Scarlett died peacefully in her sleep on Sunday, December 6th. We would like to share that there is not going to be any type of funeral service or celebration of life at this time, due to COVID. We know many family members and friends who are diligent in exercising caution to avoid the disease, and we do not want the burden of potentially exposing others with a large indoor gathering.

Many friends and family have asked how they can help and expressed the desire to provide monetary donations to our family. Our gofundme site is still active as of this posting, but to be honest, what would be most meaningful to us would be that you consider donating to one of the organizations that have helped Scarlett and her friends during their time in the hospital fighting cancer. Here is a short list of just a few of the many amazing organizations that have supported us, and in turn, we would like to support:

• Candlelighters NYC - https://candlelightersnyc.org/
• NEGU (Never Ever Give Up/Jessie Rees Foundation) – https://negu.org/
• Binkeez For Comfort - https://www.binkeezforcomfort.org/
• Make-A-Wish Foundation - https://wish.org/

The following journal entry is an effort to memorialize Scarlett's life and her death, to the best of our ability.

The Beginning

To say that 2015 was a life-changing year would be quite an understatement. Not one, but three significant events for our family. I recall relaying the news to my co-workers, a group of about 10 of us out to dinner at a seafood restaurant. It’s early in the year at this time, late winter. I’m not much for fanfare, but I want to get the information out there. I tell the group that Jenn and I are getting married. That captures their attention well enough. Once their excitement subsides a bit, I tell them we have also bought a house. Further surprise amongst the group. Someone makes a comment, something to the effect of: “before you know it, he’ll be telling us they’re having a baby”. Well… yeah, that too. In fact, she’s due in September. I must say, the look on their faces as I casually informed them that we were getting married, moving into a home, and having a baby within the next 6 months or so – priceless.

As distracted and busy as we were with the moving process, and the marriage in the spring, we were so thrilled knowing that we’d be meeting our baby soon. Like any expecting first-time parents, we were nervous about the new responsibilities that would come and were left with seemingly endless anticipation and excitement about this new chapter in our lives. We learned that it would be a girl. When Jenn and I discussed names, it became clear quite quickly what we would call her. I thought it would be more difficult to decide. She would be named Scarlett. It was perfect.

Early Struggle

Sometime in July of 2015, Jenn began experiencing significant pregnancy complications. She had been very uncomfortable through much of the pregnancy, with many instances of unexplained contractions, and as Scarlett’s due date grew closer, this symptom grew stronger in addition to very high blood pressure and she ended up in the hospital. They were signs of preeclampsia, from the doctor’s assessment, and bedrest was recommended. Two weeks later, and she landed back in the hospital unexpectedly on August 7th following a routine checkup. I get a call telling me to drive to the hospital right away. Something is not right. She’s four weeks early based on her due date, but they need to do an emergency C section, or the baby will not survive. They explain that Scarlett is showing signs of distress, including a lack of fluid, low movement, and a low heart rate. All of the anticipation and excitement turns to fear. We learn that Jenn actually has HELLP syndrome, a rare and very serious pregnancy complication, which can be life threatening to both the baby and the expecting mother. I recall standing in the O.R. that night as vividly as I remember my breakfast this morning. Everything was happening so fast, it was so overwhelming. And then, suddenly, Scarlett is here. We see her getting washed up on a small table a few feet away. Breathe. A sigh of relief, and calmness washes over us. She is shaped like a “V” - meaning that her legs are sticking straight up in the air, and she will not put them down. Apparently, that’s how she had been positioned the past however many months (and, is actually how she looked for the next couple months as well). It was more comical than alarming. I held her hand for the first time, and she grabbed my finger so tightly. I was still utterly shaken by the “what ifs” of how everything could have gone wrong that night. But then she gripped my hand, and she seemed so healthy, and so strong. Her life is never something that we took for granted, and we were so grateful for her.

Scarlett

Unfortunately, most who are reading this never got the chance to know Scarlett, or, at best, didn’t get the chance to know her very well. Try as I might to paint a picture of her personality in a way that would do any semblance of justice to who she really was, would seem to be an impossible task. But I will still try.

Even at an early age, we noticed that Scarlett was quite special. This was our first child, and of course we loved her, but I truly mean that there was some unusual and unexpected quality about her. While she picked up walking and basic motor skills at an average rate, there was a certain maturity in her, as if she was beyond her years cognitively. She had an absolutely uncanny ability to understand us and to listen to what we had to say. If she did something wrong and got scolded, well, she simply wouldn’t do it again, with rarely any questions asked. Part of her personality involved an intense desire to do the right thing, and with us as her main caregivers and teachers, etc., the ‘right thing’ to her was what we told her and taught her. I can’t tell you how many times Jenn and I were simply blown away by how good of a kid she was. She seldom whined or threw any fits. There were no “terrible two” type phases. Isn’t she supposed to be acting up, throwing fits, causing a mess, etc.? She seemed too good to be true. Then there was also her intelligence. She had a certain intuition, and knack for learning, that we really admired. She learned how to communicate well at a very early age, and from a communication perspective, there was no point during her life where she didn’t seem far more mature than her age would suggest. We never could have imagined a better role model for her younger brother, Elliott, who was born 22 months after.

Despite her maturity and intellect, we’d be remiss if we didn’t mention her silliness as well. She loved hearing funny stories and she loved hearing jokes. As she grew a bit older, she came up with quite a few jokes of her own that were legitimately funny. She often had this certain sense of sarcasm when she spoke… a lighthearted and subtle sassiness… it was just brilliant, and it’s not something that I would expect from any two/three/four-year old child. Perhaps this next bit will get lost in translation, but I’ll provide just one of many examples of hilarious things that she has said over the years, which I have been diligently keeping track of since she was two. Anyway – she had just turned four at the time, and we’re talking about what type of animal each of us would be. Any animal. I ask Scarlett what type of animal mommy would be. She says “a leopard”. I assume she chooses this to mean that mommy is fast. Scarlett: “no… a slow leopard. Because she’s slow”. Deadpan delivery, just the right amount of sarcasm, and she doesn’t even break into a smirk until after we’ve begun laughing ourselves. She always made us laugh, and we never felt like we needed to laugh just to ‘go along with it’. She was truly funny.

And then there was her strength. I can’t even begin to imagine what it was like to be Scarlett over the past two years. Sure, we were with her by her side and experienced her suffering secondhand - especially Jenn, who selflessly sacrificed nearly 100% of her time to stay with Scarlett in the hospital. But the most impressive thing is just how courageous and resilient she remained through it all. No matter the treatments, medications, procedures, shots, scans, etc. that she endured, she would always find a way to center herself and let her personality shine through. No matter how sick she became, there were moments or days when she would recover, and it was as if she was perfectly healthy and happy. She rarely complained about a hospital visit, or a scan, or truly, much at all. She wanted more than anything to finish her cancer treatments. We explained to her that everything that she needed to do would get her one step closer to that goal. And so with bravery and courage that we can’t comprehend, she persevered, and she never lost that spark.

One final noteworthy aspect of her personality that we’d like to highlight, was her caring nature. This is another part of her personality which became painfully clear during the final two years of her life, which she spent mainly in hospitals. Even when she was having a horrible day, or horrible week, her eyes would light up if she had the chance to help other kids, in any way. As an example, there were times where Scarlett was unwilling to get out of bed due to how sick she was feeling from her treatments. Jenn would mention to her that there was a crying baby a few rooms over. “Scarlett, maybe you can help her stop crying by stopping outside her room and playing peek-a-boo?” That was all the boost that Scarlett needed, and she would find some way to get out of bed and make her way over to that room. Scarlett would wave, she would play peek-a-boo, she would do whatever she could to make the other kid happy. She would even give the babies and younger kids advice on how to wear their masks, and tell them that they shouldn’t be pulling on their tubes/central lines. Then she would make her way back to her own room, exhausted and proud. Another example involves the drawings that Scarlett made for other kids in the hospital. She made a variety of “pen pals” this way, and they would exchange drawings to each other. It was incredibly meaningful to Scarlett to make these types of connections with other kids who were going through some of the same struggles that she was.

Perspective

When your child is diagnosed with cancer, and when you begin to realize the ramifications of that diagnosis, the change in perspective from that point forward is staggering. Things that I thought were so important now seemed like barely a blip on the radar. I frequently think back to instances from the past. What should I have truly been worried about? What could have gone differently? Some of these memories exemplify just how drastically my perspective has shifted.

One of which: It’s summer. Scarlett is two, nearly three, and her and I are at a small park in our neighborhood. Scarlett wants me to go down the slide with her. I’m a little nervous about the structural integrity of this slide which is clearly made for children, but it’s wide enough for me to fit, and we’re having fun. I agree to go down the slide and she sits on my lap. Her legs are draped on the outside of mine. About halfway down the slide, her shoe gets caught on the edge and becomes pinned against the slide and my leg. It happens very quickly. It wouldn’t be an issue, if it weren’t for my weight and momentum, which continue to force us to the bottom of the slide. I watch as her leg from the knee-down bends very much in the wrong direction. Now at the bottom, she is sitting on the ground, screaming and crying and in pain. My mind instantly flashes to videos I’ve seen of severe knee injuries. A pattern of letters flash through my head. “ACL”. “MCL”. I can’t help it, but I’m thinking far into the future and wondering if she’ll walk with a limp. I wonder if she’ll have trouble playing sports. I feel awful. After a few minutes, her crying subsides a bit, and I can see that she can put some weight on that leg, but barely. She does not cry in the stroller during the walk home, but in the back of my mind I’m certain that we’ll need to visit a doctor. We get home, and she’s walking with a slight limp, but isn’t even complaining about her leg anymore. I ask her, way too many times, if her leg is okay, to which she repeatedly answers yes, it’s fine. I find myself studying her gait the rest of the night and the next day… and… that’s that. She was completely fine. This was the first time that I’d seen her truly appear to be hurt. I knew that she had always been tough, but at the same time, I felt so concerned for her, and so helpless. Little did I know, that just months later, that helpless feeling would multiply by a million and burrow itself deep within my consciousness.

I recall quite vividly her first official hospital visit. She’s three years old and has had a fever for a few days prior to the visit. We expect the fever to go away, as other than that symptom, she seems mostly fine. It’s now January 5th, 2019. She had gotten a few other fevers over the past six months or so. She had a number of fevers when she was younger as well. It was not enough for us to distinctly recognize a clear pattern, but we were starting to get concerned. However, each time we had taken her to the doctor previously, they said it was probably something minor. It’s just an ear infection. Or. There’s just some virus going around, probably something she picked up from daycare. Nobody talks about kids getting cancer. The fever would always clear up in a day or two and then she’d seem fine. This time however, it’s the weekend and Jenn drives Scarlett to the Parkview walk-in clinic. Our plan initially was to wait and see if it cleared up by Monday. I’m at Buffalo Wild Wings with a few friends and we’re watching the Colts playoff game. AFC wild card game vs. the Texans. This backdrop is a stark contrast to what my life will soon become. Early in the game, I get a text from Jenn saying that she has decided to take Scarlett to the clinic. I do feel a little guilty that I’m not with Jenn at the clinic. I feel a little guilty as well that she had to bring our son, who is not the most well-composed one-year old at this point. In the back of my mind I’m worried about Scarlett the entire time and want an answer to this nagging fever. On the other hand, she’s always been fine before, and this is probably nothing as well. They’ll be in and out of the clinic and she’ll be fine. Right?

Throughout the entire game, I’m anxiously awaiting updates from Jenn, but the only updates are that they’re still in the waiting room… and… they’re still in the waiting room. It wasn’t until after the game was over – so over three hours in the waiting room – that Jenn calls and tells me to head over. They think that she has appendicitis. I’m so nervous. The thought of my three-year old baby girl requiring surgery… I know it’s a relatively safe and simple procedure, but I’m freaking out a bit inside. Fast forward to me in the future – and I would give anything in the world to make this true, make her simply have appendicitis. I get to their room in the walk-in clinic, and I see Scarlett. There she is, looking weary, looking pale. I can’t yet explain it, but I’m starting to get a bad feeling about what is happening. Next, and we’re in the ER waiting room. I still can’t quite place what it is, but something just seems off. I recall Scarlett resting her head against my shoulder. She seems weak. If it’s appendicitis, why is she not having acute pain at the site, in her lower right abdomen? Now we’re called back to the ER, and they take her vitals, and an ultrasound of her appendix. Ultrasound shows nothing. I’m googling symptoms of appendicitis. Something is definitely off… right? Stop worrying about what the internet says, just listen to the doctors. Relax. They say that they will do a CT scan next. I’m asking questions to the ER doctor… do you really think that she could have appendicitis, given her symptoms and given the negative ultrasound? They say yes, it’s possible. The thought of sweet Scarlett having to lie in the big scary CT scan machine makes me shudder. She cries, but only a little. We do everything we can to reassure her behind our lead shields. Next we wait. And we wait. And we wait some more. It’s so late at this point that they need to move us to a different room in a different section of the ER. I’ll never be able to get the image of the room out of my head, for the rest of my life. It’s not one that is made for comfort… in fact, it is barren and there’s something oddly uncomfortable about this room. We keep wondering why it’s taking so long. It’s around 2:30 AM now. Scarlett is so hungry and keeps asking if we can get McDonald’s, something that was promised to her on the way to the clinic, so it’s been about 10 hours since then. Finally, a woman walks through the door. There is a face that I will never forget. She didn’t need to speak a single word. As soon as she walked in, and as soon as we saw her face, we knew. She struggled to say what she needed to say. I don’t blame her. The words and phrases that would come: “cancer”, “wrapped around her aorta”, “Riley Children’s Hospital”, “ambulance transport”. In that instant, we are crushed. Scarlett falls asleep - and I can’t eat a thing - but I still go to McDonald’s. Truthfully, it’s tough to see the road very well through the tears. She gets a toy car with her Happy Meal. It’s purple, with pink wheels.

A “Hail Mary”

Fast forward to December 4th, 2020. This 23-month span from the date of diagnosis involves nonstop treatment, which has been detailed extensively in all the journal entries posted previously on this website. At 1 PM on Friday the 4th, Jenn and I attended a meeting that involved representation from every team involved in Scarlett’s care at C.S. Mott Children’s Hospital. This was quite a group… doctors from the ICU team, palliative care, nephrology, vascular surgery, and oncology. What we thought, prior to the meeting, was that we had a decision to make regarding Scarlett’s future. That is partially true… but as we’ve realized, and come to terms with, is that it wasn’t truly a decision at all. Our “decision” to pursue the goal of comfort for Scarlett in her final days was the only compassionate path forward. The medical team was exceptionally professional and thoughtful during the meeting. They spoke in detail about potential options that could be pursued. However, these options carried extremely unbalanced risk to reward ratios, and would at minimum cause a great deal of additional suffering to Scarlett. The number of risky and invasive procedures that would all need to go perfectly smoothly and safely even for the slimmest chance of some type of success to make Scarlett better was overwhelming. Her body was so badly devastated by the treatments and procedures that she endured thus far and all of the complications along the way, resulting in the listing of: one and a half of her two adrenal glands removed, one kidney removed, severe damage to the remaining kidney and stenosis in that artery, a blood clot in her heart and a blood clot in her aorta, damaged lungs, damaged blood vessels as a result of radiation treatments, prevalence of cancer which probably still remained in her sacrum, and scar tissue basically everywhere in her torso - all of which exacerbated the risks for any subsequent procedures.  The team presented a unanimous recommendation that we pursue a goal of comfort for Scarlett with her time remaining. They expressed with great sincerity that we had done everything in our power to help Scarlett. Everything, and then some. They let us know how great of advocates for Scarlett we had been, and how much they admired us for what we had been through and how we fought right along side Scarlett through it all. I’d like to note that we have the utmost respect for the team at C.S. Mott. The way that they guided us through this process, their professionalism, compassion, and understanding, was so meaningful to us. And so, what I mean by our option of us having a decision only being partially true, is that I believe the team was aware well before we were, that Scarlett was dying. This seemed to already be a foregone conclusion. In the end, making the trip to Michigan was simply our “Hail Mary”.

The End

The days that followed were a few of the most meaningful, gut-wrenchingly awful, and beautiful days that I’ve ever known. One main takeaway, as I reflect a week later, is that there’s no question as to whether Scarlett was ready to go. Once she was extubated Friday evening, her condition declined rapidly over her remaining 36 hours of life. We were fortunate to have the chance to spend a few incredibly meaningful hours with her as she was awake and alert that Friday night, and for a few hours on Saturday as well. We never told Scarlett why we stopped some of the meds, and we never told her that she was dying. But somehow… it was the most bizarre thing… it seemed like she already knew. It seemed as if she was communicating to us in various ways that she was comfortable and that everything was okay. I pondered at length as to whether to include the details of these moments, and further details surrounding her death. However, ultimately the fine details of her final days will stay with us in our memories and will not be printed here. There are some details that we do wish to share however. One thing that she was sure to do, was that she made certain to express to us that she loved us, and to express to other family and friends that she loved them. It was very deliberate on her part to communicate this to us. Saturday brought further decline to her condition. She was asleep most of the day and was only awake a few hours. Her breathing during her final two days was a constant struggle that worsened over time, as if she was pulling each breath from her chest. Her heart was racing, with tachycardia. When she slept, there were signs of apnea and missed breaths. Each brief moment where she missed a breath, I felt my own heart jump in my chest.

Before she fell asleep on Saturday night, Scarlett looked at me and raised her arms in the air. I assume she wanted a hug, but when I leaned in, to my surprise she pushed me away. With her typical dry delivery: “tickle me”. Jenn and I both laughed, and I could just see Scarlett smirk, even when there was none on her face. Scarlett fell fast asleep. I didn’t know it at the time, but these were the last words I’d hear her speak.

She took her last breath at 9:40 AM on Sunday morning, and was finally able to rest.

Losing her brought a pain and emptiness that I have never known. As awful as the end of this story is, we can take some comfort in knowing that it was truly her time to go, and that she is no longer suffering.

No matter what, Scarlett’s memory and spirit will always be with us. We hope to take comfort in knowing the impact that she had, not just with us, but with everyone she met. Everyone loved sweet Scarlett. She made a difference in the world. I hope that when I’m met with other challenges of my own in the future, that I can handle these challenges with even a fraction of the strength and bravery for which Scarlett handled the overwhelming responsibilities that life handed her.

We love you Scarlett. You are the sweetest, smartest, silliest, bravest, and most loving daughter that we could have ever asked for.