By Irene Sege
Alisha, Michelle and John. Photo by Sam Ogden
Even in its most common form, childhood cancer is rare. Imagine then that the reason your 2-year-old daughter is vomiting and can’t hold her head straight is not a virus, as doctors originally suspected, but an incredibly rare brain tumor. This is precisely what John Savage and Michelle Long of Cork, Ireland, faced in November 2012, when their daughter Alisha Savage was diagnosed with Stage IV atypical teratoid rhabdoid tumors.
On Jan. 24, 2014, the family arrived in Boston to have Alisha treated at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “We researched a lot of hospitals in the U.S. We didn’t just jump on a plane. This is our best hope,” John Savage says. “We could be here three months. It could be three years.”
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Lucy's feeding time
For a 18-month-old girl, Lucy Schurman has very grownup tastes. It’s a cold, blustery December evening in Brookline, Mass., and the precocious toddler sits in a bright yellow child seat in a spacious, warmly lit kitchen, eating chunks of avocado.
“Chili is her favorite food,” her mother Jeana comments to Pam Lodish, who is tending to food on the stove. “But she’ll eat almost anything, kalamata olives or grapefruit. She even loves curry and handles spicier stuff better than her dad.”
As Lucy eats, a playful Bernese mountain dog saddles up beside her and the two enter a heated staring match, only broken up by Lucy’s dad, Mark, who leans in to feed her another piece of avocado.
The entire scene is enough to inspire a “home is where the heart is” greeting card, except the Schurmans’s house is 1,000 miles away. Though you’d never guess it from watching them interact, the Schurman and Lodish families have only know each other for a single year—one of the hardest years Jeana and Mark could ever imagine. Full story »
When Jennifer and Kevin Sheridan went for a routine 14-week ultrasound of their unborn son Owen, the only surprise the young couple expected was hearing if they were having a boy or a girl. But seconds after the first images of Owen registered on the grainy, black and white ultrasound screen, the Sheridans’ lives changed.
The pictures showed that the top of Owen’s head hadn’t normally closed during early development, creating a sizable opening. Without the skull to encase them, spinal fluid and brain matter seeped through the hole, ballooning and expanding under his skin. The resulting growth, called an encephalocele, threatened to kill Owen during, or shortly after birth.
“We went from thinking about what color to paint the nursery to praying we’d get a least a few minutes with him before he passed,” Kevin remembers. “It was devastating.”
In spite of the prognosis, the Sheridans went through the pregnancy normally. Over the next few months, Owen grew, as did his encephalocele. By 26 weeks, the mass was nearly as large as Owen himself. But despite the size of the growth, tests showed Owen was developing typically. In fact, he was far more active inside the womb than Owen’s older sister, Aubrey, had been a year earlier. And while Jennifer and Kevin didn’t know it then, those prenatal kicks and turns would be the first indications of Owen’s fighting spirit—a spirit that would eventually come to define him. Full story »
Motor vehicle injuries are one the leading causes of death among children in the United States. But many of these deaths could be prevented. Studies show that placing children in age- and size-appropriate car and booster seats can reduce serious and fatal car injuries by more than half. But remember, having the right car seat alone isn’t always enough—parents must make sure it has been installed correctly to fully protect the children who use them.
Steven and Charles Novak
When Justine Novak brought her 3-year-old son Steven to a local bike helmet fitting and safety seminar, she though it’d be a nice way to spend an afternoon and double-check her son’s helmet. She had no idea that information she learned there would eventually save his life, and the life of his 1-year-old brother Charles.
The safety seminar was put on by the Injury Prevention Program at Boston Children’s Hospital, at the request of one of Justine’s neighbors. That morning Barbara DiGirolamo, MEd, an injury prevention specialist with the program, went to Justine’s neighborhood to check the helmets of all children in attendance to make sure they were the appropriate size and shape, and that they fit correctly. She also looked them over to ensure each was still in good, working condition because even a single crash can damage a helmet to the point where it’s no longer useful. Studies show that a child with an old, damaged or poor-fitting helmet is nearly twice as likely to sustain a brain injury in a bicycle accident.
After all the helmets were tested and adjusted to fit perfectly, DiGirolamo set up a bike obstacle course for the children, then handed out safety pamphlets to parents and offered them safety tips on a number of topics. Knowing she’d soon be in the market for new car seats because both Steven and Charles were outgrowing theirs, Justine asked DiGirolamo if she had any recommendations. She suggested Justine buy the seats directly through the Injury Prevention Program, which sells top-of-the-line car seats at cost, and then have a Certified Child Passenger Safety Technician (CPST) install them right into the vehicle. (If you prefer to buy a seat from another vendor, or already own a seat and just want to make sure it’s installed correctly, our safety technicians will assist you, free of charge.) Full story »
Caroline Wigglesworth is a patient of Boston Children’s Hospital’s Heart Center. In the following blog she describes how growing up with a serious heart condition has influenced the young woman she’s grown to be.
Caroline (photo by Ned Jackson Photography)
“Do you think that I’ll grow up to be old?”
“Will people treat me differently because of my scar?”
It’s not often that a 9 year old asks you questions you can’t answer. But this boy, with his cute grin, Spiderman pajamas and wires running from his arms and chest to the life-sustaining machines at his bedside, was asking me things that I, and even his doctors, couldn’t answer for sure.
Even though I couldn’t answer his questions directly, I could talk with him openly, and in doing so, take away some of the urgency in his questioning. We sat together on the Cardiac Unit of Boston Children’s Hospital and talked about his life and mine. I shared stories of who I was, who I wanted to become and what I like to do. I fielded his questions as best I could, for I had those very same questions when I was his age going through a similar experience as a Boston Children’s patient back in the 1990s. Full story »
Kristen’s daughter Riley was born with a vascular anomaly called CLOVES Syndrome (Congenital, Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis/Skeletal/Spinal anomalies). Boston Children’s Hospital has done tremendous research on the condition, but due to its rareness Riley’s family often face unique challenges. In the following blog Kristen talks about the day-to-day trials and triumphs involved in raising a medically fragile child.
Becoming a parent is an act of love and faith that no amount of planning can ever really prepare you for. And once you begin raising your child, the changes you go through as a person are profound. Raising a child with a rare disease is even more life altering.
You experience all the love, hope and joy, but it’s mixed with almost constant anxiety, stress and strained financial budgets. It requires focus, discipline and intense endurance, but it’s also rewarding and empowering. That’s why I call it marathon parenting.
Marathon parenting can be hard to adjust to. (I always saw myself as more of a short-distance walker.) But sometimes life throws you into a race without giving you time to train; you just need to rise to the challenge. Full story »
Emily Ryan, a patient at Boston Children’s Hospital’s Heart Center, turned a life-long determination to succeed in the face of adversity into a powerful college application essay. The following words may be Emily’s, but the sentiment defines so many Boston Children’s patients and families that we asked Emily to share it with our readers.
As I pull through the gates of YMCA Camp Huckins for my eighth summer, this time as a counselor, I am handed a thick packet to guide me through the two busy months ahead. On the front cover is the quote: “There are so many people out there who will tell you that you can’t. What you’ve got to do is turn around and say ‘watch me.’ ”
As a cardiology patient at Boston Children’s Hospital, and the recipient of several heart surgeries as a young child, I find this quote particularly meaningful. An adventurous youngster, I first realized I was different during recess in kindergarten. Running with my friends, bouncing around the playground equipment, I leapt into the air to hang from the monkey bars. “Emily, too high,” a teacher’s voice yelled. “You know you can’t jump off of that; you have a heart condition.” And so I held back, containing the bubbly energy that made me want to run, skip and play like any other kid. Full story »
Happy Thanksgiving! We recently asked our patient families what they were most thankful for this year, and the responses we received were heartfelt and beautiful. However you spend this special week—celebrating Thanksgiving, Hanukkah or both—we hope you’re able to find a few moments of peace for yourself and your family, and together enjoy the things that you’re thankful for.
I’m thankful for the cardiac team that kept my baby healthy before and after her emergency Tetralogy of Fallot repair this month! Could not have asked for better caregivers for my baby girl!
This year, my family is thankful for a happy, inquisitive, sweet, quirky, loving, (but most importantly healthy) toddler! A year ago, we questioned what life would be like after his Hirschsprung’s Disease diagnosis and THANKS to Boston’s Children’s Hospital we get to share and enjoy life with our wonderful little boy! We can’t wait to see what his future holds!
I’m thankful that Boston Children’s Hospital helped me go from 400 pounds to 235 pounds and still losing! Without the weight loss, my son would have never been conceived.
We are thankful to be Boston Children’s Hospital parents, because they saved our son’s life. Boston Children’s was involved with his heart even before he was born, as he had a fetal intervention when I was 29 weeks pregnant. They handled the surgery and procedures after birth, and now he is a thriving little four-year-old boy.
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