Theo's Story, Part 3: SUNSET

In the final part of Theo’s story, Allie and Mike share the magic of hearing their son speak again, after four months of silence. They reflect on a beautiful and intense summer - the elated highs and the gutting lows, before recounting their final weeks with Theo, when his tumor began to progress and eventually took his life. 

SUNSET is part 3 of a 3 part series. This episode contains details about the death of a child - take care of yourself while listening.

Show credits:

Written, produced and edited by Allie and Mike Kramer.

Music by Mike Kramer, Duncan Thum and Tyler Sabbag.

To join us in the fight against DIPG, visit ThriveLikeTheo.com.

________

Get in touch!

Email: contact@worstclubeverpodcast.com
Instagram: @worstclubeverpodcast
Website: www.worstclubeverpodcast.com

Transcript

SPEAKER_04 0:01

Here we go.

SPEAKER_01 0:13

What pit is this one? This one says it's your first visit to Where are we?

SPEAKER_14 0:23

Disney And then what about the one below? It's the small world. And then what about last one? Low. Lightsaber! And then what about last one?

SPEAKER_10 0:53

Welcome to Worst Club Ever, a child loss podcast. I'm Allie Kramer, and this is part three of my son Theo's story. The part where he comes back to us, and the part where we lose him again. Theo's death is an event that is sacred to us. The only way we know how to share it is with raw honesty and our whole hearts. As a result, this episode contains details about the death of our child, as told by two parents in a lot of emotional pain. But as Fred Rogers liked to say, anything that's human is mentionable. And anything that is mentionable can be more manageable. So we're not gonna shy away from mentioning, from giving voice to this very human experience. Take care of yourself while listening. Okay, on we go. After nearly four months without verbal communication, guessing what he was thinking, what he was feeling, after nearly four months of yearning, aching to hear his voice, Theo regained his ability to speak.

SPEAKER_03 2:31

Open the preschool door.

SPEAKER_10 2:33

Open the preschool door. Did you want to read this book?

SPEAKER_03 2:41

And I died.

SPEAKER_10 2:43

You're right, we haven't read it in a long time. Let's read it with care. We were astonished. Words just cannot describe the feeling. It was elation, it was disbelief. It was like going from Kansas to Oz. The very same weekend he started speaking again. We took him to Disneyland for the first time. It's a trip we will never, ever forget. Disneyland is a special place for my entire family, and it's a place we now associate with many core Theo memories. So to tell you about it, Mike and I went back. He had just started talking two days before, and so many things went right. Like every chip fell exactly where it was supposed to, which was a miracle.

SPEAKER_13 4:07

Tell me about what that was like coming here when he was just regaining his ability to speak again.

SPEAKER_10 4:14

Oh my god. I mean, it felt to me like he had come back from the dead. That's how dramatic it felt to me.

SPEAKER_13 4:23

Right, like if a person who had died just suddenly walked in the room again.

SPEAKER_10 4:28

Yes. It was like, oh my god, it's feel. I mean, it was more than just the talking, too. It was like something shifted a lot cognitively. All of a sudden, he was back and he had light in his eyes, and he was our son again. Because he had been here, but he hadn't been him.

SPEAKER_09 4:49

And you know, I I missed him. I missed him so much those first few months.

SPEAKER_10 4:59

And so to bring him to this place and to see him come to life even more, I just never thought we would have that. And we were all bouncing off the walls. My entire family was like on drugs. Um, I mean, everything he said, we were like, yes! You know, he would say really slowly about the the aerial ride. The animals were playing music, and we're like, yes, yes!

SPEAKER_14 5:44

What instruments were they playing with?

SPEAKER_10 5:57

I mean, we were just um we were all completely lit up with joy. And so was he.

SPEAKER_11 6:07

Yeah, yeah.

SPEAKER_10 6:09

You know, we've talked about how the magic of this place did something to him, brought him back in some way, and and it did for us too. The magic of seeing him be brought back brought us back. What was it like for you?

SPEAKER_13 6:28

I mean, the little mermaid felt like much of our life during the nine months while Theo was sick. Yeah, you know, it was it was not lost on me. The similarities with Theo and and the Little Mermaid story, you know, there's this kid who lost his voice. Uh it was stolen from him. And then he was able to get it back. Yeah, it hit me pretty hard thinking about all the parallels between Theo and this story. For me, the weekend felt so special and surprising because, you know, when you have a kid, you have all these images in your mind of them as they get older and having all these rites of passage where they, you know, have their first sleepover and they graduate high school and they lose their first tooth. And in an instant, all of that was just dashed when we're given the diagnosis. And for this weekend, we were given this gift of, oh, we get to actually have one of these.

SPEAKER_10 7:54

Yeah. Felt like we existed outside the laws of the universe.

SPEAKER_13 7:58

Yeah, yeah.

SPEAKER_10 7:59

Like we were granted this like portal.

SPEAKER_13 8:02

Into an alternate universe where Theo wasn't sick.

SPEAKER_10 8:05

Yeah, that's right.

SPEAKER_13 8:06

And we got to live in it for just like a day.

SPEAKER_09 8:09

Yeah. We were out so late those nights with him. It was like it's like none of the rules existed.

SPEAKER_10 8:16

We could be out till 11 with our three-year-old, and he wasn't even tired. He wanted more. It was just like anything felt possible. We were giving him mango ice cream, and he was on a strict keto diet with no sugar. And we were like, you know what? Let's let him live.

SPEAKER_13 8:37

No. No rules apply.

SPEAKER_10 8:39

No rules applied. Yeah, and I think all of us were in shock that it was going as well as it was. Oh my god, he's back, and we're at Disneyland and we're having a blast, and he loves Rise.

SPEAKER_09 8:49

Like, you know, when he went on the roller coaster, I was so shocked that he liked roller. We didn't know he liked roller coasters. How would we know?

SPEAKER_03 9:07

Was it fast or slow?

SPEAKER_04 9:13

It was pretty bad.

SPEAKER_10 9:15

I was remembering how impressed I was with how fearless he was that weekend. Like these things that I thought would scare him. The speed of the roller coaster, the dark rooms, Ursula. He just was not scared of any of it. And I remember a conversation that you and I had about it. Do you remember this conversation? Yes. We were talking about it, and you said, of course it's not scary. He he's been through and continues to experience the scariest things a human can experience. So, of course, a fat what's a fast ride? What's a dark room when you have experienced losing the ability to move every muscle in your body and speak and walk, and you're going to the hospital every day, and they're putting you under and they're inserting needles in your arm. And of course, this isn't scary. They set us up with a whole meet and greet with the Spider-Man and an Iron Man that we'd met. And he had never even seen Spider-Man or Iron Man. He had no context. So he didn't even know what their names were. But he knew that they were cool. And Spider-Man was so sweet with him and ended up walking Theo like across the park. You know, we said, wow, Theo, Spider-Man is, he's, you know, he's holding your hand, walking around, and it's so cool. Look, all these other kids wish they could meet Spider-Man. And then later in the day on the ride home, we have such a cute video of him saying, I'm at the Bider Man.

SPEAKER_14 11:03

He was owning my hand.

SPEAKER_03 11:08

He was getting me a tour around. And he was giving you a tour around. What was the other name? I think it was Iron Man.

SPEAKER_06 11:28

Take a crack!

SPEAKER_13 11:31

Maiders junkyard Jamboree. Theo's favorite ride at Disneyland. Tractors and trailers. Two of his favorite things in all of life.

SPEAKER_06 11:43

Tractors and layers. Hey Theo. Are you gonna ride a tractor trailer?

SPEAKER_08 11:55

Who is that? Do you see do you remember what his name is? Toe maybe. What is that?

SPEAKER_06 12:08

What can I speak by bringing?

SPEAKER_10 12:11

Tell me about when we got off this ride.

SPEAKER_13 12:14

Oh my god. Theo was so excited that he grabbed the anglebar in front of him. He stood up. This is a kid who is wheelchair bound for months. He even did a little dance. He was dancing, yeah. He was like shuffling his feet. He was so excited.

SPEAKER_10 12:44

He did it as if he'd forgotten that he couldn't.

SPEAKER_11 12:48

Yep.

SPEAKER_10 12:50

And because he forgot that he couldn't, he could.

SPEAKER_06 12:54

Yep.

SPEAKER_07 13:00

This accent is incredible.

SPEAKER_13 13:05

Mater Espanol is incredible.

SPEAKER_07 13:07

So good.

SPEAKER_12 13:27

Oh no, take you made her. See you later, buddy.

SPEAKER_10 13:52

When the family took Remy to put her to sleep, and it was just the three of us, just me and Theo. And it was nighttime in the park, which is my favorite time at Disneyland. And he was so awake and so enthusiastic, and his eyes were just like huge, taking in all of the lights. And uh I just remember feeling like I had never wanted to like groundhog day anything so much in my life. I just wanted to wake up and relive that day over and over and over again. And I remember thinking, if I die tomorrow, that that's enough. This is enough. Um yeah. We were both crying.

SPEAKER_13 14:46

At the end of the day. At the end of the day, yeah. It was the happiest day of my life since the worst day of my life.

SPEAKER_10 14:51

Yes. I just remember thinking, do we have to leave? And and that was there was so much in that. It wasn't just do we have to leave Disneyland, but it kind of was. It was like Disneyland was this place where this miracle happened, and I just wanted to hang on to it. So badly, I wanted to hang on to it. Look at this five. Here you leave today and enter the world of yesterday, tomorrow, and fantasy. Yep.

SPEAKER_09 15:31

Bye, Disneyland.

SPEAKER_13 15:33

Bye, Disneyland.

SPEAKER_09 15:35

Thank you.

SPEAKER_10 16:00

All the rides, all the characters, all the new toys and pins and stickers he got. God, it felt absolutely wild to just be having a conversation with him. The next night we stayed up talking again, and as he tried to fall asleep, he said, Mommy, with me. I remember thinking if I could do a sound onto my body, it would be his little voice as he said that. When it became clear he wouldn't fall asleep without one of us there, we asked if he wanted to come sleep in our bed. And that was that. He slept in our room for the rest of his life. This new presence of Theo back in our house again, ushered in a summer that I can best describe as intense. A summer of extreme highs and extreme lows, like living full-time on a roller coaster, where within hours we'd go from riding on top of the world to plunging into despair, and then back up again, and on and on. It's an impossible position to be in, living with the knowledge that your child is going to die. It's not how we're meant to live. Everything feels too precious, too heightened, the daily state is way too high for normal functioning. My perspective on what was possible with his treatment changed drastically. Once we got him back, I was terrified to lose him again. Though I knew what most likely awaited us, I found myself with much trepidation, allowing in tiny glimpses of hope. Our friend Alyssa and her nonprofit We Got This had t-shirts made for us with the slogan, Thrive Like Theo. And there were times he really thrived during those months. Of course, as every cancer parent knows, behind the scenes of the magic moments, there was a daily care schedule that was taking a huge toll on both Mike and I. The daily grind was relentless. 4 30 a.m. I give Theo onk 201. Dissolve pill in water. Give with Zofran. Draw up syringe, push through feeding tube while he's asleep. 5 30 a.m. Theo wakes up. Starts screaming for dad. Prep today's formula: chickpeas, avocado, protein powder, broccoli, kale, mct oil, olive oil, salt. Grind, measure, and mix list of 14 supplements. Bozwalia, Ashwagon, Niacinamide, keto electrolyte, vitamins D, K, and A, Orex, NK cell activator, salinic acid, zinc, mushroom compact, each. Start feeding pump. Remy wakes up. Rachel arrives to help with Theo. Morning beds. Phenofiber Bionin A at Foreman, cannabis time. CBD, C B G DHC, mix and push. Bath bed. Cover Theo's pick line with rubber sleeve. Undress him and try not to wince at how skinny he is. Put him in the bath while he screams. Clean crust from his G2 site. Dry him off. Insert new feeding tube. Tape Gauz bolster onto his stomach. More crying and screaming. Couch time. Watch YouTube while Feeding Pump runs. It's me flipping. Feeding pump clogs. Unclog and start again. A cough. Whip around for a barf bag. Too late. He's thrown up all over himself. Go upstairs, get a change of clothes for him, and then back to YouTube.

SPEAKER_00 19:50

It's me flipping!

SPEAKER_10 19:52

Hospital trip. Pack formula, feeding pump, mini cooler of afternoon meds. Wait until the last possible second to tell him because of his extreme agoraphobia. Off to CHLA. Check in, head to floor four. One hour for OKM 007 infusion. Afternoon nausea meds in cannabis time. Push. Feeding pump clogs again. Unclog, restart. Time for weekly pick line bandage change. 20 minutes of agony while the nurses peel off old bandage and reapply new one. A lot more crying and screaming. Drive home. Theo throws up again. But I catch it this time. 8:30 p.m. Theo's bedtime. Prep nighttime meds and supplements. Melatoninochial. Apogenic biotic. Read stories. Clean cheat tube. Try our best to brush his teeth. Aqui for his bloody peeling lips. Sing Theo lullabies for I don't know, a half hour while we snuggle in bed. Please, Theo, sleep. I prep a goodie bag of meds for the night. Painkillers, sedatives, anti-nause drugs. Sneak in like a ninja to give last dose of meds to his tube. Bush. For the love of God, please don't wake up. Go upstairs to air mattress. It's my night of sleep. 11:30 p.m. First wake up. Mike rubs his bath, gives him drugs to help him fall back asleep. Bush. 1.30 a.m. Second wake up. Mike brings him into our bed to soothe him. 3 a.m. Third wake up. Mike prays he falls back asleep. More meds.

SPEAKER_13 21:33

I mean, every day felt like it was an entire year. Um it felt like being ground up. You know, every other night we w one of us wasn't sleeping, and every moment we were on pins and needles, either worrying that he was gonna throw up or worrying that we'd forgotten to give him a medication. It felt like I was always in this low level but panic state. Constant vigilance.

SPEAKER_10 22:03

Do you remember the very first night he slept in our bed? In the middle of the night, you thought he had stopped breathing because you had been hearing him loudly breathing, and then it stopped. And you jumped up and we're like, Oh, he's not breathing. And and I was like, what, what? And uh we were jumping up at Theo Theo and we switched the lights on, and and he goes, I'm okay. And I just remember we were like Okay, okay, let's go back to sleep, okay, good night. And I remember thinking, wait, what he died in his sleep? Like, that was it. That was the most because you know at the edge of our mind was always this knowledge that he was going to die. And when will that happen? How will that happen? What will that be like? Haunted us, even in our sleep. I mean, clearly you were half asleep when you had that panic attack that he had died. Um, and I think with all of that panic, you know, it would have been a lot easier to just stay home with him all the time. Um, but once he sort of came back to us, we started traveling with him. And, you know, even though packing up all the meds and medical gear took forever, it was so worth it.

SPEAKER_04 23:23

Yeah.

SPEAKER_10 23:24

Looking back, I'm really glad we did that because our travel was some of the best times ever. I mean, do you remember one of the first trips after Disneyland was the make-a-wish trip? So, um Theo had a favorite YouTube channel, which was uh Basiland, which is like this Polish We called it Basiland.

SPEAKER_13 23:44

I think it's actually called Basiland.

SPEAKER_10 23:46

Basiland. Basiland.

SPEAKER_13 23:48

It's like clip art animation set to bad stock music. It's all about farming and tractoring and harvesting. And I don't know why, but our son was obsessed.

SPEAKER_10 24:04

Obsessed. And so we decided to have our wish trip at a farm where we were going to make it into real life Basiland. We went to Underwood Family Farms. We got kind of the star treatment there.

SPEAKER_03 24:20

Hey, Bill! Hey, a Bailey Bob Farmer Bob. A farmer Bob with a farmer.

SPEAKER_08 24:28

Wait a minute. Is this the Basiland thing? I think we might be at real life Basiland.

SPEAKER_07 24:41

Right, right there.

SPEAKER_04 24:42

Oh my god.

SPEAKER_07 24:43

I think it's a real John Deere track.

SPEAKER_05 24:45

It looks just like the one in your house.

SPEAKER_07 24:51

Can I see it?

SPEAKER_03 24:53

This is the best day ever.

SPEAKER_10 24:56

We went on a tractor trailer ride.

SPEAKER_13 24:58

Picking berries.

SPEAKER_10 24:59

Picking, yeah, picking a lala berries, which I had never heard of.

SPEAKER_02 25:10

It's a new berry. We've never had it before.

SPEAKER_04 25:15

It's kind of like a berry. Here we go. Okay.

unknown 25:23

Oh my God.

SPEAKER_06 25:25

That's my baby.

SPEAKER_10 25:44

It was really, really cute. We all dressed up in farmer clothes. We put Theo in these really cute overalls.

unknown 25:50

I got my own dog.

SPEAKER_13 26:00

There there was this like tractor playground where these slides attached to combines.

SPEAKER_05 26:06

Uh-huh. Here we go. One. One two three.

SPEAKER_10 26:29

I feel like we should talk about his physical progression because in the beginning, his body changed so drastically. He had gone from being a very strong, if not tiny, but a very strong little boy with like pure muscle. And then instantly after he was diagnosed, you know, he couldn't eat or walk, and um, he lost a lot of weight. He was completely skeletal. You know, the skin on his butt was sagging and loose because he had no muscle at all. Um so I was very doubtful of what kind of physical progress could be made. And you, Mike, really helped to push him. You believed that he could progress physically. I I was always like when he would protest and cry, don't make him do it, don't make him do it. But from the beginning, you were holding him up and trying to get his legs to walk, you know, okay. Right foot, left foot, right foot.

SPEAKER_13 27:28

Yeah, there was something really surreal for me about helping my son learn to walk again. I would have these flashbacks of when I was helping him when he was just a baby. Here I am again with my three-year-old teaching him how to walk again.

SPEAKER_05 27:50

Yes, oh, you want to go over here?

SPEAKER_10 27:54

We started with this amazing physical therapist named Jenny Swan um in April. And at that point, you know, he was what was he doing physically at that point? Not much.

SPEAKER_13 28:06

Barely moving both sides of his body.

SPEAKER_10 28:08

But uh, Jenny kept at it.

SPEAKER_03 28:10

Okay. Nice and slow. Easy does it. You got it, you got it, you got it. Yeah.

SPEAKER_04 28:18

Very good.

SPEAKER_13 28:20

Jenny was incredible because she found a way to make the therapy feel like play for Theo. Yes. So she would incorporate all of his favorite toys.

SPEAKER_10 28:31

Right. Treasure hunt. Find the gems hidden around the house.

SPEAKER_03 28:42

Another surprise for Theo. A lava.

SPEAKER_13 28:45

She used all these gardening toys with Theo to encourage him to move around the backyard.

SPEAKER_03 28:52

And he found the adult power. It's so powerful. I throw you away.

SPEAKER_13 29:01

I mean, just so much creativity. Uh, and it worked.

SPEAKER_10 29:07

It worked. July 9th, six months after he was diagnosed. We wanted to go into the yard to pick some apples.

SPEAKER_13 29:16

And can can we watch a clip? Yeah. Of this? Yeah.

SPEAKER_10 29:33

And we're like, oh my god, oh my god, oh my god, oh my god, oh my god, it's happening. Um I mean, I I just never thought I'd see him walk again. I never thought it would happen.

SPEAKER_05 29:43

Oh, we knew you could do it, bitch.

SPEAKER_04 29:45

I did it!

SPEAKER_10 30:03

I think we should sort of paint a picture. So imagine he has a feeding pump and he is tethered with this cord that goes straight to his stomach. So what was funny is he would just walk wherever we want he wanted, but the adult with the backpack had to follow very, very closely to make sure that horror of horrors, the cord didn't get yanked out of his stomach. And so he had no idea how closely someone was following him at all times and like pivoting whenever he pivoted. And then, you know, Mike had the idea, I think he might be strong enough to start carrying a little backpack himself, and he can carry his pump.

SPEAKER_13 30:41

Yeah, there's there's this vivid memory I have of we went to the local park by us and we put the backpack on him and he started walking off on his own, exploring a corner of the park. This was the first time in like six months he was alone and in independent. CEO's first independence in seven months.

SPEAKER_10 31:08

Go be free, little guy. Be your own man. It was profound to see him across that field. Why do you think all of this physical progress was happening now?

SPEAKER_13 31:21

Yeah, I mean, we were doing a trial for this drug called OKN 007, and I I think it was it was really helping him. It was an infusion uh that we got at the hospital three times a week. You know, we thought we'd explored every bit of the hospital uh from all our time there, but there was this this new wing uh called the Infusion Center. And the staff there was amazing.

SPEAKER_10 31:50

Amazing.

SPEAKER_13 31:51

They were so kind and really cared deeply about Theo's quality of life. And they they just did such a beautiful job of making that space feel like home. Well, when when Theo uh was in the Infusion Center playroom, that was like his preschool.

SPEAKER_10 32:12

Yeah, it was. He would do art projects, they would have, you know, oh, today we're making guitars with glitter glue and this or that.

SPEAKER_13 32:20

And yeah, you know, and he actually got to sometimes play with other kiddos.

SPEAKER_10 32:25

Yeah. It was a really special place and he loved it. And he would never want to go, but then once we were there, he wouldn't want to leave.

SPEAKER_01 32:32

Here we are at the infusion center, playing with all the tools. Sure, what do you want me to put down? Our deck.

SPEAKER_13 32:40

One of my favorite stories from the infusion center is there was this one day where he was not feeling great at all and had was actually having trouble walking that day. And Lauren, uh the child life specialist, wanted to cheer him up, so she said, Hey, hey Theo, you know, uh we're putting together this scavenger hunt, and maybe next time you come, we we can do the scavenger hunt together. And I remember what Theo said. He he thought for a second and then said, Why not today?

SPEAKER_07 33:16

Yeah.

SPEAKER_13 33:19

And so I picked him up out of his wheelchair, and incredibly he started to walk on his own, going from clue to clue. And by the end of it, he was running around the infusion center.

SPEAKER_07 33:34

Yeah.

SPEAKER_13 33:37

That little phrase of um, why not today? That's one of those phrases that I hear Theo telling me, when you know, when I don't want to do something, when I but I feel like I just don't have the strength to to walk around in this world, I I think of his little voice saying, why not today?

SPEAKER_10 34:19

One of the things that blows me away still is um just how present he was. Maybe this is like the blessing of him being only three. Um he did not have existential fear of the future. He didn't know what death was, he didn't know what cancer was. Um, and we didn't tell him because he wouldn't have understood, and it only would have made him scared. So he knew when he felt sick, and he knew when he felt better. And that was kind of all that matters. I'm I'm feeling better. I'm better today. And yes, when he felt horrible and he was in pain, it was awful and excruciating. And then when he was out of pain, he didn't seem to carry with him the trauma of what had happened just a few hours before. He never asked, wait, why can't I walk? Or wait a minute, I used to go to preschool. Why don't I go to preschool anymore? Why don't I eat? He never asked that. I kept waiting for him to have questions about his his state. He just accepted his current circumstance. I mean, one of the perfect kind of quintessential examples of how he lived in the moment was our trip to OI.

SPEAKER_07 35:36

Yeah.

SPEAKER_10 35:37

And that was the last big trip that we took as a family with him. And the morning we were gonna leave, he was violently throwing up and did not want to leave the house. He was totally miserable. We just thought, this is crazy, let's not go, let's cancel. And we decided to go. And as we left, he was in a state of extreme agoraphobia and panic. He was screaming for you. Um, you know, he was always terrified that the car would leave without one of his parents. And then we get there and we had one of the absolute best weekends of his life. He would run up and down the hill.

SPEAKER_07 36:21

Fast your Theo, run, run, run! Run, run, run, run, run.

SPEAKER_10 36:25

We were swimming. He was happy to be in the pool.

SPEAKER_05 36:28

And then you get him out and they go.

SPEAKER_13 36:32

We were helping him climb trees. Is this tree there? He was up in it.

SPEAKER_05 36:37

Up there? Do you want to go up in it?

SPEAKER_13 36:39

We were playing hide and seek.

SPEAKER_10 36:40

Yes. We would go, where's Theo? Where's Theo? And he goes, I'm right here! Where is he? Is he in the trash can? It was so incredibly magical, and it just kind of perfectly encapsulates what this summer was like. You know, in the morning, he's in a state of anguish and panic, and by the afternoon, he's squealing with delight. You know, at night we would all sit on the grass, um, and everyone was there, my parents, my brothers, and um, Theo would be really sad when the sun was going down, which was so tender. He would start crying and say, I don't want the sun to go down. And all of us were just thinking, neither do we. We knew what was coming, uh, but we were just trying to appreciate the beauty while we had it. At the end of September, we took a family trip to San Diego, and that was when things really started to shift. Theo was extremely ill. He was vomiting constantly and could not keep down any food or hydration. He was crying, pale, hurting. We were giving him pain meds round the clock. He was very weak and wasn't walking. Instead of going home at the end of the weekend, we ended up driving straight to the ER at children's hospital. We were worried about dehydration since he couldn't keep down fluids, but also, of course, worried about tumor progression. What else could this be, I thought. He had just had an MRI that showed changes in his tumor. It looked larger. But due to the immunotherapy we were giving him, which can cause swelling that looks on a scan identical to tumor enlargement, we didn't know whether his latest MRI results showed our worst case scenario, a growing tumor, or our best case scenario, a shrinking tumor. We applied for the most promising clinical trial we could find. We waited to see which direction things were going. But things only got worse from there. Theo didn't walk again, and his pain continued. Many days he'd wake up saying, I'm not good today, or I'm hurting, or I need medicine. We upped his pain meds, we stopped going out as much, spent more time at home on the couch. Theo started sleeping more during the day, and then one night, I noticed he was losing movement in his left arm and leg, just like he had when he was first diagnosed. Theo's tumor was in progression. When a DIPG tumor is in progression, it grows extremely quickly. In a matter of days, it can double in size. We knew time was running out. Mike and I were frantic, severely sleep-deprived, and barely speaking to each other. In addition to worrying about Theo, I was now worried about Mike too. He was getting constant migraines every day and became very withdrawn with his emotional pain. He threw himself into changing course and finding a new treatment approach that abandoned the keto diet and started working with iron. This is his coping mechanism. He needed to find some way to take action. But I could feel him collapsing in on himself. As Theo continued declining and only wanting to stay home, I felt we needed to cancel the trip, but Mike felt strongly that we should try to go. We decided to give it a shot. Theo cried the whole 45-minute drive there, wanting to go back home. Once we were in the park, we had a private meeting with Mickey scheduled. We walked Theo's wheelchair into the room and he immediately started screaming. It wasn't where we were supposed to be.

SPEAKER_09 42:23

He fell asleep.

SPEAKER_11 42:25

Right.

SPEAKER_13 42:27

I just remember looking at him sleeping and being so sad for him that he wasn't able to enjoy this place on his birthday.

SPEAKER_10 42:38

Yeah. And then we said, okay, let's do one ride. Let's see if this turns around. And it was not good.

SPEAKER_09 42:57

What did it feel like for you?

SPEAKER_13 43:01

This really powerful feeling that time was running out with him, that we had all this forward momentum before the summer, with him getting all his abilities back, and then all of a sudden, we're at the end of the track. And this is it? This is all the time that we have. Just like the sun going down. It was sickening.

SPEAKER_09 43:36

Yeah. We could feel the end. And um every kid laughing and every cheerful note of music was like an affront. And it just felt really weird and wrong to be in Disneyland.

SPEAKER_10 44:08

And so, after our first and only ride of the day, we took Theo's cue and left the park, going up to our hotel suite to watch YouTube videos for the rest of the day. When it was time for bed, we gave him his nighttime meds, read stories, and sang him songs until he fell asleep, like we did every night. I barely remember it. Then, with my family looking after Theo and Remy while they slept, Mike and I went downstairs to the closest restaurant at the hotel, Trader Sam's enchanted tiki bar, to get some dinner. I cried the entire time. Are we allowed to talk about Theo's death? I asked Mike. In the previous nine months, he had never really wanted to go there, choosing instead to stay planted in the present moment. But that night, the shift in the air was undeniable, the topic staring us in the face. So we talked about it. The thing I remember most was telling Mike how afraid I was of getting stuck in the past. And through our tears, I made him promise me he wouldn't let me get stuck. He'd always pull me out and into the present. We went back to the room and tried to sleep. Around midnight, I heard Theo throwing up. I cleaned him up and he went right back to sleep immediately, which was strange because usually getting him back to sleep was a whole process. As he continued to throw up throughout the night, I sat at the foot of the bed, awake and keeping vigil. Something was different. Something wasn't okay. It was clear that some catastrophic brain event had occurred in the night. It was Theo's birthday. And we knew deep down that he was dying. Should we go to the hospital and see if they can do another round of radiation? Mike asked me, lost, desperate. Theo was in the same state he had been in nine months ago during our initial stay at the Piku, except much worse. This time he was also having seizures. This time, we had already thrown everything we could at saving him. This time, the only thing left to do was say goodbye.

SPEAKER_13 46:53

It felt like for nine months, I was going like a million miles an hour, desperate to save his life. And then in an instant, the brakes slammed on. We're done. The fight is over. Now you you just have to say goodbye?

SPEAKER_12 47:19

And it was so hard to surrender to the idea that there was nothing more that uh that I or anyone else could do.

SPEAKER_09 47:36

Even in that state, I remember thinking that I was glad that we didn't have to slowly watch him lose all of his functioning. I had read a story about a girl that had DIPG that for four months she lost the ability to move every muscle in her body until she could only move her eyes. And I remember saying that will not be Theo, but in my heart knowing it could be because he has the same disease. And so even in my shock and for I remember thinking. Please let it be fast. And I actually remember getting dressed in my thrive like the o shirt. And looking at myself in the mirror. In the hotel and saying, You have to be strong first. And so we packed the first stuff. And you carried him out of the hotel into the elephant. I think this is the direction we took.

SPEAKER_11 49:00

Yeah.

SPEAKER_09 49:02

This is the path. I'm pretty sure. And I remember we passed some people. And one woman said, like, oh, tuckered out, big day. Thinking you were just carrying your sleeping kid who had a big fun day at Disneyland. And I don't think we said anything. It's like actually, he's dying.

SPEAKER_12 49:30

I just remember um carrying him a long way from the hotel room to the car and thinking, this will probably be the last time I carry my boy anywhere.

SPEAKER_10 50:10

In many terrible and profound ways, his death mirrored his birth. At 6 a.m. on October 30th, the morning of his fourth birthday, we drove home from the Disneyland Hotel in rush hour traffic, just as we had driven to the hospital four years earlier. Me in the back seat again, this time with Theo dying in my arms. It was exactly nine months after his diagnosis. The same amount of time he spent in my womb. We had known since his diagnosis that if he were to die, we wanted it to be at home, where he felt comfortable and safe, where we could say goodbye on our own terms. We arrived at our house. We carried him into our bed. Our hospice worker met us there with heavy pain meds that stopped Theo's seizures and put him into a deep, deep sleep. She told us he had likely suffered a massive brain hemorrhage in the middle of the night, which is why all of this was happening so suddenly. My parents and brothers came over with Remy, my best friend was there, and Rachel and her partner Chris. A close crew of Theo's favorite people, all there to surround him with love in his final moments. We sang him his favorite songs. We sang him happy birthday. We told stories. We took his handprints in plaster. We made him so many promises. And we waited. At 12 30 a.m., snuggled between Mike and I. Theo took his final breath. Our son always used to insist on giving anyone who left our house a stoop goodbye, which was gathering on the front stoop to wave as they drove away.

SPEAKER_09 52:48

The sounds of our collective wailing echoing down the street as the sun began to rise. Or at least a large part of me. For as much as I thought I had prepared over the previous nine months.

SPEAKER_10 53:39

It was more painful than I could have possibly imagined. And believe me, I had spent a lot of time imagining. We decided to go through with the birthday party and turn it into a celebration of Theo's life. It was incredibly beautiful. Friends and family members from all walks of our lives gathering to mourn and celebrate our boy. People wore green, Theo's favorite color, planted seedlings, painted rocks. We had a water truck cake, which was Theo's big birthday wish. There were eulogies and speeches. Mike played a video tribute to Theo, and Rachel sang one of his favorite songs. We were surrounded by love. And then we returned to our house. A house no longer on fire with the chaos and panic of the nine-month battle. We slept. We cried. We mourned. We vowed not to die with Theo, not to let his death be the end to our living. And to live the way he taught us to. To ask ourselves, how do I be brave? Who can you be? Why not today? In the Disneyland Hotel the day before his death, we'd sat together watching videos. I started to cry, overwhelmed by the tragedy of the moment. Usually I tried to shield Theo from seeing me so weepy, but on that day, he noticed. What are you doing? He asked me. Through tears, I told him, I'm crying because I feel sad. You can't be sad, he said, looking into my eyes. You need to be happy. These were the last words I can remember him saying to me. You need to be happy. Theo, in your short four years, you saw the beauty in the world with a clarity that I can only strive for. The grass dancing to the music of the wind, the wondrous engineering of a rumbling farm machine, the joy of screaming out a song, wild and free. So I will keep my eyes open to life's beauty, Theo. And like a plant sitting on a windowsill, I will bend towards the light.

SPEAKER_05 57:05

Oh, for me.

SPEAKER_04 57:08

And I think to myself what a wonderful blue wonderful.

SPEAKER_10 59:18

A year ago this place was covered in boxes.

SPEAKER_13 59:21

Yeah. And now it's a podcast studio.

SPEAKER_10 59:25

What is your life like these days?

SPEAKER_13 59:29

Um well, it's been about a year and change since Theo died. Some things haven't changed at all. But in some ways it's it is easier. Um, you know, for a long time after Theo died, I felt like I was just stumbling around into the world totally lost. And then eventually something shifted where I remembered some promises that I made Theo on the day that he died. As we were in bed and I was holding him, I promised him two things. One was that I was gonna take care of you and Remy. And the other thing I promised him was I was gonna try to take care of kids like him. Most days I feel miserably at that. Um but other other days I do succeed. And that became my compass. And so there's a couple projects I've been working on. One of them is a communication app that I built. It's an AI-driven app that helps kids and adults who are non-verbal, just like Theo was, have conversations with the people they love. And it's it's called the Orator. Um it's it's actually named after him. The the first four letters spell out Theo. The other thing I'm doing is I'm working for a nonprofit called Cancer Commons as their director of technology. And I'm helping them build uh an AI platform to help cancer patients navigate their treatment options. I'm I'm basically trying to build the tools that I wish I had when I was treating Theo. When Theo died, I felt like my heart shattered into a million pieces, and I was walking around the world without a heart. And so I try to borrow Theo's. I try to be like my boy. I I I try to be brave and kind and curious. I feel like we're kind of doing a a swap. I'm borrowing his his heart because I don't have one, and you know, he doesn't have a body, so I'm trying to be his hands in the world. What about you?

SPEAKER_12 1:01:53

What is life like now?

SPEAKER_10 1:01:57

Oh, things feel really different than they did a year ago. The the two things that feel of utmost importance to me are raising Remy and giving her a happy childhood in spite of all the the trauma our family suffered in her first year of life. And she's she's amazing. She reminds me so much of Theo. So leaning into parenting her has been uh a real joy and hard. Yeah, it's really hard to parent after loss when all I wanted to do was crawl into a hole, but she does help keep me going. And uh the other thing that keeps me going is building Theo's legacy. You know, I I've said before that Theo's life wasn't long, but it was wide. It reached a lot of people, he reached a lot of people, and I'm really determined to keep widening it in this way. It feels like he lives on. And a big part of that is this podcast. His death will never make sense to me, but I need to make it have meaning. And I actually get a lot of joy from sharing his story and also from building this show that I really hope is gonna help other parents and make us all feel connected to each other. You know, you you said that you want to be Theo's hands in the world, and I want to be his voice. So that that gives me just a lot of purpose, and that purpose really helps me get up in the morning. You know, at times making this show has been really all-consuming. Uh so much so that Remy has associated the word working with like working on a podcast. What are you working on, sweets? Um podcast. What is a podcast?

SPEAKER_03 1:04:03

It's when you look.

SPEAKER_10 1:04:05

What do you want to say for your podcast?

SPEAKER_03 1:04:12

You want to work on a podcast.

SPEAKER_13 1:04:15

How has this story changed in your mind in this process of retelling it?

SPEAKER_10 1:04:22

I'm able to see it from a much wider lens, see the peaks and valleys of it. I've been going through so many clips of the aftertimes, and there's so many of him laughing. There's a lot of of joy there. What was it like for you making this podcast?

SPEAKER_13 1:04:47

Um well, for one, it's taken a lot longer than we both uh thought it would. And just being honest, we got into fights about it. I think for a long time I was looking for other things to do to keep me busy so that I didn't have to dig into the pain. Cause I mean, it was excruciating. I mean, it was torture, it was a form of torture. But at the same time, it was our exposure therapy, which we said that that was that was our goal, right? And each time I went into one of these places or memories or videos in my phone, they became less radioactive.

unknown 1:05:33

Yeah.

SPEAKER_13 1:05:34

So yeah, the process was complicated. It was mixed, just like everything in this story. You know, there's yeah, there are no pure emotions about this story.

SPEAKER_10 1:05:44

Yeah. It's never one thing.

SPEAKER_13 1:05:46

Yeah.

SPEAKER_10 1:05:46

Yeah. I am thinking back to when we went to Disneyland to record together and to tell the story of his death. Yeah. Um, and we went to the Disneyland Hotel, which was crazy to be there. And we had we were crying the entire time. Uh, and then afterwards, we decided to go back to the tiki bar that we went to the night before he died, um, to get a drink and toast Tithio.

SPEAKER_13 1:06:17

To um to our boy. To keeping our hearts open.

SPEAKER_09 1:06:23

To being brave.

SPEAKER_13 1:06:26

To remembering to ask, why not today?

SPEAKER_09 1:06:32

Tithio.

SPEAKER_13 1:06:34

Titho.

SPEAKER_10 1:06:39

And then suddenly, this very, very loud, live Hawaiian music started.

SPEAKER_11 1:06:46

What is that?

SPEAKER_12 1:06:47

So fucking weird being here.

SPEAKER_10 1:06:49

It was just this perfectly absurd moment of the light mixing with the dark, the dark mixing with the light. Whether we wanted it to or not. Such a disconnect.

SPEAKER_13 1:07:20

We're like sitting in the corner of the bird.

SPEAKER_07 1:07:35

I'm so glad we're drinking.

SPEAKER_13 1:07:39

I think we need another one.

SPEAKER_12 1:07:42

These are good.

SPEAKER_09 1:07:45

At least you don't have to score this section. We have the perfect score, literally. Perfect background music.

SPEAKER_10 1:08:03

This episode was written, edited, and produced by me and Mike Kramer. Music by Mike Kramer, Duncan Toomb, and Tyler Sabog. To join us in the fight against DIPG, visit Thrivelikeo.com. And now, some very important thank yous. To our incredible friends who kept us going throughout Theo's illness, running errands, organizing resources, helping with chaotic bedtimes, and feeding us through our meal train, how could we ever thank you enough? To the performers who made magic for Theo and the people who set up those performances, what a gift you gave all of us. To our team at CHLA, from oncology to radiation, to our besties at the Infusion Center, you made our time there so much brighter. To the doctors and researchers on the other end of Mike's 130 phone calls for partnering with us to treat Theo outside the box. To those who helped us secure meds from around the world, you are heroes. Our Chadtuff nurse navigator Lauren for always being a phone call away. Our hospice nurse Mamiko for your steady, loving presence, and our nurse next door, Mary Ellen, for swooping in when we needed you. To Theo's physical therapist Jenny and his speech and feeding therapist Rachel, you both are amazing. As are our therapists, Susan and Amy, for sitting so gracefully with our pain. To Alyssa and Eric Calver and We Got This for hosting Theo's Celebration of Life. To Mariana, we couldn't have asked for a sweeter person to help care for Remy. To Mike's heroic composing team, Adam Deeb, Herberto Prado, and Jay Vincent for taking the charge with Mike's work projects so that he could spend these precious months caring for our son. To my non-related sister Dana for all the ways you carry me. What would I do without you? To Mike's mom Kathy for finding us wheelchairs and assistive technology, Mike's dad and sister Melissa for the trips you took to help us out, and his sister Michelle for all of your research. To Rachel for everything. Theo could not have had a better best friend. To my incredible parents, John and Sue, my brothers Matt and Davy, and soon-to-be brother-in-law Adam, I could spend an entire episode on all the things you did for us every single day, and it would never, ever be enough. You were there for it all. We are in this together for life. And to all of you who followed along with our journey and rooted for us and for Theo from far and wide, we felt the love and we still feel it from the bottom of our hearts. Thank you.