We want to hear Brooklyn's name.

Trolls, Springsteen, Justin Timberlake. The Beatles – she loved the Beatles.

We played Yellow Submarine every morning on the way to radiation. She’d sing from the back seat.

She always knew when the trumpet part was coming. She loved the trumpet.

And that kid never met anybody she didn’t love. She taught me patience – which I have zero of. I lost my cool a lot, not at her, but for her. She sort of taught me, like, “Hey Dad, just take a breath.” I never thought the greatest teacher I’d ever have would be a two-and-a-half-year-old.

One night in April 2023, we noticed her left eye wasn’t focusing. It was deviated. Both of us being in the medical field, we knew that lazy eyes don’t show up that fast, but we were hoping it was something simple.

There had been some other early signs a month prior, too, that we later learned were related – unusual fatigue, tantrums (she hadn’t had a tantrum up until that point), and stomach bugs. We had just started taking her places because of COVID, so we figured her immune system was playing catch up. But that night when I saw her eyes were deviated, I quickly remembered the time where she was projectile vomiting and it flew across the room – it wasn’t normal. At that moment I truly thought to myself, there’s something in her head.

We already had an appointment with the pediatrician scheduled, because she had diarrhea earlier in the week and we wanted to be safe. So when I took her in for that appointment and showed them her eye, they sent us for bloodwork.

The next day she started tilting her head, trying to see straight. It quickly got worse. That’s when we got concerned. She was still walking, but something was very off.

I started calling eye doctors, but everyone was booked. Finally I found something at Nemours Children’s Hospital. The doctor there asked if I noticed she had a facial droop. I hadn’t. I felt awful. She could tell I worked in healthcare and asked if I was a nurse. “Do you know what cranial nerve six is?” I said yes (it’s one of the nerves responsible for motor functions of the eye). She brought in another doctor to confirm. Her vision was fine, but they both agreed it was CN VI palsy, which we later learned can be a symptom of the more aggressive form of DIPG. She asked Brooklyn to walk, and her gait was off. So she sent a script for an MRI and said they’d call in 24 hours.

After she sent in the script, we left. Ten minutes later she called and said, “Go to the ER. She needs an MRI now.” So we took her. She needed sedation but there was no anesthesiologist available, so she was admitted overnight and was the first case the next morning. The scan was supposed to take 30 minutes. It took 90.

When an MRI takes that long, you know they found something.

I was still hoping it was operable. Then the neurologist came in and said it wasn’t.

The neurologist came in with a whole team – the first bad sign. He didn’t even address Brooklyn at all, which infuriated me. He very bluntly goes, "Did anybody discuss the results with you?" We said, "We were told that’s what you’re supposed to talk to us about." The look on his face said it all, when he realized we had no idea. He said, "It's called Diffuse Intrinsic Pontine Glioma." Of course, we had never heard of it. But when you hear words like tumor, inoperable, clinical trial…the hope just disappears. Doctors will tell you, "It’s nothing you did," and then follow it up with, "We also don’t know what causes it." So of course you start questioning yourself. What did we do? What did we feed her? What was she exposed to?

Her diet was immaculate. We made all her food from scratch. No store-bought, ever. We were so intentional, which made not having answers even more painful.

The bedside manner at some of these places was just unacceptable, and this wasn’t the first or last time we experienced it. And when you’re already blaming yourself, the last thing you need is to feel judged or dismissed by medical staff. When you visit the hospital as often as we did, you get labeled a frequent flyer and start getting treated differently. Brooklyn would have complications related to her condition – like vomiting – and we were given clear instructions to take her to the ER within 35 minutes of its onset. This was a sick child and we were doing exactly what we were told, but the ER staff always thinks you’re overreacting.

We were so overwhelmed and in a complete daze. The second we found out, Anthony’s best friend Lorenzo and his wife Jackie flew down right away and stayed with us for a week. Anthony’s dad came too. They all helped keep Brooklyn distracted and entertained. Jackie cleaned the house, did laundry, filled the pantry, researched trials, sent out applications, and made phone calls.

We’re so grateful. But truthfully, we wish we had more help like that. Everyone would ask us, “What do you need?” again and again. I don’t know what I need. I need my kid. That’s what I need. We started learning about clinical trials right away, because there's no approved treatment or cure for DIPG. We had very little guidance. Word of mouth and social media became vital later on, but we weren’t plugged into that community yet.

I remember the neurologist telling us to not even look up treatment options – said we wouldn’t find anything.

He said something like, “You won’t find anything good.” I think he meant that we’d see some scary stuff. But saying that kind of thing kills hope. We were eventually presented with four clinical trial options, but it felt impossible to navigate. The only options we found were Phase I, which means they had no real data to back their science yet, or they had age restrictions. One trial seemed encouraging, but it was only in Texas, and the company ended up shutting down.

A trial in Miami seemed the most promising. It’s close to FDA approval now. It’s not a cure, but it could offer more time.

But it was Phase I at the time of Brooklyn’s diagnosis. And the drug — ONC 201 — takes three months to start working. We didn’t have three months. Brooklyn had already progressed too quickly. And most trials don’t take kids under five years old.

We eventually went through the DIPG tumor board, where doctors from around the country — sometimes from other countries — meet to discuss patient cases and can suggest their own clinical trials when a child might qualify. We found out she was a candidate for a trial at Columbia.

They said the helmet didn’t fit kids under four. She was three and a half. Her age was on page one of her file.

That kind of oversight was the final blow. Clinical trials just aren’t built for toddlers. As a dad, I’m supposed to protect my family. And I couldn’t. Guilt is the hardest part of grief.

She finished her 30 rounds of radiation at St. Jude in August, and then we came back home in September. That’s when she had her honeymoon period, where the radiation stalls progression of the tumor and you get a little window of time. She still couldn’t walk on her own, but her speech started coming back (she had lost it a couple months prior and couldn’t talk on her birthday in late August). She spoke slower and thought slower, but she was still her. Some families don’t even get that.

She started to really love the couch. She’d come out every morning and sit in the same place. It was her safe spot. So we set it all up for her – she’d play there and eat there. When the physical therapist came, it started to become a good indicator of her strength, seeing how willing she was to try to get up from her spot. But after the honeymoon phase, getting her to take her chemo was impossible.

She had to take so much medication, and it all tasted awful. I tried her chemo once and thought, how am I supposed to give this to a kid? I told her, “Honey, this is what we need to do to help you feel better.” And she said, “Okay, Daddy.” She took all seven meds all at once.

They act like everything tastes like cherry Tylenol. But dexamethasone is disgusting. And no one tells you how to help. I remember calling St. Jude one week that fall, worried that Brooklyn hadn’t taken her chemo. They told us to enjoy our upcoming Make-A-Wish trip in November and that we’d figure it out after. We went back to St. Jude in late December and found out her tumor had doubled in size. The doctor told us she didn’t need to take the chemo anymore. Her face said it all.

We never saw the final MRI. It had to be massive.

Her other eye started changing – too much pressure on the optic nerves.

It was confusing to us, because she had so much energy still. Some nights we couldn’t even get her to bed. I’d ask, “Want to try walking?” and she’d say yes. So when they told us she was in progression, it didn’t make sense.

St. Jude wouldn't allow a second round of radiation – they said we had to wait a year, which we obviously didn't have. So a DIPG nurse navigator from the Chad Tough Foundation sent Brooklyn's records to the tumor board. By the end of January, the ONC 201 trial in Miami had accepted Brooklyn on compassionate care. This means that even though she technically didn’t qualify for the trial, they let her try it anyway because we had no other medication options. We had always felt comfortable with Dr. Hall, so we left for Miami right away. He agreed to do another round of radiation – 10 treatments instead of 30. At least we were trying something. 

Some doctors are more willing to do radiation because they know the child won’t live long enough to experience the other issues radiation causes. They’re not worried about future cancers because these kids just don’t make it that long. So we went, did all the prep, the radiation simulation, etc. Everything was ready. But the day before radiation was scheduled to start, Brooklyn’s anxiety was through the roof.

She felt like a completely different kid.

That entire week prior, it was impossible to get her attention. She was hyperfixated on Play-Doh, but nothing else. Not TV, not books, not us talking to her. She didn’t even want to go outside. So when the hospice nurse came by the day before radiation, we shared this and learned it was something called terminal restlessness. It’s when a person is very close to the end, and their body reacts with extreme anxiety and agitation. So between that – and also knowing how hard radiation was on Brooklyn the last time – we had to ask ourselves if it was worth it. Radiation changes kids. Brooklyn was never the same after her first round. No one talks about how damaging it is, especially to a developing brain.

So we met with Dr. Hall – we were so grateful he agreed to see us and listen to us the day before. He was so understanding. I asked him, what would you do if it were your child? Would you do a second round of radiation? He said he wouldn’t do it. We were surprised he even responded. It gave us peace. 

That’s when we knew it was time to focus on her comfort – but that set off a whole other round of issues. When hospice says they’re going to make her comfortable, why am I still hearing noises from my child? Why is she moaning? She was supposed to be completely out of it. She was 34 pounds and on adult doses of morphine – and it still wasn’t enough. But they wouldn't increase the dose. There was one time when the nurses were talking about bathing her. Brooklyn – who was supposed to be in a medically induced coma – woke up as soon as she heard the word “bath.” She despised baths.

She was conscious of what was going on. Their idea of comfort was not at all comfortable for Brooklyn.

She passed away on February 17, 2024.

It took her so fast.

Of course. Don't mind the mess. Everything’s where she left it.

We couldn't throw anything away.

It’s a lot to manage. Her last Christmas was her biggest. My NICU team got her a Barbie Dream House. It took up half the room.

I spent two hours building it. She didn’t care about her other gifts – just that one.

Her Disney Princess dress from Bibbidi Bobbidi Boutique is on a mannequin. We’d love to have that photographed.

We tried therapy. It was a disaster. It’s hard to find a therapist who understands the loss of a child. The first one told us to travel, and then asked if we had considered medication. I lost confidence in her completely.

The therapist also asked, “Have you thought about having more kids?” That question is too common. Brooklyn had just passed away. That experience made us not want to try therapy again.

We’re still learning how to grieve. We text during the day if we need to, but if he’s having a good day, I don’t want to pull him into my black hole. Right now, it feels like we’re grieving separately.

Grief is exhausting. I deal with it by staying busy. But I know that drains Darline. It’s hard because what helps me doesn’t help her. Sometimes I worry she thinks I’ve moved on or that I’m further down the road toward acceptance. But I don’t know any other way to do this. It’s what I did while Brooklyn was still here – just kept going. Maybe I’m good at hiding it. I do a lot of grieving in the car, too. I drive several hours a day, alone. So that’s when I cry. People think I’m doing better, but I feel just as much pain. That’s how a lot of dads are. We just express it differently.

I know he hasn’t forgotten Brooklyn. I know how deeply he loves her. But I still wonder how he’s able to keep going. He tries to get me outside, but I just want to lie in bed. I’ll go out for five minutes, and then I’m right back in. Some days I wake up and remember she’s not here, and it ruins everything. Then it turns into stress and migraines. Work can be triggering, too. I probably went back to pediatrics too soon. So when I get home, I lie in bed. I don’t know how to cope.

People will say things like, “Your child wouldn’t want you to live like this.” But that’s not helpful. It feels like judgment. If she is watching us, I hope she knows we’re doing the best we can.

The hardest part of grief for me is that it shows up out of nowhere.

With no reason. If something triggers it, fine. But when I’m just sitting in traffic singing a song, and suddenly a horrific memory hits? Why? I just want to learn how to deal with the emotions when they hit. I’m not trying to suppress everything, but we need tools to handle it a little more easily.

We just wanted her to have a normal life. She didn’t even get to start school, and she was so excited about it. We got her a little backpack. There are so many kids who don’t get to experience school, or even lose their first tooth. We take so many things for granted – graduating, getting a license, going to college. Just normal kid stuff.

We did meet with a counselor at a children’s hospital nearby who specializes in bereaved parents.

She told us, “I’m not here to diagnose or prescribe. I’m here to listen.” That made me feel so much better. Maybe she can help us through this and understand each other’s grief better. Because right now, we only have each other. Brooklyn was everything. Our whole world.

Grief is a monster, but I also don’t want it to go away. I’ve come to see it now as unexpressed love. And I was supposed to love her forever.

People are afraid to ask about Brooklyn because they think we’ll get emotional. Of course we will – she’s our daughter and she died. But we want you to ask about her. We want you to understand that she lived, she breathed, she fought. I wish people would ask us to tell them about her. Any proud parent wants to talk about their kid. I still want to talk about her.

Bingo. Talking about our child is not going to make us more upset than we already are. Don’t be afraid to say her name. We want to hear Brooklyn’s name. Don’t be afraid to bring her up. I heard something once that really resonated: you die twice – once when you actually die, and again when people stop saying your name. So sometimes I wonder: when we pass away, who will say her name then? There’s nothing a grieving parent wants more than to talk about their child. 

Also, if you’re planning something with kids, don’t decide for us. Please invite us. Let us decide if we can handle it.

We’ll probably say no, but being asked matters. I know that most people never know someone who’s lost a child. But that doesn’t mean it should be so taboo to talk about. In the beginning, I was furious at what people said and how they acted. But now I've realized, I used to be that person. So maybe if you haven’t been through this but someone in your life has, ask how you can support them. Ask how you can help them feel seen.

Some of our relationships have definitely shifted. You start to realize which relationships actually matter. Lorenzo’s one of those people for me. I talk to him every day. He makes life feel normal. And we’ve also made new connections with other bereaved parents.

There’s a saying: “In twenty years, no one will remember that you stayed late at work – except your children.” It’s true. It’s easy to get distracted with work and with life. But being there and saying “I love you” matters. You can’t say it enough. Children need to hear it.

And remember that you’re not alone. There are support groups and people who dedicate their time to helping newly diagnosed families. We didn’t take full advantage of that, and looking back, it would’ve helped. Also: advocate for your child. It’s vital, especially with DIPG where treatment approaches often feel cookie-cutter. Keep pushing. Don’t settle for the first explanation a doctor gives you. You’re doing your best for your child. But don't stop asking questions.

Many doctors haven’t even heard of DIPG.

Right. It’s not that they know nothing, but it’s limited. You have to be your child’s voice, especially when they can’t advocate for themselves. And for families newly diagnosed with DIPG, there’s a resource not enough people know about called the DIPG Navigator. The navigators are nurses who help you research clinical trials. They do the heavy lifting, figure out what your child qualifies for, and explain it in a way you can understand. It takes some pressure off you during a crisis.

And another piece of advice: when it comes to decisions, there’s no right one. We were told the only wrong choice is to do nothing. 

If your child is bedridden and the end is near, that’s one thing. But when they’re still walking and functioning, there is no right or wrong. We beat ourselves up, but we were doing the best we could.

And know what’s best for your child – not what’s best for you. We wanted her with us, but not at the cost of her quality of life. We had to let go of our instinct to hold on so that we could do what was best for her. And try to have hope. It’s all you have.

If you took your child to the hospital and were told there’s nothing they can do – that you have six months left – how would you feel? How would you use your power to change that? We’re launching rockets into space, yet there’s kids being diagnosed every day with a terminal illness. And for DIPG, something we’ve known about for decades, there’s been no real progress in 30 years. What are you going to do to change that? We want to get involved, starting at the state level. Florida’s supposed to be good about allocating research funds.

We have to get rid of all the bureaucracy. Kids make up 25% of the population, yet only 4% of funding goes to childhood cancer. Some say it’s gone up to 8%, but that’s for 200 different types of cancer. In the past two years, the number of DIPG cases per year has doubled. Two years ago there were roughly 300 cases a year – now it’s around 600.

And what’s really frustrating is hearing that institutions hoard data. If they worked together, maybe they’d make progress. But instead, they sit on their own notes.

We’ll keep fighting, though. And advocating. Brooklyn was our world. We built everything around her. We’ll talk about her forever. It won’t bring her back, but maybe it will raise awareness. Because I’d hate for another mom to go through this.