If there’s one thing I want you to know about Hallie, it’s that she never stopped fighting.
My daughter, Hallie James Kyed, died on Jan. 21 of acute myeloid leukemia. She was 2 years old — just two months shy of her third birthday.
One day before she passed away at Boston Children’s Hospital, Hallie gave us a gift. Her counts, which had been precipitously declining, improved. Her white blood cell counts had dropped. The percentage of leukemia blasts in her blood had fallen. Her electrolyte levels had settled. Hallie’s team of doctors – among the best in the world at what they do – couldn’t fully explain why it was happening, but they also didn’t want to give us false hope. We had already been told in the previous week and thereafter in no uncertain terms that Hallie was not going to make it. Doctors had given us the option to stop treatment multiple times. She relapsed after a bone marrow transplant, and her aggressive form of AML was not being slowed down by chemotherapy. It was too late by the time we started a trial treatment drug. Weeks ago, we had been told she had days to weeks to live, but we still clung to a sliver of hope since Hallie had overcome the odds before.
Her improved counts gave us some serenity. It encouraged us to get through the day and smile as we were surrounded by family. Hallie painted and spent time in the oncology floor playroom with her sister.
Hallie’s oxygen levels fell later that night, but she didn’t give up. Her levels improved as she insisted we push her around the halls of 6NE in the oncology wing of Boston Children’s Hospital where she always garnered compliments from nurses and clinical assistants in her princess dresses. She had a massive bag of them, and we’d pull them out one by one to ask which Disney dress she wanted to wear out of her assortment of Anna, Elsa, Cruella, Moana and much more. On this day, she had chosen to be Cinderella. But not her big blue Cinderella dress with the poofy skirt, not her Cinderella nightgown, nor her smaller, less elegant blue Cinderella dress. No, her pink Cinderella dress. Hallie always knew exactly what she wanted.
Her oxygen levels dropped again later in the night. Her platelet levels had been low and blood had entered her lungs despite numerous transfusions. Doctors and nurse practitioners prepared us for the worst and gave Hallie medicine to make her peaceful and comfortable. She suddenly had hours to live. Her breathing slowed to a stop early Sunday morning as my wife, Jen, and I laid in bed with her, holding her hands while our other daughter, her 6-year-old sister, Olivia, slept on a pull-out couch. We watched with the hopeless feeling that we could no longer help or advocate for her. Doctors can tell you for weeks and months that your child is going to die, but still, nothing can prepare you for the moment of still seeing them present but knowing they’re gone.
Hallie was more than a fighter. She was funny, beautiful, mischievous and brave. I would call her my little ragamuffin, my koala baby, a Sour Patch Kid – she’d start off sour by yelling at me and bossing me around and then give me a sweet kiss on the cheek or little pat on the back – my Hallie Bear. She would make silly, mad, cute and happy faces on command. When she made her “angry” face, her little nose would bunch up, she’d pound her fists and say “ANGRY” and then smile while we laughed at her acting display.
We take comfort in knowing that she was too young to process her diagnosis or even understand the concept of death. I’m better off, as is the world, having known her for nearly three years. She made a difference.
Hallie was diagnosed April 8, the day before Easter. A combination of a rash, swollen lymph nodes, a distended stomach and bruising sent us to her primary care physician for a second time that week. Jen and I Googled all of the symptoms simultaneously after discovering her bruises. Leukemia appeared on WebMD, and I consoled Jen in our kitchen as the girls played. “Cancer always appears as a worst-case scenario.” Her doctor sent us to Newton-Wellesley for tests. An abnormal result got Hallie admitted to Boston Children’s. Doctors told us worst-case scenario we would be there for six months. We stayed for 205 straight nights.
I had been laid off from my job as a national NFL reporter at PFF in December. After a couple of months of freelancing, I joined A to Z Sports in a management/reporting position in early March. One month later, Hallie was diagnosed, and suddenly I was writing news stories and conducting meetings from my new “office,” the bathroom of Room 6220. Fortunately, it was a corner room on the floor, and it was roomy, though meetings were commonly interrupted by doctor visits, Hallie’s cries for chips or juice and the incessant beeping of her IV. Jen took an extended leave of absence from her job to concentrate her attention on Hallie. She would stay at the hospital four nights a week while I took care of Olivia at home, and we swapped for the other three nights. My sleep was usually interrupted when my back could no longer handle the stiffest pull-out couch you could possibly imagine. We made the most out of hospital cafeteria vouchers. Subway will never taste the same again. And we cursed the long lines at the hospital’s Starbucks. Our moms watched Olivia during crossover days. There were just two nights that a grandma – not Jen nor I – stayed over at the hospital. Jen and I were two ships passing in the night as we came and went from the hospital. We had four dates – four concerts (Taylor Swift, Blink-182, Bruce Springsteen and The Wonder Years), three of which were planned before April – during the seven-month span. Hallie wasn’t the only champ through the experience. So was Olivia, who can roll with the punches better than most people six times her age and adjusted to being single-parented in a time that spanned the end of kindergarten, her entire summer vacation and the beginning of first grade. I snuck in a solo trip to Disney World with her to give her some normalcy during the summer.
We never could have guessed that Hallie would be gone so quickly during the early portions of her treatment. She impressed her doctors in all of her early labs. She responded to chemo well and never seemed to be negatively affected by any of her treatment. She was smiling and energetic and never even lost her hair until late June, when a stronger dose of chemo finally knocked most of it out.
Then her leukemia spread to her left eye. And just as she was getting set for her transplant, she had a relapse and had to undergo radiation, more chemotherapy and eye drops, which she absolutely hated. There were hurdles, but Hallie kept overcoming them.
Hallie loved walking the halls of the hospital. She’d walk on her own when she was feeling up for it as we chased her and navigated obstacles, dodging hospital equipment, spare beds, and nurses and doctors rounding in the halls, with an IV pole. When she wasn’t, she’d be pushed around in a little cart or stroller. After a whole day of walking, sometimes we’d argue with Hallie to try to sleep. She usually won those battles with a few more laps around the sixth floor. It was a lot more peaceful at night, especially in the far end of the floor, which we dubbed “the dungeon” because they turned off all of the lights when it got late. We’d see the same nurses and CAs all day and night on those walks, and they’d always greet Hallie with a smile and a compliment on her dress. Hallie sometimes would change nearly 20 times in a single day. And she’d grab her dress and twirl when a nurse would notice her outfit change.
A to Z was gracious enough to let me out of my contract when the Herald’s Andrew Callahan approached me about returning to the beat. I started at the Herald a week before training camp began, and covering the Patriots became a welcome but at-times difficult distraction.
The Patriots mostly scheduled practice on a day-to-day basis. I would leave the hospital the day before a practice, and Jen would understandably ask when I would be back. I didn’t know.
I love my job. So, if one of us was going to stop working, it made sense that it would be Jen. Between caring for Hallie at the hospital, Olivia at home and working, there was very little “spare” time. If I could find an hour or two, I’d usually go to the gym or get a haircut. So, in many ways, work was my respite.
I had covered the Patriots for NESN from 2013 to 2021 but left the beat for two seasons. The return couldn’t have come at a better time.
Nothing would ever make me forget what Hallie was going through, but the habituality of watching a summer’s worth of training camp practices, standing around in the Patriots’ locker room or attending a Bill Belichick press conference made things seem normal even if I was living through a nightmare. I could breathe a bit when we traveled to Green Bay for joint practices. Hallie liked the cheesehead I brought back. I would look forward to covering games even through a 4-13 season. It was nice to see familiar faces checking in on Hallie, me, and our family throughout the week.
In-season, my nights at the hospital were Friday night and Monday night. I had to be at the stadium or on the road on Wednesday, Thursday, Friday and Sunday. For road trips, I’d leave for the hospital on Friday afternoon, go to the airport on Saturday morning, return straight to the hospital from the airport on Monday and not get home until Tuesday evening. “No days off.”
I tried to write ahead during the week so I could devote my attention to Hallie in the hospital, but when I had breaking news, I had to jump on it. I’d tweet out breaking news from the playroom or the sixth-floor halls. I’d hunch over my laptop writing as fast as I could while Hallie would persistently try to get my attention from her crib. “Hold on, Hallie. One second, Hallie” did little to assuage her. She was a determined little girl. Hospital staff was always happy to watch Hallie when I could prepare for work in the hospital.
Hallie finally had her bone marrow transplant two days after the season began on Sept. 12. Doctors were hopeful about her plan. Typically, transplant patients return home four weeks after a transplant. Hallie finally came home on Oct. 30. I took the rest of the week of to celebrate but was back for Sunday’s game against the Commanders.
She was happy to be around her family and cat, but Jen and I then had to become nurses on top of co-parenting two children. Jen masterfully kept track of all of Hallie’s medicine. There were prescriptions to administer at 8 a.m., 2 p.m. and 8 p.m. I was diluting a chemotherapy pill in water to send through her NG tube and giving eyedrops. Eventually, we were giving her two shots a day to treat a blood clot. Hallie would immediately start clapping after the shot, knowing that Jen and I would be clapping and saying, “Good job, Hallie!” We were also both working, since Jen ended her leave after Hallie came home.
Hallie was immunocompromised but got to spend Halloween and Thanksgiving at home, though we were still taking multiple trips into Boston each week for labs or treatment at the Jimmy Fund Clinic. I built an outdoor tent and heat lamps to have Thanksgiving at home surrounded by family.
After Thanksgiving, biopsy results showed that she had relapsed.
I canceled my remaining work trips. Jen resigned from work. I wouldn’t be traveling to Pittsburgh, Denver or Buffalo to spend as much time with Hallie as humanly possible. The IV beeps and laps around the hospital returned when she had an extended stay at the hospital in December, treating her blood clot, but she was home, and happy, for Christmas. She was so happy for Christmas. It’s bittersweet to look back at pictures and videos from that day. We were so lucky to have a perfect Christmas with her, but how could that happy, smiling, dancing, excited little girl be gone less than a month later?
After the Patriots’ season ended, doctors told us that Hallie’s chemotherapy wasn’t working.
We tried to keep Hallie at home for as long as possible, but she was having trouble breathing, so we had to return to the hospital. After a week surrounded by her mom, sister, grandmothers, aunts, uncles, cousins and me, Hallie passed away on a Sunday morning. Her wake was the next Friday.
I haven’t fully processed everything that’s happened – not in the past month or 10 months. It’s all gone by too quickly. This time last year, we had a perfectly happy, shaggy-haired, smiling child getting ready for a trip to Disney World where she was timidly posing for pictures with princesses, pulling stuffed animals off of shelves and piling them in her arms and clapping and dancing on It’s A Small World.
Life will never be the same. Everything reminds you of what was lost, and sometimes it comes out of nowhere. It’s difficult to walk the aisles at Target and see her favorite toys or pass by a McDonald’s. We always had to get her a burger, chicken nuggets and fries. Hallie loved car rides. I’ve decided to keep one of her stuffed animals in the car so she’s always with us. I thought I’d have 16 more years before my girls were both off to college. Now that’s unfairly been shortened down to 12. I don’t take a single day with Olivia for granted. I try to make every day special in some way. There’s so much that Hallie never got to experience in life and so much that she had to go through that hopefully most people will never have to endure. I wanted to watch her take dance classes, take the bus home from school with Olivia, teach her to play softball and see her raise her own family.
We have been fortunate to have a lot of support over the past nine months from friends, family, co-workers and colleagues. I’ve tried to thank as many people as possible, but if you’ve helped or supported us, and I haven’t thanked you, then (this is for you:) Thank you. It was strange to see our story become news. Hallie’s death was picked up by national outlets, and the attention from those stories made responding to every positive message impossible. But we saw them, and it’s nice to know that Hallie made an impact on so many people who got to see her courageousness.
It is so, so appreciated. But I also never wanted to live a life being pitied.
I try to keep myself busy. Olivia’s positive spirit, enthusiasm and zest for life have helped more than she’ll ever know. Still, it doesn’t feel right to have this much free time. It feels too easy to care for one child. When we decide to go to a store, go out to eat or do an activity, a part of our family is missing.
Andrew has had a busy season filling in for me when I suddenly couldn’t cover a conference call because Hallie had been called down to the operating room to undergo anesthesia for a lumbar puncture, or when I had to leave work early on Fridays to drive to the hospital.
I’ve taken time to grieve, but I have been following all of the Patriots coaching updates through Twitter notifications. I probably won’t be back to 100% at work for a while. But I do enjoy writing about football and dissecting the minutiae of the Patriots’ team. I’m embracing as many distractions as possible. So, don’t feel bad when you see me tweeting a minor transaction or my byline in the Herald. That is what I want to be doing. Eventually, when I’m back at the NFL Scouting Combine, reporting on free agency, at the NFL Annual Meeting and covering OTAs, minicamp, training camp, preseason and the 2024 season, life will feel more normal again, even if it will never be the same.
For Hallie, Jen, Olivia and me, remember our story to appreciate what you have; whether it’s your health, your family, your children, your friends or anything.
And like Hallie, don’t take no for an answer so easily.