance, the costs of treatment and other life adjustments can be very high. And the financial hit could not have come at a worse time for Evie’s parents. Evie’s mom is a first-generation immigrant, first-generation college graduate, and full time-mom to Evie. Evie’s dad is a first-generation college and law school graduate who has dedicated his career to conducting workplace civil rights investigations. Both have massive student debt. Evie’s Mom and Dad worked their whole lives to save up for a down payment on a house in Rocklin to escape the high cost of living in the Bay Area. For years they lived with their parents and raised Evie from her Dad’s childhood bedroom throughout the pandemic. They all but wiped out their savings to put together a down payment and begin furnishing their new home. They had not even lived in their house a full year before Evie’s started showing her first symptoms. Evie’s dad exhausted his vacation and sick days and took unpaid leave to care for Evie during the first two months of her treatment. Thankfully, Evie’s neighbors, friends, and even her gymnastics studio came together to help get them over the hump until Evie’s Dad could finally win his two-month battle with EDD for family leave benefits. Evie’s Dad still makes regular updates on the GoFundMe set up by their neighbors Marie and Alma.
Despite all the “pokes” of blood tests, surgery, port access, bone marrow biopsies, spinal taps, despite the intimidating CT scans, x-rays, blood transfusions, clinic visits, hospital stays, despite the exhausting courses of chemo, steroids, antibiotics, and side effects of the medications to control the side effects of the other medications, Evie has been EXTREMELY brave through it all. She gets up every day with a mischievous smile, delivers a warm “morning hug,” and talks about all the fun things she’s going to do that day. For a girl as social as Evie, it can be hard to remain in isolation due to a compromised immune system. For a girl as naturally curious and fiercely inquisitive as Evie, it can be hard to stay entertained and engaged with exclusively indoor activities and only Mom and Dad for company. But Evie refuses to let cancer keep her down and continues to put on a brave face every single day. She cannot wait to see her friends again and looks forward to making new ones as she connects with other Keaton’s families.
The hardest phase of treatment is coming up for Evie in July and August, where she will face some of the harshest side effects and strongest medications that will keep increasing in dosage over two months. What’s left of her hair is expected to completely fall out and some additional hospital stays would not be surprising developments. Evie’s dad will have to learn how to provide injections of chemo drugs at home four days a week for two weeks, and steroids will make their unwelcome return to the regimen. Evie’s dad will also have to take unpaid leave from work again during this next two-month phase and only two weeks will be covered by EDD at 60% pay. But Evie and her parents are resolved to fight this disease no matter the cost. And with the support of family, friends, neighbors, and Keaton’s – they’ll win.
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