Kidsfirst - Facing off against leukemia All she wants to do is dance A breath of fresh air - Northwell Health
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
kidsfirst
Volume 2, 2018
Facing off against
leukemia
PAGE 10
All she wants to
do is dance
PAGE 6
A breath of fresh air
PAGE 8
Contents Back to everyday life
3 Make
movie night
it a family Children’s resilience is our inspiration.
While spring blooms all around us,
4 Alldo isshedance
wants to children are looking forward to light-
hearted fun. Those who come to us for
care also look forward to better days with
6 Afresh
breath of
air
a sunny outlook — sometimes even in the
midst of serious illness.
Letting kids be kids is the focus at Cohen
8 Facing
leukemia
off against Children’s Medical Center. We account
for their changing needs while they grow
and develop, delivering top-flight care
12 Family
roundup
health app that’s sensitive to kids as individuals. That
helps children to thrive and loved ones to
breathe easy — literally.
For example, Adrianna had breathing
kids
problems since birth and her family found orthopedic surgeon who created it (see
answers here at Cohen Children’s. She had page 4). Hallie was up and out of bed
two health issues that were masquerading only four days after surgery. Within three
as one common ailment (see page 6). Now weeks, she was back to normal.
11, Adrianna and her family experience These happy outcomes typify Cohen
our ongoing support.
FIRST
Children’s high standards that earn
Perhaps you recognize John Higgins respect from U.S. News & World Report
(see page 8) from Cohen Children’s year after year. We continue to pursue
Superheroes campaign. Acute lymphocytic new standards of excellence for the sake
leukemia (ALL) struck while he was a of you and your family.
Michael Dowling
President and CEO, Northwell Health toddler. Treatment from our team of
pediatric hematologists/oncology and Charles Schleien, MD
Charles Schleien, MD
cellular therapy specialists put him back on Executive Director, Cohen Children’s Medical Center
Executive Director of Cohen Children’s
Medical Center, SVP, Executive Director &
his feet and being a kid again. Chair of Pediatrics, Northwell Health
Chair of Pediatric Services for Northwell Surgery was the only solution when severe Philip Lanzkowsky Professor of Pediatrics, Donald
Health, and Philip Lanzkowsky Professor of scoliosis took the pep out of Hallie’s step. and Barbara Zucker School of Medicine at Hofstra/
Pediatrics of the Zucker School of Medicine Northwell
This teen was a candidate for a minimally
at Hofstra/Northwell
invasive operation by the pediatric
Terry Lynam
SVP & Chief Public Relations Officer,
Northwell Health Public Relations
Our treatment is just the right size for kids.
Brian Mulligan
AVP, Northwell Health Public Relations
Follow
To find a pediatrician, call (833) GO-COHEN.
Maria Conforti us
Director, Editorial Services & Executive
Visit facebook.com/
Communications, Northwell Public Relations For information about making a
cohenchildrens to
Chris Gasiewski contribution to support Cohen
Manager, Editorial Services & Executive stay up-to-date on
Communications, Northwell Public Relations Children’s Medical Center, please
developments at
call (516) 321-6300 or visit bit.ly /
Cohen Children’s
strong4kids.
Medical Center.
2 kidsfirst I Volume 1, 2018
Make it a family movie night
At home…
Make a movie-themed menu.
Turn any movie into a fun
and healthy meal. Encourage
kids to help you brainstorm
and work together to plan
the menu. You can list new
names for each food based on
characters or details from the
movie. Watching Zootopia? Add
At the theater… “Carrots from Hopps’ Farm.” In
the mood for Inside Out? Try
Show Dogs – Out May 18 some of “Joy’s Green Grape
It’s time for Max, the tough police dog, to get fancy as he goes undercover Memories.”
at the world’s most exclusive dog show. Here’s a sample menu you can
enjoy while watching Moana.
Incredibles 2 – Out June 15
The Incredibles are back in action! While Elastigirl is out fighting crime, – Maui’s
Mr. Incredible is keeping their super kids out of trouble. Mighty
Mango
Teen Titans Go! To the Movies – Out July 27
Slices
The team of teenage superheroes tackle a villain’s plans for world
(use any
domination in their first feature film.
fruit)
– Green Veggie Seaweed (salad
or any green vegetable)
Community health and safety programs – Ono-Ono Island Punch
(seltzer with a splash of fruit
Cohen Children’s Medical Center strengthens communities with events juice)
for families with young ones.
– Hei Hei Chicken Kabobs
Impact Teen Driving (chicken and vegetables of
This free safe-driving curriculum is available at local high schools. Teens learn how to your choice)
stay focused behind the wheel by training in driving simulators donated by Kiwanis.
Supported by a three-year grant form Kiwanis International. Learn about bringing this
curriculum to your child’s school at (718) 470-7178.
Ready, Set, Shop and Grow
Children in Queens, Nassau and Western Suffolk elementary schools learn to identify
the five food groups, locate them in grocery stores and understand food labels. The
Kohl’s Cares Keeping Kids Healthy Program sponsors this free nutrition program,
which is available to schools, libraries and established community groups. Email
aschepers@northwell.edu for program availability.
Babysitting training
Youngsters from 11 to 16 years old can develop the skills they need to become
responsible babysitters in Kidwatcher classes. Cohen Children’s pediatric nurses
provide instruction on infant care, safety tips, handling emergencies, age-appropriate
toys and basic child development. Four-hour classes are available one Saturday
per month from 10am to 2pm. Visit bit.ly/kidwatcher-nhp to register for a class
at Cohen Children’s Medical Center in New Hyde Park. For the Pediatric Specialty
Care Center at Smithtown, visit bit.ly/kidwatcher-st. Learn more by emailing
CCMCCommunityoutreach@northwell.edu.
cohenchildrens.com 3
All she wants
to do is
dance
This Hempstead Hailie Martinez, 15, is a busy high
schooler. Besides her academic workload,
“She had a limited range of motion
and she was in horrible pain,” said
teen left severe she practices hip-hop dancing with friends
after school.
Angeliz Martinez, her father. “I knew
something was off.” He took her to the
scoliosis pain Yet her life was very different a year
emergency room.
behind and got ago. While getting ready for school one
morning, she experienced excruciating
An innovative solution
back to what back pain. Hailie was diagnosed with scoliosis,
a sideways curve in the spine that
“At first, I thought maybe it was my
she loved. backpack,” she recalled. “I always carry a often appears at the onset of puberty.
Sometimes a back brace can slow down
heavy one.”
the progression of scoliosis, but Hailie’s
But the pain continued. case was severe.
4 kidsfirst I Volume 1, 2018
“I got so scared, I hoped I could just wear a From scared to prepared
brace. But it kept hurting every day,” said
Hailie. “It turns out I couldn’t even wear Hailie prepared by learning as much as she
Watch their backs
a brace because my back was basically in could about her condition and procedure.
the shape of an ‘S’.” She and her father watched a video of Make sure kids get tested for
Surgery was the only answer. Hailie found
the surgery and he carefully reviewed the scoliosis at every physical,
procedure with her, step by step.
access to hard-to-find corrective surgery or sooner if they have back
when she met Vishal Sarwahi, MBBS. Dr. “She was scared, but she was glad she pain. Many elementary and
Sarwahi invented a minimally invasive knew what to expect,” said Mr. Martinez.
scoliosis surgery that is particularly “She was prepared, and she managed middle schools routinely
effective for teens, and he is the only to do an awesome job through the run the fast, easy forward-
surgeon in metro New York who performs whole thing.” bend test, so check with
the operation. He is chief of the Ross Hailie had a speedy recovery. “After
Center for Advanced Pediatric Orthopedics
your district. And Cohen
four days, she was getting up from her
and Minimally Invasive Spinal Surgery at hospital bed — it was very surprising,” Mr. Children’s orthopedic team is
Cohen Children’s Medical Center. Martinez said. Within three weeks after here when your kids need us,
“Standard scoliosis surgery requires a foot- surgery, Hailie felt like herself again. Now so visit bit.ly/ortho4kids to
long incision down the back, but our team the teen is back to dancing and enjoying
her everyday activities. make an appointment.
uses a minimally invasive technique that
only requires three small incisions,” Dr. As enthusiastic as she is, Hailie is being
Sarwahi said. “It preserves as much tissue mindful of her recovery. “I’m taking it slow
as possible.” — the doctor said I was cleared to play
He added that the surgery employs sports, but I want to be careful,” she said.
fewer disruptions to the tissue and very “I’m just so happy my back is good now!”
little cutting of bone. That results in “She’s my 15-year-old again,” said
significant benefits, such as reduced Mr. Martinez. “It’s the best thing that
blood loss, a much shorter hospital stay ever happened.”
and minimal scarring compared to the
standard approach.
How to help your child’s posture
Does your child spend too much time hunched over
their phone or tablet? Head, neck and back aches often
come from poor posture like keeping the chin dropped
to the chest for long periods of time.
To help prevent poor posture:
– Prohibit kids from using a laptop or mobile device
while lying in bed.
Cohen Children’s was recently
– Make time for physical activity. A sedentary ranked among the top facilities
lifestyle can make the aches worse. for pediatric orthopedic care,
– Encourage children to get in the habit of standing according to U.S. News & World
and sitting up straight. Report’s 2017-18 Best Children’s
Hospitals edition.
– Keep your own posture in mind, too. Modelling
healthy habits really drives your message home.
cohenchildrens.com 5
A breath of fresh air
If your child has a chronic illness that won’t resolve, keep
communication open with the pediatrician.
Wheezing is a common sign of asthma “She was 18 months old and had been Yet her mother persisted, and finally
in children, but sometimes symptoms congested literally since birth,” said brought Adrianna to meet Maria Santiago,
of one illness can be caused by another. Robin Linett, Adrianna’s mother. “We MD, chief of pediatric pulmonary medicine
When that happens, pediatric experts and couldn’t get her diagnosed properly — and the Cystic Fibrosis Center at Cohen
determined parents must work together the pediatrician kept looking for reactive Children’s Medical Center.
to solve the mystery. airway disease [asthma].”
As a baby, Adrianna Linett experienced
frequent congestion with recurrent cough
and ear infections. Misdiagnosis made her
“I walked out of the doctor’s office feeling a sense of relief.
discomfort even tougher. I thought, ‘At least we’re finding answers.’”
6 kidsfirst I Volume 1, 2018
How to cope when Her tests also revealed that Adrianna
carries a genetic mutation for cystic
your child has a fibrosis. The disease causes persistent Help your child breathe
lung infections, among other problems. easy. Visit bit.ly/clear-up to
chronic illness Carriers of the mutation usually don’t learn about our pediatric
Tips from the American show symptoms, but Adrianna’s case
Psychological Association is rare. She sometimes experiences pulmonology specialists or
Direct action is the best action.
troublesome mucus buildup. call (516) 321-8660 for an
Don’t deny the condition. Focus Ms. Linett remembered learning that appointment.
directly on your child’s situation several issues were at the root of
to ease anxiety and depression. Adrianna’s respiratory health problems. “I
walked out of the doctor’s office feeling
Acknowledge how you feel. “She is a model patient for a kid with a
a sense of relief,” she said. “I thought, ‘At
It’s normal to feel sad, guilty chronic illness because she’s so on top of
least we’re finding answers.’”
or angry when you learn your what she needs to do,” said Dr. Santiago.
child will live with illness.
Set aside time to manage
Life with chronic “The way that Dr. Santiago has been so
responsive and believed me has made a
stress and protect your respiratory infections huge difference,” said Ms. Linett.
emotional well-being.
Adrianna is now 11 and Dr. Santiago is Already Adrianna’s doctor for 10 years,
Find others like you. cautiously optimistic about her conditions.
Build a support network for Dr. Santiago will be part of her life for a
“We have treatments that loosen the long time to come, added Ms. Linett. “I
you and your child. Join support mucus, and she takes antibiotics for
groups with other parents told her, ‘I’m not getting care outside of
the sinus and bronchial infections,” she Cohen Children’s, I need you by my side.’
who are in situations like your explained. “It should get better as she
family’s and talk to a behavioral It’s so important for a child with a chronic
gets older, but it should be watched illness to have a relationship with the
health specialist as needed. carefully.” At Dr. Santiago’s suggestion, same doctor.”
an otolaryngologist (ear, nose and
throat specialist) and an immunologist
monitor Adrianna’s progress, and the
Dr. Santiago examined Adrianna’s multidisciplinary team consults with Dr.
respiratory structures with a nonsurgical, Santiago regarding any new treatments.
fiberoptic system called a bronchoscope. “Adrianna is really sweet and she’s done
Her assessment revealed that the cartilage well in school. If there’s a way we can
in Adrianna’s trachea was too soft — a make things easier, we do,” said Dr.
condition called tracheomalacia. This Santiago. This includes scheduling surgery
abnormal tissue in Adrianna’s airway to coincide with school breaks so Adrianna
collapses as she exhales, making it doesn’t miss class. “Her mom incorporates
hard to breathe. the treatments into her day-to-day life as
The condition can cause wheezing, so it’s much as possible.”
often misdiagnosed as asthma. But Dr. “It hasn’t stopped her. It hasn’t slowed
Santiago knew to look deeper and tested her down,” said Ms. Linett. In fact,
Adrianna’s blood and DNA. “Extensive her daughter sticks to a typical school
testing showed she has a deficiency in schedule and enjoys activities such as tap
mannose binding lectin protein,” she dance and summer camp. “Adrianna is
said. Not having enough of the protein really compliant with things,” her mother
affects her ability to fight infections of her said. “She takes four to five medications a U.S. News & World Report
sinuses and lungs. day, morning and evening to stay healthy.” recently ranked Cohen
Children’s Medical Center
among the top facilities for
pediatric pulmonology for
Watch Adrianna and her mom share 2017-18.
their story at bit.ly/adrianna-breathes
cohenchildrens.com 7
8 kidsfirst I Volume 1, 2018
Facing off
against leukemia
When childhood leukemia reappears,
treatment plans are at the ready.
John Higgins, seven, is an enthusiastic “We were glad about the success rate,
hockey fan and cancer survivor. His that the treatment plan was tried and
journey with Cohen Children’s Medical true,” Ms. Higgins said. John started Thinking about
Center began when he experienced a three and a half years of inpatient and
recurrent fever and ear infection at two outpatient chemotherapy, including a becoming a bone
years old. combination of different chemotherapies
and steroids, in 2012.
marrow donor? Here’s
Colleen Higgins, RN, John’s mother, took
him to a pediatric urgent care facility. The course of treatment finished what you should
“They couldn’t find a reason for his fever,” in January 2016, but John relapsed
Ms. Higgins recalled. “They did bloodwork that August.
know:
and found John had a low white blood cell “We were devastated,” his mother said. –– Becoming a donor gives a
count as well as a low hemoglobin and
fighting chance to patients
platelet count.”
Putting a new plan who do not have an eligible
As a nurse, Ms. Higgins understood the
severity of the situation: “When [it] into play donor within their family.
started to sink in, I was very concerned Remission came slowly when John –– Marrow donation is an
and upset.” resumed chemotherapy, so his care team
considered him at high risk. This made him outpatient procedure
She brought her toddler to a local hospital
emergency department right away. a candidate for a bone marrow transplant performed under anesthesia.
A pediatrician determined he needed as a potential cure. Donors typically return to
immediate ambulance transport to John was placed under the care of Joel work or school within one or
Cohen Children’s. Brochstein, MD, associate chief for
cellular therapy at Cohen Children’s,
two days.
Ms. Higgins still remembers the caring
EMTs in the ambulance. “They let him and preparation began for a bone –– Doctors request donors
watch Mickey Mouse Club House on their marrow transplant.
between 18 and 44 years old
iPad, so he wouldn’t be so scared.” In December 2016, John began a six-day
conditioning regimen to eliminate any
95 percent of the time.
At Cohen Children’s, Jonathan Fish,
MD, pediatric hematologist/oncologist, remaining leukemia cells and suppress his –– Visit bit.ly/match4life to
diagnosed John with acute lymphocytic immune system, so his system wouldn’t
reject the transplant, according to Dr. volunteer or learn about
leukemia (ALL). It was a daunting
diagnosis, but the medical center had a Brochstein. Two days after completing an donating bone marrow to
treatment plan for kids like John. intensive course of total-body radiation the National Marrow Donor
therapy and high-dose chemotherapy,
“Leukemia is the most common childhood
John received a transfusion of donated Program.
cancer,” says Dr. Fish. “But the treatment
bone marrow.
has a 90 percent success rate.”
cohenchildrens.com 9
Since no family member was a match, the
National Marrow Donor Program found a
donor for John.
“The donor’s marrow was harvested and
brought by courier to Cohen Children’s
the next day. John received the marrow
via transfusion. The stem cells he
received eventually took hold and started
producing normal blood cells,” said
Dr. Brochstein.
In mid-January 2017, John was back
to doing normal things. “The doctors
lifted his restrictions, like no raw fruit
or vegetables or eating in restaurants
because his immune system had been
weakened,” Ms. Higgins said. “He now
goes to school, to birthday parties and he’s
learning guitar.”
John now also stars as a superhero in
Cohen Children’s latest promotional Smiles for children battling cancer
campaign. Ads highlight his bravery, Violette Pelew, center, recently had a ball playing one of many games and activities
courage and determination, which inspire available in Nicky’s Nest. The revamped playroom is a gift to Cohen Children’s Medical
Cohen Children’s pediatric specialists to Center’s Pediatric Hematology/Oncology Unit from Josephine and Nicholas Pedone,
see cancer care differently. left and right. The cheerful, engaging space honors the memory of their son, Nicholas,
“He’s doing beautifully, he’s never who succumbed to neuroblastoma at 7 years old. The couple will continue to make a
looked back,” said Dr. Brochstein. “He’s difference in the lives of children with cancer through the Nicholas Pedone Foundation.
off all medication and has had no
complications.” Dr. Brochstein will monitor every two months for the next couple of 2017: “John was featured in an NHL
John’s progress with routine blood tests of years. game,” she said. “He went to meet the
Rangers and even dropped the ceremonial
Ms. Higgins is glad to see her son be able
puck at Hockey Fights Cancer Night at
to enjoy himself, and recalled a highlight
Madison Square Garden.”
Leukemia: An Overview
How it affects Warning signs:
the body: Many signs and
Since red blood symptoms likely have
cells carry oxygen another cause, but
throughout the can include recurrent
bloodstream, a infections, easy bruising
shortage can cause and bleeding, bone or
Where it starts: fatigue and dizziness. joint pain, abnormal
Leukemia begins in the A low white blood cell swelling, or extreme
bone marrow. It crowds count can result in fatigue and weakness.
out blood-making recurrent infections and Bring your child to the
marrow cells, resulting fever, and a shortage pediatrician to check for
in lower levels of red of platelets can mean something serious and, Cohen Children’s is among the top
blood cells, white blood frequent bruising and if necessary, testing. 20 pediatric hospitals for oncology
cells and platelets. bleeding. care, according to U.S. News & World
Visit bit.ly/all-kids-care or call (718) 470-3460 to connect with Cohen Report’s 2017-18 Best Children’s
Children’s Pediatric Leukemia and Lymphoma Program. Hospitals edition.
10 kidsfirst I Volume 1, 2018Family health
app roundup
Make the most of always-
present mobile devices
with apps that promote
healthy habits.
Awesome Eats KidsDoc Homer C-Fit Yoga Headspace
Kids learn healthy Developed by Craft a Easy yoga Instill healthy
eating habits pediatricians, customized instruction mental habits,
through colorful this app tracks reading plan to help kids giving your
games and your child’s for your child gain balance, child the power
characters. The doctor visits based on flexibility and to declutter,
app also includes and provides interests and strength. For pause and
nutritious, kid- advice for reading level. ages 4 and up. reflect on the
friendly recipes how to deal Price: Free Price: $2.99 present.
and tips on how with common Price: Free
to compost and symptoms
recycle. that can arise
Price: Free day or night.
Price: $1.99
cohenchildrens.com 11Northwell Health
Cohen Children’s Medical Center
269-01 76th Avenue
New Hyde Park, NY 11040
Northwell Health Hospitals: Affiliates:
– Cohen Children’s Medical Center – LIJ Valley Stream – Plainview Hospital – Boca Raton Regional Hospital
– Glen Cove Hospital – Mather Hospital – South Oaks Hospital – Crouse Hospital
– Huntington Hospital – North Shore University Hospital – Southside Hospital – Maimonides Medical Center
– Lenox Hill Hospital – Northern Westchester Hospital – Staten Island University Hospital – Nassau University Medical Center
– Long Island Jewish (LIJ) Forest Hills – Peconic Bay Medical Center – Syosset Hospital
– LIJ Medical Center – Phelps Hospital – Zucker Hillside Hospital
How does your garden grow?
Get some green in your life with a DIY herb garden.
Kids of all ages will enjoy creating their very own garden and watching it grow. Basil, oregano
and cilantro are easy to take care of and can make a fun and inexpensive project. Older kids
can take it a step further by using their herbs to make their own tasty, healthy meals — basil
is the star of simple pesto recipes, oregano adds flavor to veggie pizzas and cilantro makes for
some yummy tacos.
1. Remove the lid from the egg carton and
Egg carton herb garden trim the sides so it is even all around.
Ingredients: 2. Fill each cup with soil.
– 1 cardboard egg carton 3. Make an indentation in each egg cup and
– basil, oregano and/or cilantro seeds place a single seed in each hole, then cover
– potting soil each seed with soil.
– water
4. Gently water each egg cup until the soil
is wet. Place the carton on a windowsill or
patio where it will get lots of sunlight and
Sun is great for plants, but if you and be sure to water it every day.
your child are gardening outdoors, apply 5. Once the seeds have sprouted, you can
a broad-spectrum sunscreen with SPF 30 move them to an outdoor garden or into
a larger pot. But no need to remove them
or higher to all bare skin. Reapply every two hours or after
from the egg carton — when planted in
excessive sweating, as recommended by the American the soil, the egg carton will eventually
Academy of Dermatology. Find more helpful tips at decompose. Just moisten the carton and
you’ll be able to rip apart the individual egg
KohlsHealthyKidsNY.com.
cups for planting.You can also read
