The World’s Rarest Unicorn

Laila

The day we got Laila’s diagnosis she was in the room with the rest of our family. I made sure she had a place at the table because she wanted to be there. I’ve always treated her like an adult and after all this stuff that this kid has been through, she deserved to be sitting in that chair next to Dr. Bednarski and Dr. Warren. But that doesn’t mean that what she was about to hear was going to be easy. 

Dr. Warren had called me earlier to tell me the basic details about what they found. She told me, “Heather, we have found a rare genetic mutation in Laila … it’s called HLH.”

HLH, or Hemophagocytic lymphohistiocytosis (HLH), is an uncommon disease in the first place, but what really made Laila the world’s rarest unicorn, as we like to call her, was the fact that her manifestation was purely neurological. Her symptoms weren’t lining up with typical signs of HLH because the disease was affecting her central nervous system (CNS). 

Of course, when Dr. Warren said how rare it was my heart dropped, because my first thought was that not enough people would know how to treat it. But it also made some sort of sense that my one-of-a-kind daughter would be just one of 15 kids in the history of the world to be diagnosed with inherited CNS HLH. Both her father and I, unbeknownst to us, had a genetic mutation. By itself it was harmless. We never experienced symptoms or even heard of the disease until Laila received her diagnosis.

Our whole family went to St. Louis Children’s with us. We were all there in that room together to support Laila, and there was almost a sense of relief in finally knowing what it was. The code had been cracked. But that was quickly swallowed up by understanding what came next. 

Laila needed chemotherapy, then a bone marrow transplant and she would have to go through months of isolation while they completely wiped out her immune system and replaced it. Truthfully, you don’t hear much after “chemotherapy.” Or “bone marrow transplant.” After those words were mentioned, the room felt like it was getting smaller and smaller and everything grayed out for a while. I never let myself believe that this could be a fatal diagnosis. How was I going to explain this to her? How on earth was I going to tell her everything would be okay when I could barely stop myself from breaking down?

When she heard she was going to lose her hair, Laila started to cry. She had the most beautiful, long blonde hair and for a 10-year-old kid. Being told that it’s all going to fall out … that’s hard. It felt real then. I was at a loss for words. Saying, “It’s all going to be okay,” felt so empty. I held her as she cried and tried to keep my own emotions in check so I could be strong for her. 

But then she did what she does best: she surprised me. After a minute or so of crying, she wiped her tears and sat up straight. Dr. Warren and Dr. Bednarski gently started to walk us through everything they were going to have to do to help Laila, and I’ll never forget what she did. 

She looked straight at Dr. Bednarski and said firmly, “Let’s do this.”

And so, we did. 

Despite having an extremely shocking diagnosis, Laila seemed to just be okay with it. At first, I thought maybe she just doesn’t understand, but maybe she’s just going to do this. And if Laila is okay, I have to be okay. If she’s going to be strong, then I’m going to be strong. 

That never-quit attitude is what really makes her the world’s rarest unicorn and she continues to amaze me every single day. 

Until next time,
Heather

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Previous Journal Entries

Journal Week Four: “With all due respect, my kid doesn’t get nervous.”

Laila in the hospitalReflecting on Laila’s medical journey can sometimes be bittersweet. On the one hand, we can see how far she’s come and how many people she’s inspired along the way. But it also reminds us of everything she had to go through to get to this point. 

I wasn’t with her the first time she started showing symptoms. My parents had taken her out to lunch while I was at work when she started complaining of a headache. As a parent you think, “How does she even know what a headache feels like at nine years old?”

Then the vomiting started. I left work as soon as my parents called me to say they had taken her home. Initially, we all thought it must have been a flu bug that she had picked up from another kid at school. But the strange thing was, she was physically awake, but her reactions to things were delayed. Or it was almost like she didn’t even hear me. I tried to give her some medicine to calm her stomach and she would just start throwing up again. Even popsicles wouldn’t stay down. She was sick all night. And then the next morning … everything was fine. 

While things seemed to go back to normal, something just didn’t sit right with me. For one thing, I couldn’t help but notice that she was losing weight. She was nine years old and wearing size six or seven clothes. At the time I just considered that maybe she's just a really tiny gal or hasn’t hit her growth spurt yet. But in the back of my mind I just knew it was something more. 

A couple of weeks later, it started again: the headaches, the vomiting, the blank stares. It was terrifying to see my daughter, completely awake and yet unresponsive. The tipping point was when her dad was taking her to school and her arms and legs stopped working. She got out of the car to take the bus and it was like she was falling asleep with her eyes open. She couldn’t move and would just stare off into space no matter how much you called to her. Her dad called me to tell me what was happening and I told him to take her to an area emergency room — I would meet him there.

Without too much else to go on, her very first diagnosis was dehydration. The doctors kept asking her questions and she didn’t know the answers to them. And I knew my kid knew the answers to those questions. The doctors said that maybe she was just nervous. And as Laila’s mom, I knew that was not the case. I just slowly shook my head and said, “With all due respect, my kid doesn’t get nervous. Something is not right.”

So while we knew it wasn’t something as simple as being dehydrated, there’s no way we could have known how long it would take to find the answers to what was really going on. For a few months, the sickness would come and go in waves. Each time she recovered I started to hope that this would be the last time and that everything would magically fix itself overnight. But when I came home one night after work and found my dad crying in the bathroom while Laila was throwing up in a bucket in the tub, I knew that this was the start of something much bigger.

My dad steadied his voice and said, “We’re going to Children’s.”

We scooped her up and took off. Within 15 minutes of being at the hospital the doctors knew that there was something wrong with Laila’s brain. They even had her do a coordination test (like the ones for drunk drivers) and I couldn’t believe it. She couldn’t do any of it. 

These symptoms were the beginning of Laila’s battle with HLH, and although it scared me beyond belief, I felt confident that Children’s would do everything in their power to help my little girl. And I was right. I feel so fortunate to have them with us still. I wouldn’t want Laila’s life in anyone else’s hands, and I knew that from the start. 

Until next time,
Heather

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Journal Week Three: Taco Girl

Laila in taco costumeWhen I was a kid, Halloween was one night. October 31. Rain, shine, snow, or beautiful weather – as soon as dusk hit, you grabbed your pillowcase (or biggest bag you could find) and you took off roaming the neighborhood for hours, getting as much candy as possible. Nowadays, Halloween has become more like a two-week holiday for kids! 

When I think back through all of Laila’s Halloweens I think last year takes the cake as hands down the best. Halloween. ever.

I say this even though at the time we had just found out that Laila needed a bone marrow donor match. So instead of being busy with trunk or treats and Halloween parties, we were busy searching for a donor and preparing her little body for transplant.

Halloween morning, Laila actually had to go into Children’s for a treatment. The thing that got her through that was knowing that she was going to get to go to Stifel Theatre for a trick or treating party with the Blues.

Through all of our hospital visits and stays, our family had gotten very close with one of the St. Louis Children’s Hospital Foundation staff, Whitney Kohlmeyer. Whitney (we call her Santa) is the Grateful Patient Ambassador and works with families at the hospital who want to share their child’s story, or are willing to go to events and represent Children’s. With the hospital’s partnership with the St. Louis Blues, the Blues had asked Whitney to invite patients to come to a trick or treating event. When Whitney asked Laila if she wanted to go, she kept the details brief but said she had been before and it was a really fun time. Whitney knew that Laila was such a huge Blues fan so she told us we had to be there.

The kids were supposed to dress up, so, of course, Laila went in her infamous taco costume. I say infamous because she had also been a taco the year before in 2017. She wore it to a Blues game and fist-bumped all the players as they came out of the tunnel. She loved doing that and it’s the perfect example of who Laila is as a person: the silly taco costume and the enthusiasm for encouraging everyone around her to do their best. 

But this night in particular, after she fist-bumped her boys, I looked up and saw my daughter on the jumbotron! You could see her mouthing “Let’s go Blues!” on the screen. What we didn’t know at the time was that the players had apparently taken note of their good luck charm – Taco Girl.

Back to 2018, a few games before Halloween, Laila wore her taco costume to a Blues game once again but this time she brought with her a handmade sign (that she worked very hard on) that said, “Hey Colton, can the taco get a stick?”

After the game ended, Colton handed his game-used hockey stick to Laila. It meant everything to her.

So when it was time to head to the Blues Trick or Treating event, she of course had to wear her costume that her boys would recognize her in. So, once more, Laila rocked her taco costume.

When we arrived that afternoon at Stifel Theatre, Whitney and the Blues staff welcomed us and took us upstairs where we were greeted by Louie. Laila and the other 15 or so Children’s Hospital patients there with her were all so excited. When Louie opened the doors to this big room, there was the biggest surprise of all. The entire Blues team, their families and front office all totally decked out in costume! I will never forget Laila’s reaction she saw Colton was standing right there. And the first thing out of his mouth when he saw her was, “Look! It’s Taco Girl!”

Everything about this event was amazing. There were all different tables set up for the kids to visit, along with games, candy and so many awesome prizes. I’m talking sticks, bobbleheads, pucks – basically any Blues paraphernalia you could want. And all of the kids were getting these from the players themselves. It was such a neat experience to witness.

Colton was completely devoted to Laila the entire time. He would carry her basket, her water bottle and go to each candy station with her. It almost made me feel bad that he was spending all of his time with her. But when I told Laila to let Colton go and see the other kids, he looked at me and said, “It’s totally fine, Heather. I’ve got this.” 

I remember I sat down at the back of the room and cried happy tears. At first, I wasn’t sure if the Blues organization, especially Colton, realized just how much of an impact they were making on Laila’s life. But as I watched Laila and Colton get to know each other, I started to understand why he was helping her. He knew she was special. She had worked her Laila magic and the two instantly became the best of friends.

Laila got to meet her best friend that day. And she got to be a kid – with no worries about anything medically that was going on with her. Yep, best. Halloween. ever.

Sometimes I look back and wonder – would she have gotten the opportunity to go there if it wasn’t for Whitney taking the time to learn about Laila and how she is the world’s biggest Blues fan?

And I know it wouldn’t have been possible without the Blues partnership with St. Louis Children’s Hospital. The Blues believe in Children’s and are dedicated to their mission to do what’s right for kids. That’s why they host amazing events like Halloween trick or treating parties so the kids receiving treatment can be distracted from their illnesses for even one night and just be a kid again. And that, along with countless other reasons, is why we are using this platform to tell Laila’s story and give back to the place that has done so much for us. 

I hope you will consider joining Laila, the Blues, and me in support of St. Louis Children’s Hospital so that more kids can have experiences like the one Laila had at Halloween last year.

Happy Halloween!!

Until next time,
Heather

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Journal Week Two: It was about the Dippin’ Dots

Laila

Throughout our journey, we often get asked when Laila became a Blues fan.  We have found that there is often a misconception that she became a fan while she was sick. But that isn’t the case. People are shocked when they find out that Laila has been a fan “since birth” as she says. 

Laila’s dad is from Minnesota and I had my own hockey upbringing here in St. Louis. Some of my earliest memories were going to the old Checkerdome and watching games with my dad.

Laila’s dad and I both took her to a game when she was little, hoping she would love hockey as much as we did. Which she did! But I will say – early on the thing she loved most of all about going to the Blues games was the Dippin’ Dots. She always had to have Dippin’ Dots.

That feeling of cheering on a professional team in her hometown stuck with her. We went from going to games every once in a while, to partial season tickets, to full season tickets. Today, she knows more about the Blues than any other person I know. It’s like her job, and she’s only 11 years old! We have moved past the Dippin’ Dots and Laila’s thing now is – she has to be the first person in her seat. She likes to sit down by the tunnel and fist bump the players as they come on the ice. Games have gotten extremely long for us since we get there 2 hours early!

When she got sick, we leaned back on our love of hockey. Things were the toughest they’d ever been for us, but when a Blues game was on, all of our troubles seemed to disappear for a little while. For two hours, all that mattered was that her boys played the best game they could. And it seemed like the Blues and Laila were almost fighting for each other. Right around the time the Blues started to turn the season around and get better…Laila got better. 

And the cherry on top of this parallel fight and dual victory? Meeting Colton Parayko and some of the other boys. It was a dream come true for Laila. And true to form, she won them over. She treats them like her best friends. Because they are. 

This last Blues season for us (and so many other Blues fans in St. Louis!) was the best yet. It was such a whirlwind for the Blues going from last place to first and the same goes for Laila’s health. She went from being in isolation after her bone marrow transplant to being on the ice after the Blues won the Stanley Cup. The excitement of it all didn’t end there either. Our family got to be a part of the parade, and we were invited to join Pat Maroon and his family on his day with the Cup. My goofy kid even ate t-ravs out of it! Laila’s name was inscribed on the players’ rings and Alexander Steen and Colton Parayko surprised Laila with a ring of her own. I could go on about how great these boys and the Blues organization are. They have embraced us as family and we are so grateful for the relationships that have been built. And, we are so proud of the Blues for bringing home the best trophy in sports!

As the first game of the 2019/20 season approached, it was a bittersweet feeling. We were closing the door on a roller coaster hockey season – and health journey for Laila – and gearing up for a big unknown of what is yet to come. My Blues-loving daughter stood during the opening ceremonies before game one with tears pouring down her face. It was a really neat moment where all at once, we reflected on everything that had happened over the last year, and felt optimistic and excited about what is yet to come. 

For Laila, everything is about the Blues. She’s been there from the start when no one in St. Louis knew who Laila Anderson was. She loves this team. She loves hockey. She always has. And she always will.

Until next time,
Heather

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Journal Week One: Raising a Fighter

Laila and HeatherAs parents, we all know our kids are special. I knew from day one that I had a particularly special one. Laila has always impressed me — in her 11 years, I’ve never seen her nervous around anyone. Not even a tough 6’6” hockey player. She’s fearless and I admire that about her. I’m lucky to be her mom.

I’m Heather, a mom just taking each day as it comes, working hard to raise my unique and spunky daughter, Laila. When she was little, my worries for her as her mom were things like, “Will she do well in school? Will she make friends?” I wondered what sports or activities she would thrive at, what she would want to be when she grew up. I expected that my biggest challenge as a parent would be molding her into the kind of person we all strive to be, but that all changed when Laila was just 9 years old.

That’s when she started showing symptoms of what was ultimately diagnosed as a rare immune disease, Hemophagocytic Lymphohistiocytosis (HLH). I remember feeling so many emotions during this journey starting from when we discovered she was sick to ultimately finding a diagnosis. But we’ll get into more of that later.

Another thing we parents do…we worry. I worried what would happen next. I worried about how she would respond to the obstacles she would soon be facing. To be honest, I even worried about myself. How would I stay strong for her? That was my only job, you know? I needed to make this whole process less sucky for her.

But, in true Laila fashion, she stayed positive no matter what challenge, surgery or treatment came next. She made me stronger. I found allies in many other parents, grandparents and caregivers who were all doing the same thing for their kids as I was for Laila: fighting every day to make sure my kid was being taken care of, looked after and given every chance at life inside and outside the hospital walls.

Soon, what makes Laila special became clear not just to her dad and me, but to everyone around her. Many people know the story of Laila’s fight against HLH, mostly because of her parallel journey with the Blues’ quest for the Stanley Cup. Those players are her boys. I truly believe they fought for each other. 

This whole experience with the Blues and gaining national publicity has been a whirlwind for us. I originally recorded Laila finding out she was going to Game 3 of the Western Conference Finals to send to my dad! I never could have predicted the kind of attention it would get from there.

A lot has transpired in the last year with Laila’s health: we confirmed her diagnosis, learned of the need for a donor match, spent 100 days in isolation away from school and her friends and experienced the brutal side effects of chemotherapy, steroids and 40+ pills a day. But then Laila was standing on the ice with her boys after they won the Stanley Cup for the first time in history. We’ve had the highest highs and lowest of lows, but all throughout our journey we have been overwhelmed with gratitude for the outpouring support we received from the St. Louis community and the country. Laila’s story becoming national news was something we never could have anticipated. 

This past year, Laila and our family have been given a very rare opportunity. We now have a public platform and we’re determined to use it as a chance to make a real impact.

When it comes to Laila’s journey with HLH, it’s not over yet. While she is doing well today, we don’t know what tomorrow will bring. What we do know is that we are thankful to have our friends and family as our support and to have St. Louis Children’s Hospital. Because that place gave Laila a second chance at life. 

As a result of these experiences, we’ve had some of the best memories and Laila has been able to just be a normal kid. She’s worked so hard to be where she is today and to be happy. As her mom, it makes me so happy to see that. 

Laila believes her fight against HLH can inspire other kids and patients like her to keep going. And as someone who is inspired by Laila every day, I agree with her. That’s why we want to tell Laila’s story through “Laila: The Next Season.”

I hope you will join us in learning about Laila’s side of the story through these journal entries and, ultimately, the documentary. Every week throughout the rest of the year, I will be sharing a new journal entry reflecting on Laila’s last season and keeping you up-to-date on her next one. 

Until next time,
Heather

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