The Story

Luca’s journey through leukemia through the eyes of his father, Ryan.

My family and life leading up:

We have four children. Peyton (girl) 12, Luca 5, Cooper 3, and Claire almost 2. We live in North Augusta, South Carolina. Ashley is a nurse and I work for the government. We have a nice house in a neighborhood we love.

Last year in May/June we moved into the house we’re currently in, in the middle of the pandemic of course because prices were good at the time and we fell in love with this house. We were pretty cautious about COVID from the get go. We didn’t go out at all and really restricted who we had over. I was also due to travel abroad for a deployment to Iraq that was originally scheduled for May of 2020. That kept getting pushed and pushed because of COVID.

Our life was pretty great last summer, COVID aside. Since I had to stay home more because of the pandemic, we were spending more quality time than we ever had before. We’d go to the pool all the time. Luca and I were bonding like crazy. In general, the pandemic wasn’t really too bad for us, luckily.

In September, maybe early August, Luca started his first year of school. 4-K is what it’s called. It’s in the school right around the corner from us. He LOVED it. He absolutely loved going to school. I can remember the first couple of days, he wouldn’t want to get out of the van because he was scared. But on that 3rd or 4th day, he stopped caring so much and just walked in. I remember sobbing tears because he was growing up and leaving the nest for a little bit.

Finally, I got word that I’d be leaving for deployment. I left on 9/11 coincidentally. Everything went off without a hitch. Ashley was killing it at home with the kids, and I was enjoying deployment to the best of my abilities. It was a scheduled short deployment, so I was due home by the end of November, 2020. Just a couple of months.

Shortly after I left, the kids all got sick with some sort of cold. We don’t think it was COVID. But Luca didn’t go to school while he had this cold or whatever it was.

Little did we know, he’d never go back to school again.

The other kids started getting better after a while. Maybe a week from my recollection. Luca was not getting better. Mind you, Ashley was still working part time as a nurse at one of the local hospitals.

After two weeks or so of Luca not getting better, Ashley had another shift at the hospital, so her mom came to help with the kids while she was at work. She had a weird feeling from the start of that day. And when her mom called her a few hours later, Ashley knew something was wrong so she came home immediately. Luca was peeing an amber color and had a temp still. She knew he probably had some sort of infection and maybe pneumonia.

They get to the ER, and they check his labs. Mind you, he HATED all medical anything. Didn’t want people touching him or anything. Still not feeling well either.

I get off shift at work just as this is all going on and call Ashley to say goodnight. She answers the phone, and she’s at the hospital with Luca. I’m immediately freaking out. We’re facetiming so I can see Luca isn’t doing too hot. He just wanted to watch his tablet and be to himself. There was this nurse in there acting really nice. Like extra nice. It was weird. I knew something was wrong but couldn’t internalize it at the moment.

All of a sudden, a doctor or nurse comes in and grabs Ashley. Luca FREAKS out and I’m still on the phone with him. That same nurse is in there trying to comfort him, unsuccessfully. I’m trying my best too but he’s too upset to listen to anyone. It was infuriating at the time because I just want him to hear me. Maybe 10 minutes pass, which felt like an hour, and Ashley comes in, grabs the phone quickly, and walks me out. My heart wretched as I hear Luca getting even more upset and screaming. Like, why is Ashley taking me away? Why is she leaving our son alone?

The worst news of my life. Ashley doesn’t mince words. She spits it out immediately. “Luca has leukemia”.

Doubt and anger immediately fill my head and soul. I start screaming to check again and “NOT MY SON”. There I am, standing in my small little room, 6,500 miles away. I feel like I could just go run home.

I start calming down and the doctors do their best to explain. That isn’t helping much unfortunately because I could barely hear them and I wasn’t comforted by them. They eventually let Ashley and I talk to each other one on one. After 10 or 15 minutes, we decide she needs to get back to him and I need to alert everyone who can get me home quickly.

I hang up the phone and sob to myself for 10 or so minutes, and smoke a cigarette. People are walking by me outside and looking at me while I just sit there and cry. I declined to speak to anyone. Eventually, I come up with the courage to call my boss in the states. He immediately starts trying to get things in order for me to leave as soon as possible.

In the meantime, I needed to find someone I could confide in and cry with on a personal level, so I go back into work and find the friend I deployed with. I had to walk down a fairly long set of desks. I kept my head down so people couldn’t see my red eyes. I eventually reach my friend and I can tell he knew something was wrong as I ask him to come outside. I don’t think he even understood me the first time I said it because of how choked up I was. I cried on his shoulder for a bit, right there in front of work. We just walked around for a while and talked.

Everyone at my job back home was so supportive. Between the president, vice president, HR, people on my team, and everyone in between. They all did their darndest to get me home.

That was on a Sunday, the 27th of September, my own personal worst day of my life. Two days before my wife’s birthday on the 29th. Happy birthday babe! I ordered her flowers to get there day of her birthday. She didn’t get to see them for a few days.

Round one:

I got back home to Augusta on Thursday or Friday. Pretty good timing for scheduling such a long flight. I credit my company and the people who work for it entirely.

I land and see my wife outside. We embrace for quite a bit. Before this deployment, we hadn’t been separated since we started dating for more than a week. Our ENTIRE relationship spanning from 2014.

We start getting in the car to go to the hospital where my wife’s mom is staying with Luca. Our extended family is at home watching the other kids. It’s just past dusk and is dark out. Mind you, Luca, once he got sick, didn’t want much to do with me on the phone. He gets weird once he’s not around you every day, and his sickness compounds that.

We get to the hospital and up the elevator to Luca’s room. Because he’s an AML kid, he gets one of the biggest rooms on the floor. I walk in with tears in my eyes but Luca didn’t want much to do with me at first. I get situated and familiar with the surroundings and staff. A little offended and sad about Luca wanting nothing to do with me, but ok otherwise.

At this point, we only knew he had AML. And at the beginning it didn’t mean much more me either way. I “knew” he’d survive. I “knew” he’d be ok. Which version of leukemia he had meant very little to me at the time.

I spent the next couple of days and nights at the hospital. And eventually, I decided I could use a hot shower and legitimate bed so I went home to see my other children for the first time since getting back. My youngest, Claire, started walking while I was gone. All the kids were excited to see me and I cried with all our family.

This next stage of 3 or so months, we spent in and out of the local hospital in Augusta. Luca KILLED this phase. He was such a champ. Seriously, his entire diagnosis, he was an absolute monster.

He’d do 4 or so weeks of chemo and recovery until his counts came up in the hospital before spending a week or so back at home before starting another round. He got to spend Halloween and thanksgiving at home. Both times I’ll truly treasure. He dressed up as The Hulk for Halloween, a costume he stole from his younger brother, Cooper.

At the hospital, we’d run around the hallways on the floor all the time. Playing hide and seek. Playing tricks on all the nurses. We’d go see the koi pond and the fountain outside the hospital. We’d run around the entire hospital. We’d climb up and down the stairs with the fish murals on them. He loved that staircase.

We were on the 5th floor so we’d typically take the elevator up and down. On the elevator, there was a graphic of this one kid who was dressed as a firefighter and had his hose pointed at us. I’d always pretend like he’s squirting us and Luca and I would pretend to avoid it. That elevator was always such a grounding sight for me, returning and leaving the hospital. Since I’m a smoker, I’d see it often.

Back to Luca. After his first round, he wasn’t in remission yet. He still was at 6 or 7 % blasts in his labs. One of the doctors assured us that’s only because he was at such a high level when first diagnosed (95%) or something crazy like that. Looking back, I think he was simply trying to comfort us. Because now we know very well what not being in remission means after not getting there in the first try.

During that first round, my wife was focused on his sub type and translocations. She was doing all the research. And she was nervous. I could tell. I rubbed everything off like it was going to be ok because I truly believed that. It didn’t matter which one he had, because he was going to beat it. Regardless of how bad it is.

There were a few things we found out then. That he had the KMT2A mutation and that his translocation wasn’t good. But we were out of the hospital for a week.

We enjoyed Halloween a ton. I was only working on weeks when Luca was in the hospital and was going straight to the hospital after work most days. My mother-in-law watched the kids back home for most of it.

I could tell my wife was done with hospital life after that first month and was happy to be back home for however short it was. That was a great week.

Phase two:

Phase two of chemo comes and we recruit my own mother for help with the littles while Luca is an in-patient and Ashley again stays with him the whole time. The second round was rough for us. We were pretty done being separated for so long. We were really starting to feel the stressors of it all this round even though we didn’t have any reason to be more anxious or nervous about how Luca’s treatment was going.

End of round two came with a ton of happiness for us. We were able to leave the hospital the day of Thanksgiving. The Doc gave us permission even though his ANC wasn’t quite as high as the team would’ve normally liked, but it was coming up, and it was a big holiday for us, even if we couldn’t spend it with much family. We had a great time that day.

We spent most of the week just enjoying time all together. The 2nd round really did a number on us in terms of missing each other. Luca and I would go through drives around the neighborhood with him in the front seat which he absolutely loved.

In between rounds 2 and 3, we went to Atlanta to visit the bone marrow transplant team there since they don’t do them in Augusta. It’s about a 2-hour drive for us. We liked the team a lot and the facilities. I think Luca really enjoyed the drive and going somewhere different. I put him in the second row of the van instead of the back where he normally was just so he was closer and more comfortable. They gave us some gut punches at the meeting however. The transplant doc told us she’d need to do total body irradiation (TBI) because of a fear (unconfirmed however) that he had an abnormal cell in his previous bone marrow biopsy. She told us everything TBI entails and it terrified me.

It’s something that haunted me from that moment forward. IF he survived, he wouldn’t be able to have kids, probably wouldn’t grow to his full height, and could potentially have a serious learning disability. The sentence though that stood out to my wife and I was that “he’ll probably be able to live on his own”.  “What is that about?!” I thought. If he survives, he’s going to have some serious issues now!? I felt like they were caveating his entire survival.

Anyway, things go ok enough and they seemed fairly confident everything would go well because we had his younger brother Cooper as a perfect 10/10 bone marrow match.

On the drive back to Augusta, we get a phone call about halfway through… It’s Luca’s primary oncologist. He calls to tell us that the Flowcytometry came back NEGATIVE!!! We freak out and take the biggest deep breath you could imagine. He does caveat the results with the fact that this was preliminary and that they need to do the much more precise MRD testing to find out the real truth. But for the moment we were elated. I took a huge sigh of relief KNOWING that my son would be ok. Everything is going to be ok, and my son will live! I can take the pain and suffering of being a separated family and having to do a million doctors visits. Do your worst, just ensure my son is ok.

Not 20 minutes later as we were closing in on Augusta on the main highway (I-20), we come up a large hill and just as we get over the hill, I notice an immediate backup of traffic RIGHT in front of me, maybe 20 meters ahead, completely stopped cars. I’m going about 70 or so MPH and stopped as quickly as I could, BARELY avoiding hitting the car in front of us. I look back into my rearview mirror and notice the vehicle behind me isn’t reacting in time. I knew he was going to hit us immediately but didn’t have time to say or do anything besides brace. He smashes into our trunk and pushes us violently into the car in front of us. I look up and Luca and Ashley are ok. Luca, ever witty, says something along the lines of “daddy, don’t stop so hard!”. I had to enjoy that even though my heart was racing a mile a minute.

We pull over to the shoulder of the road and the driver who hits us goes to the other side. My wife and I are severely shaken up. Luckily, the people we hit in front of us are from the same area and actually knew about Luca through mutual friends. After normal police procedures, they determined the van wasn’t safe to drive home. So, the nice lady offered to take us home in her car. One of those moments I’ll be forever grateful for.

I couldn’t believe I moved Luca up to the second row that day. For whatever reason, everything in my body told me this was a great idea. I don’t think he would’ve gotten hurt either way, but it would’ve been just THAT more terrifying.

The van took forever to get fixed and we didn’t have it back until we got to Atlanta. The company that serviced our van had lost their one good employee. But no biggie. Luca was ok. Ashley and I were ok. That’s what was important.

We spent the next couple of days at home enjoying each other’s company before Luca started round 3.

Round three:

The day we came back to the hospital for round three, we started with a regular clinic visit. Normal, run-of-the-mill type stuff. Sit in a doctor’s office for several hours, Luca watched his tablet while we kind of lounged around. They took some labs, looked at him, etc. We thought nothing of that day.

We are about to finish up but have one more meeting with his other oncologist. A little background, this doctor is the wife of the OBGYN that delivered Luca. He also delivered my two other youngest children. So, while her husband’s job was to deliver Luca, her job was to try and keep him in it.

Back to the meeting. We get there before her. We’re sitting down casually. Completely unsuspecting of what she’ll say.

She walks in and looks like she’s on the brink of tears. Ashley and I sat up in our chairs like our parents walked into the principal’s office after we got in trouble in school. Her voice cracked as she greeted us. We knew something was wrong.

She sat down. She started explaining how the initial Flowcytometry results were preliminary and not “end all be all”. We know when doctors are stalling and needed to hear what she had to say. Finally, she came out with it. The more precise MRD tests indicated he had about a 0.3% blast count. That doesn’t seem like a lot, I know. But it meant his leukemia was not just resistant, but wasn’t going away as the doctors had wished. After two rounds of chemo, it was supposed to be gone. Completely gone. It wasn’t. And now, we had to deal with the prospects of a more difficult journey than anticipated.

Meanwhile, Luca unwittingly watched his tablet in the corner as we talked. To this day, I have no clue how much he ever gathered from our talks with the doctors. Imagine, being in a room with a doctor talking about your mortality and not paying it any mind. I almost envied him in that sense.

So, this was devastating news to us. We could handle being in the hospital. We could handle being in car crashes as long as everyone is safe. We could deal with the daily stressors of life. As long as Luca was ok. And for the meantime, he was. But, when you receive bad news like that about your child, it increases your stress and anger levels tenfold.

So, to compound these stressors, the two giant rooms reserved for long term patients on the floor were taken up. Not by AML patients, but by two pretty normal patients, from what I gathered at least. No HUGE deal. But when you’re planning on being in that room for the next 4-5 weeks, it matters. We got a super small room we could barely fit our stuff in. It was stressful. Neither of us were happy. Luckily, Ashley and Luca didn’t have to stay in that room that night and were quickly moved to the larger room since it was vacated shortly after we got to the floor.

I wanted to seriously make a point of that. Again, normal things like that aren’t a big deal. But when the other giant stressor is presenting itself as a giant uncomfortable elephant in the (small) room, it makes it that much worse. Ashley and I fought that day. I don’t remember about what. It was small. But the elevated stress levels are not something I can forget, no matter how much I want to.

As far as the third round went, it was ok. Fairly similar to the other two rounds. With some caveats, of course.

At this point, Luca had lost a lot of hair. We joked he looked like an old man. He seriously looked like an old crazy man who worked on broken down lawn mowers all day and had crazy conspiracy theories, which Luca definitely did. Don’t all 4/5-year-olds?

This was the month of December mind you, and Christmas was coming up. So, I took the liberty to buy some Christmas lights and decorations for Luca’s room. I love Christmas. I love decorating for it. I love watching Christmas movies. I love eating and drinking Christmas related stuff. I love giving gifts. So, this round was especially difficult for me, travelling back and forth from home, to work, to the hospital, and back home, most days.

I set up the whole room so nicely, I have to admit. Lights strung across the walls. A little Christmas tree, and some extra decorations here and there. It was quaint, but enough.

Around this time, my in-laws were so nice to find a Christmas light company that hung lights on houses. They somehow found the nicest guy of all and he decided to do our house up, pro bono. I couldn’t believe it. On one end, I LOVE doing the lights for our house. It puts me into the holiday mood, and it’s a point of pride for me. But man, did they do a great job. It would make Clark Griswold look like the Grinch.

Anyway, the third round wasn’t particularly harder or easier than the previous two rounds in terms of medical stuff. Most days are spent just lounging around the hospital. For Luca at least. When I’d be with him there, I’d try to make a point and go for walks, up and down the stairs, go see the dinosaur paintings, etc.

What did suck about the third round was the wait to come home. For whatever reason, his ANC (the numbers used to indicate how healthy someone’s immune system is) weren’t going up towards the end. So, a few days before Christmas, we were starting to anticipate not all being home for Christmas.

Whatever, we’d make do. Dammit, we were going to have some sort of Christmas thing together. We were going to get a tent and put it in the front lawn of the hospital even. Granted, the hospital turned that down (COVID times).

The day before Christmas we decided that I’d take the kids and my mother-in-law to the hospital and we’d do a small gift exchange thing in the parking garage. Damn, was that day cold. Freezing fucking cold. We couldn’t help but just cuddle up inside the two cars. Luca and the kids had a great time nevertheless, and we had a ton of presents sitting under the tree waiting to be opened once Luca returned home.

I can’t remember the number of days it took to finally get home. But I do remember the day we all got to go home and be together again. While we were packing up, Luca was just dancing his butt off. He was so happy to know he was going home. To be with his parents, siblings, and dogs. I remember listening to Low Rider and Luca loved it.

The next morning was particularly great. Luca and I woke up early and I watched him go plug the tree in to see all the presents Santa laid down for him.  He’d do this little scootch thing whenever he was happy. He definitely did that this morning.

The kids all unwrapped their presents and all got what they wanted (and then some). It was an amazing Christmas and I made the best damn prime rib of my life.

BMT and Life in Atlanta:

When January came, Ashley’s father and step-mom came down to visit and hang with us while we go to Atlanta and do some initial clinic visits before we all moved to Atlanta.

These meetings with his doctors and appointments were relatively easy. For that week at least.

However, we were faced with a seriously daunting future for our son this week. I wrote earlier about our conversations with the docs in Atlanta and how they caveated Luca’s existence with realities he’d be facing if he survived due to the treatment he’d be receiving in Atlanta. Whether that be learning disabilities, he wouldn’t be able to have his own kids, stunting his growth, there was seemingly a million side effects he’d be facing if the bone marrow transplant worked.

At our house in Atlanta, we met some neighbors, walked around, and got comfortable in the house we’d be spending the next several months at. My in-laws brought their two golden retrievers and the kids had a blast with them. I remember eating some of the best Chinese food in my life that week.

We spent about 3 days there just hanging out and having fun in between appointments. Then went back home to Augusta. We spent another week and a half in Augusta where Luca had some clinical appointments in the meantime. But in general, we just spent time together. The longest time all together, fairly uninterrupted as a family. Normal for a week or so. I remember those days so fondly.

At home, Cooper and Luca really bonded that week and a half. They slept in the same room together. Cooper was just coming of age to speak and play on that next level a 4/5-year-old like Luca could have fun with. Just watching them was amazing. It was always such a dream of mine to watch my sons play like that. I’d make them popcorn and pizza and watch them on the couch downstairs in the basement just watching movies and wrestle. To this day, Cooper remembers this and comments about it frequently.

After that week and a half, it was time for Luca to start his bone marrow transplant in-patient process. So, I took Ashley and Luca to Atlanta to get settled into the new hospital in Atlanta. We left early in the morning and got there with no issues. We had visited it multiple times at this point. After check in, they brought us to our room. Which was kind of meh. The nursing team was super nice. And the amenities were better than Augusta, but they were pretty strict. But overall, not bad.

This hospital didn’t have two hospital beds like Augusta, and the day beds for the parents were really uncomfortable, so Ashley had me run to the Walmart for a mini-fridge, a mattress topper, and some other small stuff. I spent the next few days in between the house in Atlanta and the hospital just making sure Ashley and Luca were good to go before I came back to Augusta.

This first week was really important for Luca. He started (and finished) total body irradiation (TBI). Basically, shooting a ton of radiated energy into his body. Something that, to this day still terrifies me. This was the part that was going to cause him all the potential side effects in the future and I couldn’t help shake that from my thoughts. The actual radiation part was short for Luca. 3 sessions total. In and out within an hour or two.

At the end of this treatment, Luca got to ring the treatment bell. The bell that indicates you’re done. The one you see in feel good videos from across the internet. While I got emotional, and cried so hard watching him ring that bell, I couldn’t help but feel it was a cop out. Luca was so far from being “done”. The bell only indicates the end of a very small part of his cancer journey. Why should it even be there? I get it, I guess. Make people feel good. And I did, I really did. But again, I knew it meant very little if he couldn’t get through the next stage. They gave him this giant stuffed t-rex for him being so good during treatment. I could see that team crying themselves. It was truly a beautiful moment. Cooper sleeps with this T-rex to this day. Something, I’m sure, Luca would be PISSED about (sorry buddy).

I left the day after, to go back to work and to go back to the rest of the family that my mother-in-law was taking care of while I was in Atlanta. Between her and my mom watching the kids while I went to countless doctors’ appointments, work, or otherwise, I’ll be forever grateful. On one hand, I felt an obligation to Luca and Ashley to be with them as much as possible, but also a fear of my other children missing out on any parental time while we were both gone. The constant struggle between those two thoughts ate me up inside.

My mom came up three times from Florida to help with the kids for extended periods of time.

It was good getting back to work that week. It helped get things off my mind, if even for 8 hours. I do have to say, even if I wanted to do, I don’t think I could leave my company. The amount of compassion, understanding, and help they offered my family and I was astounding. If I needed a day off, I could take it. They all pitched in to help with the meal train. They didn’t overload my plate with anything. They checked in on me. Everything you could ask from a company you work for.

The next weekend, I had to bring Cooper up to Atlanta with me for the bone marrow transplant since he was Luca’s donor. He was adorable the whole time through, and a real trooper. The first day, he (Cooper) just had some preliminary appointments to deal with before his big day. After those, I took him around to target to grab him some shoes since I apparently forgot to bring his to Atlanta. I got him some light up spiderman shoes. The second Luca saw them, he wanted his own pair (of course).

We all slept in the same hospital room that night. And Cooper would not fall asleep. He was getting on Luca’s nerves that day. Ashley and him woke up early for Cooper’s surgery where they’d extract some bone marrow from him to put into Luca since the radiation effectively killed off Luca’s existing marrow. Cooper did great! And when we got back to the room, we had the both of them just play with toys. Luca was not happy with all the attention Cooper was getting. At all. And Cooper was annoying Luca with every bit of energy he could.

That day, they brought in the processed marrow from Cooper and started pumping it into Luca. You’d think it’s a big surgery or something, but it’s as simple as hooking him up like you would with an IV. The beginning process of this is fairly tedious and redundant because the fear of hooking up the wrong bag is worthy of such a process. If they’d had accidentally grabbed the wrong bag from the lab, it would’ve killed Luca. That serious.

The bone marrow transplant process can be painful and tenuous. Most patients will not be able to walk at first, for they don’t have the strength needed to do so. For most, it’s hard to keep food down. Most sleep all day long. The farther away between the donor and person getting the marrow, the higher chance of graft-versus-host disease (GVHD).

Luckily for Luca, and perhaps, unluckily too, Luca had some of these symptoms for about a day or two. He was tough as all hell. No matter how much I’d like to say he did so well because he’s my son, this was mainly due to his close match with Cooper’s genes. He was exceeding expectations for progress in his recovery. He hit every benchmark in record time. The team at the bone marrow transplant center has some to-do lists for patients every day. They have to move around a little, do breathing exercises, bathe, and change their sheets every single day. Most patients are way older than Luca too. None higher than 18 since it’s a pediatric hospital, but most were 12 or above.

For the moving around part, they were required to do 10 laps around the desks, every day. They could do so by walking, riding a bike, or whatever way they wish, as long as they moved their body to do it. Within a week, one day Luca did over 30 laps which came out to a whole mile on the bike! I was so proud of him. It really seemed like Luca was turning a corner and he was kicking the shit out of BMT.

I got more alone time with Luca on these weekends than I had in a while. 2-3 straight days of just him and dad. We had so many memories then. We’d play Mario kart and he’d always pick Mario. I would be Luigi or Waluigi. He always wanted to play the airplane level over and over. I didn’t mind. We went on a lot of walks too. Just around the hospital. To the cafeteria. The garden, wherever. We’d also play this game where he’d get in the wheelchair and I’d steer him wherever he said to go. “Left, right, straight, backwards” were the commands. I’d pretend that we were about to hit the wall so he could make a quick decision and learn his directions quickly and it really did work. That kid knew his left from his right really well.

For a few weeks, I would rotate with Ashley in and out of the hospital. I’d work my shifts and come to Atlanta on my weekends so she could get a break at home while I stayed with Luca. This is where I did the majority of my driving back and forth to Atlanta and our home in North Augusta. It’s about a 2-and-a-half-hour drive, depending on the traffic. I’d religiously listen to my podcasts, catch up with family, and listen to some of my e-books. Sometimes, I’d make the whole drive without listening to anything and just think. And sometimes, I’d just listen to music that’d make me cry. Those lonely 2.5 hours really gave me time to think. It made me reflect. It made me wish. It made me happy, sad, angry, and excited all in one drive. I’d be lying if I said I didn’t rock out to some serious cry myself to bed emo rock.

After 3-4 weeks of this, it was almost time to bring the rest of the family to Atlanta where we’d stay for the next 2-4 months, depending on how he handled life after BMT. They want you to be within a 30-minute drive from the hospital. If he spiked a fever at all, we had to take him to the ER immediately. This is pretty common among most cancer patients. Their weaker immune systems cannot handle being febrile for a very long time.

Anyway, after getting the word that the docs were ready to discharge Luca (and subsequently Ashley), I packed the kids’ bags, and put everything in the car. We were finally moving to Atlanta for the meantime. I can’t remember if it was the same day or the day after we arrived that Luca was able to come to his Atlanta home. He walked in the door and Cooper and Claire immediately gave him the biggest hug. They were so excited to be reunited again.

Before I keep going, I wanted to say our oldest child, Peyton, stayed with my mother-in-law as we went back and forth to Atlanta much of the time because the house in Atlanta didn’t have a private place to do her schoolwork since it was mostly wide open. My sister-in-law, Carly came and stayed with us for most of Atlanta so I could go back and forth from home to Atlanta on my weekends, and so Ashley could go take Luca to the hospital if he spiked a fever and I couldn’t be there in time.

Depending on how Luca was doing during this time, I’d take a week or two off of work. So, many times we’d be spending a lot of time together at the house in Atlanta. We ended up loving that place. That neighborhood, and our neighbors. The people we were renting from were extraordinary people. Sarah and Chris helped our family more than they could ever know.

The house itself was a two story and we rented the entire bottom floor. Maybe 1500 square feet in total. 3 bedrooms. 2 bathrooms. The aesthetic inside was really cool. A bunch of old posters on the wall and the furniture matched the aesthetic. Kinda modern, kinda swinging 20’s, kinda 80’s. I remember the shower being incredibly strong, pressure wise. I don’t know why I’ll always remember that, but I will.

The house was on a little dirt and gravel side street in a well-off neighborhood called Candler Park. It was an odd location. One mile west and you were at “Little Five Points”, a neighborhood that was filled with old record stores, hippier stores, people busting, and a few interesting spots. A mile north, some of the nicest property in Atlanta. The neighborhood we were in was mainly occupied by doctors, business owners, and upper-middle-class families. We could afford this house only due to our insurance company supplying 10k dollars for lodging per year if the situation warranted, and ours very much did.

The neighbors were great. What I’d do to move them all here. I really admired the small community they had in that pseudo cul-de-sac/gravel road where the kids could roam free and the adults could easily converse.

I’ll start with Matt and his family because, for Luca’s story at least, there’s no one else I could start with. Matt lived behind us, on the other side of our backyard. He’s a really friendly guy, and introduced himself first to my father-in-law when we visited the first time. He’s got black hair, glasses, and a smile you can clearly see from roughly 30 yards away, the distance our houses were from each other. In between our houses lied a firepit and a grill that we used every weekend. He had strung blue Christmas lights around the trees surrounding the firepit and when they were on, it was free game to come and hang out. Matt had built a chicken coop shortly after the Covid-19 pandemic started and he was damn proud of that thing, and his chickens. Any time he saw us outside, he’d extend an extra invitation to come see the chickens. Luca and the kids loved to see those chickens. And Luca loved Matt so much. If he saw him out attending his coop in the morning, Luca would shout across the backyard “Hiii Mr Matt!”. And Matt was always glad to see Luca and would wave and say hi back, asking Luca how his day was going. Those two really forged a friendship while we lived there.

To the right of our house was the Pendletons. They had two children, Otto and Banks, who befriended Luca quite quickly and they had an awesome playground in their backyard. Luca and my family would spend a significant amount of time in their backyard just hanging and playing around. Their house backed up to Matt’s chicken coop too. We will never forget this family and in particular, their backyard where we spent countless hours getting out of the house in a place, we felt safe due to Luca’s health.

Above us, in the apartment upstairs, there was Daniel, Gina, and Chris. They were recent college graduates and all worked in some sort of film or cinema type jobs. Funny enough, Daniel worked on the set of Stranger Things out in Atlanta.

To our left was Tom and Arianna, who had two young adorable daughters. They were also great and I had quite a few great conversations with Tom. One day, Tom gifted me some flap steak from the local butcher and I reminisce about that meat. I cooked it damn near perfectly on the grill next to the firepit.

The first month we really got our bearings and made Atlanta our home, even if we couldn’t go anywhere that was crowded. Lots of going on walks in the local park or some trails I found in the area. When I was in Atlanta, I insisted we went on a walk every night. We’d go around the corner next to the park and go over to the elementary school where there was this giant staircase Luca LOVED to run up. For whatever reason, the first time I ran up there and saw the view I screamed the iconic line from the Titanic movie, “WOOO I’M THE KING OF THE WORLD!!!!”. From that day, Luca would do the same every time he got to the top.

Our first month in Atlanta, together, was going great so far. Luca seemed to have a ton of energy, everyone was fairly happy, and we were together, something we weren’t longer accustomed to.

About the end of February, Luca started taking naps again. He was getting grumpy. And we didn’t know why. Are these effects from his BMT? Did he catch a virus!? What could be going on? He was fine last week and now, he wants to sleep for 12 hours a day. Well, 12 hours turned into 14-16 hours a day, and when he was awake, he wasn’t happy. He didn’t want to play. He didn’t want to talk to anyone. What happened? He was just running around with his siblings last week, and now he’s yelling at his brother every two seconds, who, by the way, has no clue why his brother is mad at him. This wasn’t normal angry. He was angry to be angry. It was different.

We were really ignorant to what was going on and we had a million and a half hypotheses regarding his sudden change. He looked depressed. Where had our happy boy gone? Not a chance this was from leukemia, he JUST had his BMT. It doesn’t come back this quickly. At least, not usually, right?

I don’t have to keep this secret… We thought it was a virus. Maybe a common cold. But he tested negative for everything. What could it be then? The doctors tested him over and over again and it was nothing, and he wasn’t spiking fevers, so there was no reason to hospitalize him again, yet. Let’s just monitor this and hopefully his birthday will cheer him up. Perhaps he’s just still tired and recovering from BMT.

March 2nd is his birthday. We got him everything we could think of getting him. He deserved it, dammit. The “big” gift we got was a spiderman bicycle. We figured, since he loved the bike so much in the hospital, and spiderman (of course) that he’d love this thing.

Most presents that he opened, he showed little to no emotion. Gifts that normal 5-year-olds would go insane over. Ok, WHAT IS GOING ON? Why is he so upset? Why is he sleeping so much still? Why is he grumpy? I just want to make him happy and enjoy his birthday, but this was not in the works for his 5th birthday apparently.

Days later, he spiked a fever. Is this a virus? Can they treat it? Could his immune system handle it?! No clue. They did more and more tests on him to see what could be going on. Initially, nothing came back positive. So, again, not a damn clue what is affecting him like this. The doctors knew it couldn’t be his leukemia coming back, yet, at least.

After being in the hospital for a few days, and not getting any answers, I decided to return to work for a week, and then come back.

While I was home the doctors decided to test his blood again for leukemia. They hadn’t at this point after the BMT because statistically, it wasn’t going to come back for a while, if and when it did.

The night before the test we were anxious, yes. But more so, I remember Ashley and I not necessarily being optimistic per se. To be optimistic, I feel you’d have to know the importance. We were indifferent. We thought he wasn’t feeling well because of some virus.

I went to work the next day and everything was fairly normal the entire day.

Then, afternoon came. Ashley called me about an hour before the end of my shift. Things were settled for the day and everyone was in that after lunch lull you get where you want to just take a nap. The phone rings at the desk next to me, the phone Ashley has saved and my coworker Jay answered it. He hid it well but I could tell something was wrong. I grab the phone and Ashley’s voice is quiet, and scared. She didn’t want me to cry right on the spot and knows I’m in a large open, fairly quiet room where many people could hear me. She asks if I could find a private phone.

I rush down to a small room with a phone and call Ashley back as soon as I could. Before I dialed the number I closed my eyes, took a deep breathe and started pressing buttons.

She answered almost immediately and got right to it. She could hold in her hysteria and tears just long enough to quickly and forcefully let out “Luca relapsed”.

Our newly 5-year-old boy. His blood was filled with leukemia cells.

Now, these weren’t confirmed leukemia cells but the team was adamant. They believed this to be his leukemia coming back. It was as close to confirmed as you can get without the actual confirmation.

For the next 10-15 minutes we sobbed uncontrollably to each other over the phone. I was almost worried someone outside of the room would hear me and walk in, checking if everything was ok.

After getting over the initial shock and sadness, I knew Ashley had to do, and I needed to find someone I know really well and cry. I wiped my tears, smearing my snot and wet eyes all over my sleeve. I got up, took a deep breathe again, put my head down, and headed to where I knew my best friend Jimmy would be.

I see him from about 15-20 meters away and make eye contact. I motion to him that I need to talk. He could tell something was wrong. And I walked, silently, with him as he followed me to a cave, in what I could only imagine looked like a spy and their handler getting out of the public eye.

We walk into the small room I called Ashley in, and just as Ashley had done with me, I could only barely get out the news, “Luca relapsed”. Except this time, I was less understandable than my wife. As I was in the middle of a breakdown, Jimmy is wondering what is going on. After 20-30 seconds of hysteria, I finally get the news out clearly and concisely.

I cried in my friend’s arms, a friend who visited Luca in the hospital when he was born, a friend who my own son called “Uncle Jimmy”, for about 5 minutes straight.

Reflecting on this moment now, I realize this moment hurt worse than the initial diagnosis. We had so much hope, and almost all of it was sucked out of my body with two words.

Post-relapse:

I went back to my desk, next to my boss, and told him the news. I can’t say I did a great job hiding my emotions. I logged out of my workstation, grabbed my things, and Jimmy walked me out to my car.

I drove home from work in silence. When I got home, I found my other father-in-law, Bob, taking care of the dogs and he greeted me with a giant hug. News travels fast in our family. He was taking this news particularly hard himself. What a help he was to us while we travelled back and forth to Atlanta and Augusta.

I packed all my things immediately and started that long, boring, and monotonous two-and-a-half-hour drive back to Atlanta. Of course, I hit traffic getting to the hospital. Atlanta traffic, on the highways in particular, are miserable.

I arrive in the parking garage and start my long ascent up to the floor. I was only gone for a few days but the embrace Ashley and I shared was as if we hadn’t seen each other in years.

I look down on the bed and Luca is not doing well. I could tell immediately he was grumpy and not wanting anything to do with me, or anyone else for that matter.

I stayed for a few hours before calling it a night and heading back to the house in Atlanta. I tried to pack for a decent amount of time because I knew I’d be gone for a couple weeks, likely.

A break for some positives in this story:

It’s no secret that I’m a diehard University of Miami Hurricanes fan. I joined a discord community run by three podcasters that do a show called “The Orange Bowl Boys” or “OBB”. This group, which is basically a giant chat of Miami Hurricanes fans, very much helped distract me from the trials and tribulations of what had become my life at that point. They’ve been there for me, and I consider many of them friends for life.

Well, one day, shortly after arriving back in Atlanta, I came up with the idea to get Luca a signed football from Manny Diaz, the then coach of the Miami Hurricanes. I figured, there’s no way they could say no to a little kid with cancer. They didn’t, but they definitely let me know it’s not so easy as giving them a call and they’ll send something. There’re a million compliance rules they had to follow, and since this was Covid times, it would take even longer. Well, I didn’t know how long Luca had at this point. Yes, I had hope. But it was minimal during this week. The news of the relapse after his transplant brought his chances of survival down to abysmal numbers. Not only does the relapse indicate his leukemia is strong, the quickness in which it returned indicated it might be much worse than we had even imagined.

So, after going back and forth with the university for about two days, I said enough. I put out a feeler in the discord to see if anyone at all had connections to the athletic department and could do me a favor.

How little did I know how much that post would ignite a light in our family we had so desperately needed.

Immediately, the entire group basically took up arms and reached out to every big name in the Miami Hurricanes community as a whole. One person in particular, who wanted to remain anonymous (let’s call him Freddy), actually got a hold of a Hurricanes insider and speaking head, Brad Tejeda through twitter.

Brad reached out to me and we started chatting. Little did I know he had already reached out to the head coach himself, and things were happening behind the scenes.

The next morning, we got word that we were about to get some phone calls. Some of the coaches on the team FaceTimed us and it was awesome, even if Luca was being super shy on the phone. By the end of the day, Manny Diaz himself mentioned Luca at his press conference and I started receiving messages left and right. It was insane. Additionally, Manny Diaz said he had some stuff heading our way for Luca and the rest of the family.

Within a week, Luca got all of us his gifts from the Miami Hurricanes. A personal signed football from coach, a bunch of t-shirts, some gloves, and a million other things I can’t recount right now. Another very generous fan gifted us all our own new jerseys. A different fan gifted us tickets to a game for the upcoming season.

We even had a Facetime meeting with Coach Diaz and he brought us around to the entire football team at a practice. It was awesome, even if Luca was being shy (again).  

For the week all this was coming about, I was contacted by so many people I can’t even begin to start thanking them individually. My favorite player, Ed Reed, even tweeted about my son. It sparked life into everyone in our house. At our family’s darkest hour, we were lifted in everyone’s thoughts and prayers, and the entire world was hearing about Luca. I cannot stress enough how much this all meant to us.

All of this just because I wanted a signed football for my son. To the Miami Hurricanes, Coach Diaz, Brad Tejeda, and the OBB, I’ll be forever grateful.

Back to the hard stuff:

I’ll be honest, the next 2 months were some of the best times we had during the diagnosis. We knew our son’s outlook wasn’t good. We knew his chances of making it were little. But seriously, those 2 months were fantastic. We spent every moment we could together. All together. And we cherished each moment so much more.

We got word from the doctors that we were cleared to start taking more risks. As you know, we weren’t permitted to do anything in public with Luca. Parks were ok. The hospital was ok, of course. But the idea of going inside anywhere, or any outdoor place that was crowded, during a pandemic, was strictly prohibited. His immune system just wasn’t up for the task if he got sick.

So, for the past 6 months, we could do nothing. What shall we do now? We had to stay in the immediate area.

One day, we went to Stone Mountain. We debated whether we should go up in the ski lift, or climb up the mile long trail. We decided to strap Claire to my chest, and Cooper, Luca, and the rest of the family will make the walk. We’d go slowly, and find our way at the top as quickly as we could. Luca picked the hardest route, insisting on finding the highest rocks in the way, and climbing those on his way up. He loved climbing. We had to take a few stops, but Luca was determined to make it up the mountain. And dammit, he did it. This was a DAY after spinal chemo, by the way. To this day, I don’t think I’ve been prouder in my life than that moment. He got to the top of the mountain and can you guess what he said?

“I’M THE KING OF THE WORLD! WOO-HOO-HOOOO!”.

We ended up going to the zoo, the aquarium (twice) and a variety of other places in this time. There’s an awesome natural history museum near our house in Atlanta with a huge T-rex skeleton. He loved it.

One day, Luca and I went on a walk to one of our favorite places in Atlanta. It’s a really cool trail with a river running through it, and a giant pedestrian suspension bridge. It was an extremely peaceful and serene day. One of the first days of the year where you didn’t need a jacket to go outside. Luca and I spent most of that day together and we had the best time. I treasured every moment of that walk and took in the day. We talked about everything. Life, farts, his siblings, cancer, everything. I pushed him at the end to walk until he couldn’t any longer and so I held him the rest of the way back, on my chest. I can still feel him hanging there like a baby monkey hanging onto their mother. The feeling of love and security your child feels in your embrace and closeness, is not a feeling that can be replicated with anything else other than when you were a child yourself, and clung to your mother the same way.

That day on the walk, I got some of the best pictures of Luca too.

A friend of mine from work who is a helicopter pilot in the Army also gave Luca and the entire family, a grand tour of his base in Atlanta and Luca and the kids got to see some real life helicopters, and it was awesome!

You may be asking yourself, how is he doing this well? How’d he go from the abysmal state after finding out he relapsed to this? Well, I’m not entirely sure. They started giving him some extra cells from Cooper in an effort to elongate his life until we could get into a clinical trial. See, until you’re 120 days out from transplant, you’re prohibited from going into a trial. And some, if you’ve relapsed, will also not accept you. It sounds cruel, but they’re doing their best, and only have so much money and doctors and support staff to help save those who are in a 50/50 situation, versus Luca at the time, who was looking at maybe a 20% chance. Again, hope wasn’t lost. The month of April gave us so much happiness and hope, we were in a good mood. We had no fear that anything was coming.

Luca had another routine blood and bone marrow check at some point in April, maybe the beginning of May. These require him to go under and be put to sleep. None of those, and the results coming from them, are easy to stomach. At least the anticipation of the results.

Fine, I’ll get to it this time. The results were bad. Luca had confirmed leukemia teeming all over his body. I don’t have a better way to put this. We were in the mood to accept whatever the results were going to be. We were in a positive mindset and weren’t going to let anything affect us. It did suck, still. It always sucks. It always sucks with AML.

The day we learned that news, Ashley and I cried with each other in bed when the littles were napping, and Luca was in the living room watching TV with Carly. We knew this was further reducing his chances of survival. It did not break our will. But it sure damaged it.

While we lying in bed together, Luca strolled in with a giant smile across his face. A shit eating grin really. I don’t know what he was so happy about, but he sure was. He cheered us right up, and came into bed with us while we wiped away our tears and snuggled. Just the three of us. What I would do for that moment to be replayed over and over again in my dreams every night.

Our time in Atlanta was starting to come to an end. The doctors were discussing with us returning back home to Augusta while we awaited to get into a clinical trial that would hopefully, save Luca. They figured, we’d about been there the prerequisite time, and, well, Luca only had a certain time left. And HOPEFULLY, he’d make it through a trial. We never lost sight of this goal.

Mid-May, we started packing our things in anticipation for our arrival back to our home. Our real home. With our dogs. All together.

This step of our long journey was over. After 4-5 months in Atlanta, it was time to head back to Augusta.

One last surprise for us before we left, Luca got a cold. Of course. Just as we’re coming home, he finally gets an actual virus. It’s scary, of course. But nothing we felt like we couldn’t handle. It kinda delayed our departure, and we had to do some extra stuff at the hospital before we left. It was a typical head cold, and Luca was not happy about getting the Covid test again.

I remember, vividly, that day. He never liked Covid swabs, who does? But this time in particular was terrible. He was screaming the worst possible things he could think of at the poor nurse swabbing him. “I DON’T LIKE YOU! LEAVE!”. It broke my heart, but also angered me. What do I do though? Yell at my 5-year-old getting a giant stick stuck up his nose because of a sickness he didn’t understand anything about?

Whatever, we got over that. And we were going home. Nothing was going to stop us. Not that day.

We frantically packed the house the night prior and I had driven home to drop off that load in my car. I came back the next morning to re-pack my car and the van before grabbing everyone and driving all the way back to Augusta. That long, arduous drive wasn’t ending yet.

Back home in Augusta May 13th:

I packed my car so full, that I was the only other thing that could fit in it. Ashley, Carly, and the littles all piled into the van after the seemingly long but actually short doctor’s visit.

I arrived at the house first, meeting my buddy Jimmy there so he could help me unpack the cars. Plus, he wanted to see everyone.

About 20-30 minutes after I arrived, the van pulled up as Jimmy and I were outside finishing up. Getting the kids out of a crowded van can be a process. Luca came running out of the van with his arms wide open and ran up to Jimmy for a hug. It’s weird to think that 5-year-olds can go 7-8 months without seeing someone and still recognize them, but they sure can. Luca is normally so shy too, so him going up to Jimmy for that hug meant a lot.

When the family walked in, they hadn’t seen the house, or the dogs for months. I had the dogs outside so they weren’t freaking out when everyone walked in, and didn’t jump on Luca specifically.

After a few minutes of everyone coming inside and getting our bearings, I let the dogs in and they went nuts. Our smaller and older dog, Rocky, didn’t know what to do with himself and they were making Luca laugh like crazy. He thought it was the funniest thing when the dogs got like that.

Eventually, we got all settled in. Even though my anxiety about putting things away after trips was off the charts bad, even that wasn’t enough to make me do a damn thing that night. We ordered take out from somewhere. And I drank some beers.

Finally, HOME home at last. All together. Even the dogs.

I made the decision to go back to work that coming Monday so things were going to get even more like normal. I still took the rest of the week off, even though I’d only be missing Friday. 8 months later and things are kinda like before. It was nice. It was really nice.

Ashley’s friend, Holly, who lives in San Antonio and hadn’t seen us in over a year, decided to make a trip out to see us while she had the chance. We got back on Thursday, and she scheduled a flight for that following Tuesday. Only for a couple days.

Friday, Luca had clinic appointments all day. So, I hung back with the other kiddos as we got situated and more unpacked from Atlanta. The amount of stuff we ended up getting from donations and gifts to Luca was overwhelming, and our basement to this day (January 24th, 2021), is still full of stuff. Who knows when we’ll be able to part with some of these toys and clothes?

That night we had our first family dinner at home. Just the Raskin family. All together again. With the dogs. At our dinner table.

Saturday, we hung out a lot. Just lounging around the house since Luca was still really tired and not feeling it due to his head cold. I asked our neighbors if we could go use their playground, so we did that. The littles had a really good time but Luca did not. He just felt like sleeping and watching tv all day. That really sucked. We threw some water balloons at each other too, but mainly just hung out.

Sunday was better. When the kids went down for a nap, Luca wanted to come into the basement with me while I lifted. What an awesome hour that was. I cannot begin to explain why I cherished that hour with him so much. For whatever reason, I was in the moment. Both of us were. I barely lifted honestly. We just goofed off and laughed a lot.

He started to notice all the duct work down there and was super interested in it, following it from their starts to their terminuses. I don’t know why it was so funny to me, but he was explaining them to me like he was experienced in piping and duct work. He was constantly pointing things out and eventually finished the entire ceiling, following it with his finger and making sure I was watching. I thought it was great, so I grabbed my phone and told him to do it again. I’m so happy I got a video of that.

Monday comes and I go back to work that morning. Like I said, back to normal. Ashley’s friend Holly, was coming in the next day, and Luca had a clinical visit at the hospital with the team. They did a bunch of tests and gave him chemo.

After I got home from work and the littles woke up from their naps, we ate some dinner and went outside to light some leftover sparklers I had from July 4th the previous year. We had a good time playing with those and some other games out in the driveway. Luca stayed perched up in the trunk of my car.

After that, we decided we wanted to go on a family walk, like we always did in Atlanta, and even longer before that, when Luca didn’t have leukemia. Luca was tired from all the commotion that. His head cold wasn’t terrible, and seemed to maybe be improving. Either way, he was just tired. We begged him to go. Nope. Wanted no part of it. Then, as I’m about to take the rest of the family as Ashley stayed home with Luca, he changed his mind.

For about 2 minutes he was getting ready to go on that walk, and said again, nope. Ok, dude. Come on. Nope. Ashley was pretty sick of this too and came up with an idea to facetime using both our phones, and basically make her phone like a baby monitor while I brought mine with so we could chat with Luca and make sure he’s ok while we went around the block. While we walked, we kept glancing at him, and he was happy as a clam watching the tv. He even excitedly said “hi!” a couple times to let us know he was there, if my memory serves me correctly.

He woke up Tuesday and was not feeling well again. They got to the hospital and he was running a temperature. Great. A fever again. Our initial thoughts were of annoyance honestly. We thought he’d be getting over this in a jiffy and this temp would only hospitalize us and make our lives even harder.

I go to work in the morning. Things were fairly normal for a morning. Except of course, Luca and Ashley are in the hospital. She called to tell me the news when I was at work, and I told my bosses, and headed out.

He slept for most of the day in the hospital. While we were mainly annoyed, there was a little part of us that felt like this was worse. Something was menacing.

I got to the hospital and let Ashley go home and hang out with her friend Holly while she was in town. No biggie. Luca is going to get better; this isn’t anything he or us couldn’t handle.

That evening at the hospital, Luca started feeling uncomfortable and wasn’t breathing really well. All of a sudden, his oxygen saturation started going down. At first, nothing crazy. Maybe 95%. An hour goes by and he’s in the 80’s. I can see him laboring while breathing. Shit.

I do not do well with medical stuff and things started going badly. It freaks me out just to hear my own pulse or heartbeat. I can handle blood but not needles. Either way, this is a bad situation for me. I call Ashley and let her know the situation so Holly and her decide to head back to the hospital and they’d spend time together then. The hospital was gracious enough to let Holly stay the night with them.

Before they got there, the doctors ordered some x-rays of Luca’s lungs to see how he was doing. They couldn’t see anything of serious worry. On our trip down to the x-ray room, Luca was whining and just trying to get comfortable. He wasn’t having it. I talked to him and called him down as much as possible but he wasn’t happy. He got to the room and they made him stand up while holding a handle while they did the x-ray and I can remember the distaste in his look while they were doing it. He was crying as well. Uncontrollably. Just one of those “I’m sick and tired and everything sucks” type of cry.

I do remember that doctor for the night though. She was weird. I don’t know to this day if she knew something we didn’t.

We get back up to the room and Ashley arrives shortly after. I kiss her and Luca goodnight as I go back to be with the kids since Carly and Betty were watching the others. Again, this wasn’t anything we thought was that serious. His lungs looked fine. He was just a little sick.

I took Wednesday off of work to monitor the situation and possible give Holly and Ashley some time together while I watched Luca.

Whelp, something else was in the plans.

Luca woke up even worse. He had confirmed adenovirus. This is not a virus you want to catch after transplant. None are, but adenovirus in particular spells bad news for newly transplanted patients.

Ashley called early and said they’re going to the PICU (pediatric intensive care unit). That means things are bad. If you’re going to the PICU, they want to keep a keen eye on you. There are no doors. Just a curtain as a door for privacy. Doctors and nurses come in and out every few minutes. There’s one chair to sit on otherwise and a very small toilet, with no privacy. At this point, they’ve put a pull up on Luca because going to the bathroom would be too much for him.

I get there mid-morning and things are starting to go crazy. Ashley informs me that his spleen and belly are really extended and he’s not keeping oxygen well at all. If he didn’t improve within the next hour, we had to make a choice. The hardest choice of our entire life.

Luca needed to be intubated. And quickly if he wanted a chance to live. But the caveat was, there’s no guarantee he’d be able to come off of that machine. Ever.

How did we get here? How did things progress this quickly?

A doctor came in and showed us a new picture they took of his lungs. They were filled with fluid.

Ok, WHAT IS GOING ON?!

Ultimately, we had to make a decision. Put him to sleep, intubate him, and hope and pray he gets better, OR, see if he can do it without intubation.

He didn’t give us a choice. He needed to be intubated.

This was going all too quickly for me to process.

As they were preparing the medicine that would put him to sleep, Luca told us he was uncomfortable.

“I’m…. um… uncomfortable.”  

We had no way to know that those would be his last words.

At this point, we knew we had to call family immediately. People had to travel to get there to say goodbye in time in case things came down to that.

We called a lot of people and just waited around the hospital. There was nothing more we could do.

His oxygen saturation initially went up, and that was great. But, the CO2 in his body was starting to add up. His blood was starting to turn toxic and his liver couldn’t handle it much longer.

Either way, I left late that night to go home and sleep, while Ashley stayed with Luca. I’ll forever regret leaving that night. I feel selfish for it, even if Luca wasn’t awake.

Thursday morning, the 20th of May, Ashley called me frantically, early in the morning. Luca is getting worse. His belly is gigantic at this point and his skin has turned a yellowish color.

They have one more trick up their sleeve. To put him on what’s called an oscillator. It basically shakes his body while pumping oxygen to try and get it to go all over. Yet, Luca had no way of expelling all of this extra CO2.

I get there around 7 and forgot to grab my coffee. My father-in-law Bob brought me some later, thank God.

I get there and immediately start getting phone calls and texts from family and friends. My uncle gives me advice to urge the doctors to put him on an ECMO machine, to which the resident on shift said would be impossible, which, initially I did not take well. I argued with him but didn’t scream. We needed all the help we could get.

The main doctor came in shortly afterward.

He advised us that ECMO would not be a good idea for Luca. He continued…

He told us bluntly, maybe too bluntly, that Luca had a 99% chance he was going to die on that bed he was in. He had almost no chance to make it out of that and by trying alternative machines and surgeries would only make our son suffer more than he already had.

What do I do? Well, Ashley and I had discussed early on in his diagnosis that we were absolutely against him suffering any more than he had to. We did not want a long, painful death for our son.

But, part of me couldn’t let it go still. I could scream all I wanted but Luca was getting worse by the second.

One thing Ashley insisted on happening was that Luca passed in our house, surrounded by family. Not at the hospital with all these wires attached to him. Not if we could do anything about it.

Ashley looked up at the doctor and asked if it was possible to bring Luca home before he passed. Without waiting a second, he said that he absolutely could get that done but that we’d have to do it soon. He didn’t have much time left.

Quickly, our family, Luca’s team from his old floor, and our good friends, the Cottinghams came to say goodbye. Cooper kept asking why Luca was sleeping.

The End:

They brought Luca home in an ambulance with the lights and sirens on, just like he would’ve wanted. Ashley by his side the entire journey. I rushed home and changed super quickly before they arrived.

That drive home by myself… My god. I screamed. I cursed. I couldn’t hold anything in, and I’m surprised I didn’t get into an accident with the way I was driving.

Our family had set up a nice spot on the couch for Luca. Surrounded by his favorite toys and stuffed animals.

They brought him into the house and our two younger children were asking why he was sleeping and Cooper wanted to play still. Our oldest, Peyton, was crying already.

They lied Luca down on Ashley and I’s laps. I looked up and realized my mom had arrived from Florida. And knew Ashley’s father and step mom from Wisconsin were still driving down.

They manually bagged him, so he could breathe. We both held him tight as everyone in the room, medical staff included looked at us. Maybe 20-30 people in all.

At 6:51 PM, Luca left this earth. 8 months after being diagnosed, he was gone.

As he lied in our arms, our little boy stopped breathing, the nurse checked his pulse and nodded to us and then the doctors, indicating he was no longer living.

The entire house was crying but I could hear very little. I was in shock. I hugged him tightly again.

After a few minutes, I got up. And we called the funeral home to come in a few hours so we could get time with Luca, as a family. Together. All together. For the last time.

While I would like to expand on the next few hours in detail, it was all a blur to me. Ashley wanted to spend more time with Luca. But to me, he was dead. He was no longer in his body.

I frantically walked around the house, and started cleaning. I don’t know why. Everyone came up to me asking if I was ok. I was not. No matter how many times they asked, I was not. I guess that was expected.

I went outside to smoke a few times before the funeral home people came to get Luca. Family members were still taking turns holding Luca. And I couldn’t handle doing it myself for more than a few seconds. There was something morbid about it to me where I couldn’t stand it. His body was cold. And the color of his skin was changing with each minute passed. I did not like this, but I wanted Ashley to have this.

An emotional support worker from the hospital kept the littles busy and had them paint some things and we all took turns making handprints next to Luca’s on some blank canvases.

About 2 or so hours after Luca passed, my father-in-law Bob stepped inside to tell us that the funeral directors were there to take Luca.

They were all in suits, immaculately dressed. While they were extremely professional, I could tell they were having a hard time keeping the tears back themselves. I knew it wasn’t every day they had to pick up a dead 5-year-old.

They spoke briefly and professionally as they instructed me to get Luca and bring him to the gurney waiting outside.

He was still on the couch and everyone said their last goodbyes before the funeral.

I went to get him. As I picked him up, I noticed how cold he was. Even worse, as I was lifting him by his legs in my right arm and his back in my left, I realized that rigor mortis had set in. He was stiff. While my brain knew he was gone already, I feel like my heart hadn’t. I cried at that moment as life came tumbling down at me. My boy was really gone. And there’s nothing I could do to take him back.

I slowly and gently carried him to the awaiting gurney and hearse outside. Through the living room, kitchen, and garage. I savored every step no matter how much badly his cold, rigid body made me feel.   

Finally, I reach the gurney and set him down on it. We made sure he had his blanket with him. I know it seems ridiculous but to this day, I cannot help but feel I still have a duty, as his father, to do things like that.

The feeling of his rigor mortis haunts me to this day and I often jolt awake at night with a vivid dream of me reliving it. It’s never better.

We watched as our son was driven away, for the last time, away from home.

Afterword:

Luca’s funeral was 5 days afterward and was a really great time actually. The funeral home was seriously amazing. After the funeral, we had an awesome fireworks party in front of our house in his honor. Friends and family from across the country came to see him.

Ashley is more emotional than I in terms of our coping, but I have my moments. I’m starting this foundation for Luca, and also, for my own mental health. I need to honor my son. I don’t know a better way to do so.

Our oldest Peyton, is doing well. She is in 7th grade and getting back to life as a normal teenage girl.

Cooper and Claire still talk about Luca all the time. Cooper breaks my heart with some of his questions. Every night before bed, he tells us “I miss Luca”, and it’s become a new part of our goodnight routine.

My company gifted us a vacation that we so desperately needed and enjoyed so much. My company really is amazing and I couldn’t have imagined myself working for a more caring employer.

My grandfather died ten days after Luca. I assume, to be with each other, so he can help raise him, like he did with me.

We still have our rough days. We always will.

Writing this wasn’t easy. I’m not much of a writer myself, but I’ve found doing this to be therapeutic.

To Luca, we miss you so much buddy. I’m so sorry things ended up going this way. We thought we had more time. We thought we were going to make it to a clinical trial. Cooper is sleeping in your bed now, and Claire is sleeping in the crib. I promise we’ve set aside your favorite toys, and Cooper, nor Claire is allowed to play with them. At least, not too much. There’s still a sippy cup in the fridge we don’t want to pour out. We think it’s yours. But we weren’t sure. We just wanted to keep it there. Cooper reminds me so much of you. He says some funny stuff, but maybe not as funny as you. Mommy sleeps with Maxy (stuffed animal dog) every night since your gone.

I hope you’re up there with Grandma Claire, Grandpa Opa, Oscar, and my dad having the BEST time. We sure do miss you down here. I know you still play jokes on us. And every time I smell a fart, I blame it on YOU.

Love you forever, Lou Dog

Daddy