Phenicia Koicuba lives in San Antonio, Texas, where she is a single mom to Gabby, 17, Sophie, 10, and 7-year-old Livvie. When Phenicia was 11 weeks pregnant, she learned the child she was carrying had Down's syndrome.
“That was the beginning of a little bit of a whirlwind,” Phenicia remembers. “I knew nothing, but I'm a researcher, so I started diving in to learn what I needed to know about this new bundle of joy.”
And sure enough, when Livvie was born, she was indeed a blessing in all of their lives. But there was also a lot that came with her diagnosis that her parents weren’t prepared for. The therapy... the specialists... And Phenicia wanted to do everything she could to be sure that Livvie had as many tools as possible to face the world and do well in life. She and her other two daughters learned sign language right away, wanting to help her overcome any communication barriers.
Phenicia was also working full-time as a financial analyst. And she shares that all of these things combined to put a strain on her marriage.
“And it all was just a bit much, and it kind of all took a toll on my marriage,” she relates. “And so, by August of 2017, I had separated from their dad, and the girls and I moved into a pretty small apartment. It was supposed to be a temporary kind of deal for us to find a house. It was very scary and very unsure of the future, but it felt like the right move at the time. It was just a difficult time for us all, really.”
But the challenges were just beginning for the Koicubas. They had just moved into their apartment and the girls were starting school. Her middle daughter, Sophie, was starting kindergarten, and because she had never been to daycare before, Sophie started picking up all the viruses right away.
“The month of September was just this crazy, chaotic month with sickness cycling through all of us,” Phenicia remembers. “We had a small apartment, so we all got sick. I guess in hindsight, I should have noticed that there were a few things Livvie was experiencing that were different from the rest of us.”
At the end of September, Phenicia noticed a Petechiae rash on Livvie’s ankles, which can be a sign of leukemia. Because of all the research that Phenicia had done on Down’s syndrome when she was pregnant, she knew that children with Down’s have a much higher risk of developing leukemia.
The red flags were going off for Phenicia, so when a couple of days after that, Livvie couldn't stand up on her legs or bear any weight, Phenicia knew her hunch was right. She took Livvie to the ER where the blood counts confirmed her suspicions that something wasn’t right. The next day, they referred Livvie to an oncologist, who scheduled her bone marrow biopsy within a day or two.
“And when we got those results, he said, ‘Pack your bags. You and Livvie are going to be in the hospital for 35 days, and you're going tomorrow,’” she shares.
And sure enough, they were there for over a month, especially as Livvie suffered from a terrible abscess in her diaper area after severe diarrhea caused by all the steroids and chemo meds.
“She was in immense pain,” Phenicia recalls. “So we were there for the full time, waiting for her to fully heal from that as well before they would discharge her. It was the longest month of my life. The longest month of her life—that I don't think she remembers, hopefully.”
When asked how she managed all of this as a single mom, she speaks frankly. “It was just a punch in the gut. I didn't really know which way I was going. I knew that I would need to take a leave of absence from work. I immediately turned to my sister—she was really close to my girls. And she and my niece came and stayed at our apartment for that month, and I am so grateful for it. Because I just wanted them to have some sort of consistency and stability.”
But despite her hopes and efforts, the separation was hard on everyone. Her youngest child had never spent a night apart from her mom before the month-long hospital stay. And both girls were worried about their sister.
“And it was just so fast,” she explains. “When things happen that fast, you don't really have a chance to process it. and I don't think any of us really did. We got to the hospital, and it didn't occur to me that I would rarely see my other two during that month. I didn't have time to process that or really think about that. I remember being on the phone regularly with my older one, helping her with her homework. She would send me pictures of her homework and we would talk through it. My middle one would be in tears.”
Because Livvie was also diagnosed with rhinovirus, she had to be isolated from her younger sister, and she and Phenicia were confined to their room during the stay.
“It was extremely isolating and a scary time for all of us,” Phenicia says.
On top of all this, Phenicia’s demanding job wasn’t mixing well with having a child with medical needs. After the initial hospital stay, Phenicia tried to go back to work. But just a couple of weeks later, Livvie got RSV and landed back in the hospital for a couple of weeks. Phenicia returned to the office again, but she remembers how strange it was.
“I think that people who aren't in this world who haven't experienced this, don't know how to react,” she explains. “I think a lot of them felt like, ‘Okay, you're over the hump. She's out of the hospital, things are better.’ Additionally, I still had the same expectations for my workload and from my management, and it really wasn't going well. Livvie was having three to five appointments a week at clinic, which I was taking her to. At some point, you run out of all sick time. You don't know what you're going to do. At the same time, I was starting to battle chronic migraines.”
Eventually Phenicia had to take an extended leave of absence. This was hard for her—she loved her job—but she knew she didn’t have the brain power to be present and do a good job at that moment.
She is thankful they didn’t have numerous in-hospital stays, which she credits to Livvie’s oncologist who would go to extreme lengths to avoid in-patient stays. This did mean, however, that mother and daughter spent countless hours in the clinic between all the treatments, spinal taps, and bone marrow biopsies.
“I was actually in the room for almost all of her spinal taps and bone marrow biopsies,” Phenicia shares. “Until it reached a point when her oncologist looked at me and was like, ‘Mom, this is hard on you. We've got this.’ But you know, it's terrifying to leave your child's side for any of it.”
Phenicia speaks with frustration about the lack of help offered to her initially upon Livvie’s diagnosis.
“I really think there should be a hand holder assigned to a parent when this happens that says, ‘I will be with you through the end of this, and I will help you,’” she suggests. “You are just bombarded with information right away, and I was the only one there with Livvie. So, I am trying to take care of my toddler—who at this point has tripled in size because of the steroids and is absolutely miserable—and I'm standing by her bedside day and night, and then I'm trying to understand the diagnosis, the prognosis, the protocol. What does it all mean? I appreciate the nurses, the staff, the oncologists. They all tried their best to give me the information that I needed. But in that state of mind, especially as a single mom, you're juggling it all. And not just the medical understanding of it, but also understanding how you're gonna manage it.”
Phenicia initially had her insurance through her job, but after the overwhelming copays and then not having any income after leaving her job, she ended up on Medicaid.
“I found out later that there's a social worker at the hospital who is supposed to help you with this stuff,” says Phenicia. “Unfortunately, I did not have that information early on. So, I spent my nights when Livvie was asleep, when my girls were at home asleep, just digging and researching. You know the footwork is a lot to find these resources. Fortunately, there are a lot of resources out there, but it takes a lot of time and effort to go through to find out what applies to your situation. These applications can be really lengthy, confusing, pulling in all sorts of documentation, not knowing what documentation you need... It was a lot, but yeah, I did most of it myself. So, it was a lot of long nights.”
Phenicia speaks with emotion as she reflects upon the guilt she experienced in feeling she couldn’t fully be there for all three of her daughters the way she wanted to be.
“I felt like I wasn't able to fully support all of their needs the way that I'd always tried to in the past,” Phenicia laments. “As moms that's what we do—we band-aid the boo-boos, we get the homework done, all the meals... I just couldn't do all of that. And that really did break me. It's something that you try to push away, you try to deny that it's happening but then when you're faced with it, you realize, I can't do it all. And then you just have to accept the guilt that, as a mother, you're dropping the ball in a lot of different courts. I didn't get to go to field day with my kid... I didn't get to do this with my kid... You want to keep that normalcy for the siblings, and it's almost impossible.”
When she tries to speak about giving herself grace, Phenicia breaks down in emotion. But she recognizes that she did do the best with what she had.
“My kids, they're doing well—I just want to be so much more for them,” she explains. “And I feel like we still have a long way to go. Here we are, so far out of it, and there are the residual effects of all of it that we're still dealing with. I'm still not working. I have a child who's doing homebound learning because her immune system continues to be shot. She's still doing monthly infusions. There's still so much that we're going through. I've kind of pushed it all to the back, so I don't really have to deal with it, but I'm still struggling.”
Thankfully, in January 2020, Livvie officially got off treatment. She does, however, still have to report in, and she still goes in for monthly infusions. And of course, there are multiple specialists, thanks in part to the side effects of the chemo.
And then there’s the fear of relapse.
“That fear kind of lingers forever in your mind, no matter how much you try not to think about that,” Phenicia explains. “She catches every virus, and it lasts forever. She gets sick, and a month goes by and she's still sick. And on top of that, she still has special needs. I feel terrible that she's never been around her peers. She's never gone to a recess. She's never had P.E. She's never experienced the kind of things that your typical child experiences. It’s not just over when treatment ends.”
Thankfully, despite being a single mom, Phenicia has in no way been alone in the struggle. One of the first phone calls she made when they went into the hospital on that first day was to her church. She speaks with gratitude of the outpouring of support her family received right away from a couple of local churches, describing it as “amazing” and “mind-blowing.” The support came in the way of friendship—”I've really developed some lifelong relationships from people that I met on that day or soon after that day,” she says—but also in financial provision.
“When I look forward to the future—financially, how are we going to make it, how are we going to survive—time and time again, even down to the wire, God has always, always provided,” she expresses. “A lot of it has been through these local churches, several Bible study groups, connections I've made through Lighthouse... The way that God works is really just incredibly beautiful and touching. On two different occasions, somebody has just shown up to my door, somebody I didn't know, from the church, and handed me an envelope of money, right when I needed to pay rent. It's just a testament to the way that God works in our lives. It's a reminder for me constantly that when things are hard, which they frequently are, to just have that faith.”
Now that she’s looking back on how things have gone, Phenicia would encourage anyone in a similar situation to “take the help”—advice she also received on the day of diagnosis from a fellow mom.
“In the very beginning, you are kind of surrounded,” she explains. “People just rally around you, especially in those first few months, and for us moms, especially single moms, we're used to juggling everything on our own, and it's hard. It's hard to break down that wall and to accept the help. But accept it. If somebody wants to help so you can take a nap for 30 minutes, take the help.”
“Also don't feel bad or embarrassed or sad about not understanding it all in the beginning, or even six months or a year into the journey,” she continues. “I've heard other families that have such extensive knowledge of their child's medical diagnosis, and all that surrounds that. And too many times, I kicked myself because I'm like, I should know this. And it’s gonna hurt Livvie in the long run because I don’t know all of this. I don't know everything. And it's okay not to know everything.”
She also adds some relational advice for anyone on the childhood cancer journey.
“Another thing that really hurt in the beginning is that a lot of people that I did not expect just disappeared from my life,” she shares. “And I found out later on, that is not unique to me. It's very common. It's a strange phenomenon, but it's very common. My advice to other moms is when that happens, don't take it personally, don't hold on to that hurt. You will forge new bonds with people that are going through this journey, and just cling to those, because they are what will get you through.”
To hear more of Phenicia and Livvie’s story, listen to Phenicia’s interview with Chris and Christy on The Lighthouse Podcast!