If there’s one factor I need you to learn about Hallie, it’s that she by no means stopped combating.
My daughter, Hallie James Kyed, died on Jan. 21 of acute myeloid leukemia. She was 2 years previous — simply two months shy of her third birthday.
One day earlier than she handed away at Boston Children’s Hospital, Hallie gave us a present. Her counts, which had been precipitously declining, improved. Her white blood cell counts had dropped. The proportion of leukemia blasts in her blood had fallen. Her electrolyte ranges had settled. Hallie’s workforce of docs – among the many finest on the planet at what they do – couldn’t absolutely clarify why it was occurring, however additionally they didn’t wish to give us false hope. We had already been instructed within the earlier week and thereafter in no unsure phrases that Hallie was not going to make it. Doctors had given us the choice to cease therapy a number of occasions. She relapsed after a bone marrow transplant, and her aggressive type of AML was not being slowed down by chemotherapy. It was too late by the point we began a trial therapy drug. Weeks in the past, we had been instructed she had days to weeks to dwell, however we nonetheless clung to a sliver of hope since Hallie had overcome the percentages earlier than.
Her improved counts gave us some serenity. It inspired us to get by way of the day and smile as we had been surrounded by household. Hallie painted and hung out within the oncology ground playroom along with her sister.
Hallie’s oxygen ranges fell later that night time, however she didn’t surrender. Her ranges improved as she insisted we push her across the halls of 6NE within the oncology wing of Boston Children’s Hospital the place she all the time garnered compliments from nurses and scientific assistants in her princess clothes. She had a large bag of them, and we’d pull them out one after the other to ask which Disney gown she wished to wear down of her assortment of Anna, Elsa, Cruella, Moana and far more. On today, she had chosen to be Cinderella. But not her massive blue Cinderella gown with the poofy skirt, not her Cinderella nightgown, nor her smaller, much less elegant blue Cinderella gown. No, her pink Cinderella gown. Hallie all the time knew precisely what she wished.
Her oxygen ranges dropped once more later within the night time. Her platelet ranges had been low and blood had entered her lungs regardless of quite a few transfusions. Doctors and nurse practitioners ready us for the worst and gave Hallie drugs to make her peaceable and cozy. She immediately had hours to dwell. Her respiration slowed to a cease early Sunday morning as my spouse, Jen, and I laid in mattress along with her, holding her fingers whereas our different daughter, her 6-year-old sister, Olivia, slept on a pull-out sofa. We watched with the hopeless feeling that we may not assist or advocate for her. Doctors can let you know for weeks and months that your baby goes to die, however nonetheless, nothing can put together you for the second of nonetheless seeing them current however realizing they’re gone.
Hallie was greater than a fighter. She was humorous, stunning, mischievous and courageous. I’d name her my little ragamuffin, my koala child, a Sour Patch Kid – she’d begin off bitter by yelling at me and bossing me round after which give me a candy kiss on the cheek or little pat on the again – my Hallie Bear. She would make foolish, mad, cute and comfortable faces on command. When she made her “angry” face, her little nostril would bunch up, she’d pound her fists and say “ANGRY” after which smile whereas we laughed at her appearing show.
We take consolation in realizing that she was too younger to course of her analysis and even perceive the idea of demise. I’m higher off, as is the world, having recognized her for almost three years. She made a distinction.
Hallie was recognized April 8, the day earlier than Easter. A mixture of a rash, swollen lymph nodes, a distended abdomen and bruising despatched us to her major care doctor for a second time that week. Jen and I Googled the entire signs concurrently after discovering her bruises. Leukemia appeared on WebMD, and I consoled Jen in our kitchen as the ladies performed. “Cancer always appears as a worst-case scenario.” Her physician despatched us to Newton-Wellesley for exams. An irregular end result bought Hallie admitted to Boston Children’s. Doctors instructed us worst-case situation we might be there for six months. We stayed for 205 straight nights.
I had been laid off from my job as a nationwide NFL reporter at PFF in December. After a few months of freelancing, I joined A to Z Sports in a administration/reporting place in early March. One month later, Hallie was recognized, and immediately I used to be writing information tales and conducting conferences from my new “office,” the lavatory of Room 6220. Fortunately, it was a nook room on the ground, and it was roomy, although conferences had been generally interrupted by physician visits, Hallie’s cries for chips or juice and the incessant beeping of her IV. Jen took an prolonged depart of absence from her job to pay attention her consideration on Hallie. She would keep on the hospital 4 nights per week whereas I took care of Olivia at residence, and we swapped for the opposite three nights. My sleep was often interrupted when my again may not deal with the stiffest pull-out sofa you may probably think about. We made essentially the most out of hospital cafeteria vouchers. Subway won’t ever style the identical once more. And we cursed the lengthy traces on the hospital’s Starbucks. Our mothers watched Olivia throughout crossover days. There had been simply two nights {that a} grandma – not Jen nor I – stayed over on the hospital. Jen and I had been two ships passing within the night time as we got here and went from the hospital. We had 4 dates – 4 live shows (Taylor Swift, Blink-182, Bruce Springsteen and The Wonder Years), three of which had been deliberate earlier than April – through the seven-month span. Hallie wasn’t the one champ by way of the expertise. So was Olivia, who can roll with the punches higher than most individuals six occasions her age and adjusted to being single-parented in a time that spanned the top of kindergarten, her whole summer season trip and the start of first grade. I snuck in a solo journey to Disney World along with her to provide her some normalcy through the summer season.
We by no means may have guessed that Hallie can be gone so rapidly through the early parts of her therapy. She impressed her docs in all of her early labs. She responded to chemo properly and by no means gave the impression to be negatively affected by any of her therapy. She was smiling and energetic and by no means even misplaced her hair till late June, when a stronger dose of chemo lastly knocked most of it out.
Then her leukemia unfold to her left eye. And simply as she was getting set for her transplant, she had a relapse and needed to endure radiation, extra chemotherapy and eye drops, which she completely hated. There had been hurdles, however Hallie stored overcoming them.
Hallie cherished strolling the halls of the hospital. She’d stroll on her personal when she was feeling up for it as we chased her and navigated obstacles, dodging hospital gear, spare beds, and nurses and docs rounding within the halls, with an IV pole. When she wasn’t, she’d be pushed round in slightly cart or stroller. After a complete day of strolling, generally we’d argue with Hallie to attempt to sleep. She often received these battles with a couple of extra laps across the sixth ground. It was much more peaceable at night time, particularly within the far finish of the ground, which we dubbed “the dungeon” as a result of they turned off the entire lights when it bought late. We’d see the identical nurses and CAs all day and night time on these walks, and so they’d all the time greet Hallie with a smile and a praise on her gown. Hallie generally would change almost 20 occasions in a single day. And she’d seize her gown and twirl when a nurse would discover her outfit change.
A to Z was gracious sufficient to let me out of my contract when the Herald’s Andrew Callahan approached me about returning to the beat. I began on the Herald per week earlier than coaching camp started, and protecting the Patriots turned a welcome however at-times troublesome distraction.
The Patriots largely scheduled follow on a day-to-day foundation. I would depart the hospital the day earlier than a follow, and Jen would understandably ask once I can be again. I didn’t know.
I like my job. So, if one in every of us was going to cease working, it made sense that it could be Jen. Between caring for Hallie on the hospital, Olivia at residence and dealing, there was little or no “spare” time. If I may discover an hour or two, I’d often go to the health club or get a haircut. So, in some ways, work was my respite.
I had coated the Patriots for NESN from 2013 to 2021 however left the beat for 2 seasons. The return couldn’t have come at a greater time.
Nothing would ever make me overlook what Hallie was going by way of, however the habituality of watching a summer season’s value of coaching camp practices, standing round within the Patriots’ locker room or attending a Bill Belichick press convention made issues appear regular even when I used to be dwelling by way of a nightmare. I may breathe a bit after we traveled to Green Bay for joint practices. Hallie appreciated the cheesehead I introduced again. I’d look ahead to protecting video games even by way of a 4-13 season. It was good to see acquainted faces checking in on Hallie, me, and our household all through the week.
In-season, my nights on the hospital had been Friday night time and Monday night time. I needed to be on the stadium or on the street on Wednesday, Thursday, Friday and Sunday. For street journeys, I’d depart for the hospital on Friday afternoon, go to the airport on Saturday morning, return straight to the hospital from the airport on Monday and never get residence till Tuesday night. “No days off.”
I attempted to jot down forward through the week so I may commit my consideration to Hallie within the hospital, however once I had breaking information, I needed to leap on it. I’d tweet out breaking information from the playroom or the sixth-floor halls. I’d hunch over my laptop computer writing as quick as I may whereas Hallie would persistently attempt to get my consideration from her crib. “Hold on, Hallie. One second, Hallie” did little to assuage her. She was a decided little lady. Hospital employees was all the time comfortable to observe Hallie once I may put together for work within the hospital.
Hallie lastly had her bone marrow transplant two days after the season started on Sept. 12. Doctors had been hopeful about her plan. Typically, transplant sufferers return residence 4 weeks after a transplant. Hallie lastly got here residence on Oct. 30. I took the remainder of the week of to have a good time however was again for Sunday’s recreation in opposition to the Commanders.
She was comfortable to be round her household and cat, however Jen and I then needed to grow to be nurses on prime of co-parenting two youngsters. Jen masterfully stored observe of all of Hallie’s drugs. There had been prescriptions to manage at 8 a.m., 2 p.m. and eight p.m. I used to be diluting a chemotherapy tablet in water to ship by way of her NG tube and giving eyedrops. Eventually, we had been giving her two pictures a day to deal with a blood clot. Hallie would instantly begin clapping after the shot, realizing that Jen and I’d be clapping and saying, “Good job, Hallie!” We had been additionally each working, since Jen ended her depart after Hallie got here residence.
Hallie was immunocompromised however bought to spend Halloween and Thanksgiving at residence, although we had been nonetheless taking a number of journeys into Boston every week for labs or therapy on the Jimmy Fund Clinic. I constructed an outside tent and warmth lamps to have Thanksgiving at residence surrounded by household.
After Thanksgiving, biopsy outcomes confirmed that she had relapsed.
I canceled my remaining work journeys. Jen resigned from work. I wouldn’t be touring to Pittsburgh, Denver or Buffalo to spend as a lot time with Hallie as humanly attainable. The IV beeps and laps across the hospital returned when she had an prolonged keep on the hospital in December, treating her blood clot, however she was residence, and comfortable, for Christmas. She was so comfortable for Christmas. It’s bittersweet to look again at photos and movies from that day. We had been so fortunate to have an ideal Christmas along with her, however how may that comfortable, smiling, dancing, excited little lady be gone lower than a month later?
After the Patriots’ season ended, docs instructed us that Hallie’s chemotherapy wasn’t working.
We tried to maintain Hallie at residence for so long as attainable, however she was having hassle respiration, so we needed to return to the hospital. After per week surrounded by her mother, sister, grandmothers, aunts, uncles, cousins and me, Hallie handed away on a Sunday morning. Her wake was the subsequent Friday.
I haven’t absolutely processed every little thing that’s occurred – not previously month or 10 months. It’s all passed by too rapidly. This time final yr, we had a superbly comfortable, shaggy-haired, smiling baby preparing for a visit to Disney World the place she was timidly posing for photos with princesses, pulling stuffed animals off of cabinets and piling them in her arms and clapping and dancing on It’s A Small World.
Life won’t ever be the identical. Everything reminds you of what was misplaced, and generally it comes out of nowhere. It’s troublesome to stroll the aisles at Target and see her favourite toys or go by a McDonald’s. We all the time needed to get her a burger, rooster nuggets and fries. Hallie cherished automobile rides. I’ve determined to maintain one in every of her stuffed animals within the automobile so she’s all the time with us. I assumed I’d have 16 extra years earlier than my ladies had been each off to school. Now that’s unfairly been shortened all the way down to 12. I don’t take a single day with Olivia without any consideration. I attempt to make on daily basis particular not directly. There’s a lot that Hallie by no means bought to expertise in life and a lot that she needed to undergo that hopefully most individuals won’t ever should endure. I wished to observe her take dance lessons, take the bus residence from college with Olivia, educate her to play softball and see her increase her circle of relatives.
We have been lucky to have quite a lot of assist over the previous 9 months from buddies, household, co-workers and colleagues. I’ve tried to thank as many individuals as attainable, however in the event you’ve helped or supported us, and I haven’t thanked you, then (that is for you:) Thank you. It was unusual to see our story grow to be information. Hallie’s demise was picked up by nationwide retailers, and the eye from these tales made responding to each optimistic message unimaginable. But we noticed them, and it’s good to know that Hallie made an influence on so many individuals who bought to see her courageousness.
It is so, so appreciated. But I additionally by no means wished to dwell a life being pitied.
I attempt to preserve myself busy. Olivia’s optimistic spirit, enthusiasm and zest for all times have helped greater than she’ll ever know. Still, it doesn’t really feel proper to have this a lot free time. It feels too simple to look after one baby. When we resolve to go to a retailer, exit to eat or do an exercise, part of our household is lacking.
Andrew has had a busy season filling in for me once I immediately couldn’t cowl a convention name as a result of Hallie had been referred to as all the way down to the working room to endure anesthesia for a lumbar puncture, or once I needed to depart work early on Fridays to drive to the hospital.
I’ve taken time to grieve, however I’ve been following the entire Patriots teaching updates by way of Twitter notifications. I in all probability received’t be again to 100% at work for some time. But I do get pleasure from writing about soccer and dissecting the trivia of the Patriots’ workforce. I’m embracing as many distractions as attainable. So, don’t really feel dangerous while you see me tweeting a minor transaction or my byline within the Herald. That is what I wish to be doing. Eventually, once I’m again on the NFL Scouting Combine, reporting on free company, on the NFL Annual Meeting and protecting OTAs, minicamp, coaching camp, preseason and the 2024 season, life will really feel extra regular once more, even when it’ll by no means be the identical.
For Hallie, Jen, Olivia and me, bear in mind our story to understand what you’ve gotten; whether or not it’s your well being, your loved ones, your youngsters, your folks or something.
And like Hallie, don’t take no for a solution so simply.
Source: www.bostonherald.com