1. family and parenting

April 2015
April 2015
The Community Counts
A monthly newsletter for Duke Pediatric Blood and Marrow Transplant patients, families and supporters
Rainbow of Heroes Walk
The volunteer-based
Family Support
Program is dedicated
to caring for, serving,
and lightening the
burden of the Duke
Pediatric Blood and
Marrow Transplant
Community through
a comprehensive
array of services
and resources.
Inside this issue:
New Kids on the Block
2
Super Steppers
2
Recognizing special
people
3
Director’s Corner
3
Volunteer “We Love
You” Week
4
PBMT Happenings
5
Winner’s Circle
6
Wish List
6
The first Saturday of each May marks a special time in the life of the Duke Pediatric
Blood and Marrow Transplant (PBMT) Program. Each year on this day, we gather as a community for the Rainbow of Heroes Walk. Patients, families, staff, volunteers, and supporters gather
at the Duke Center for Living track for a special celebration to honor and commemorate all of
the heroes of the Duke PBMT community. The Walk also serves as the primary fundraiser for
the Duke PBMT Family Support Program, which provides over 25 programs as well as financial
support for patients and caregivers to help lighten their burden during their time at Duke. This
year’s Walk is the 15th edition, so we are looking forward to celebrating this milestone in style!
The Walk has many facets that make it a uniquely special event, and this year’s Walk
will be a great mix of steady traditions and new features. This year, we have added an online
auction the week leading up to the Walk that we would encourage everyone to be involved in.
You can access the online Facebook auction by searching for:
Rainbow of Heroes Walk Online Auction.
nd
On May 2 , we will begin the day at 9AM with a festival of games, a rock wall, bounce
house, crafts, music, and various guests and activities to entertain everyone in attendance. We
will hold a Rainbow Raffle this year featuring baskets donated from local companies as well as
supporters and families of Duke PBMT. During this time, our Wall of Heroes begins to come
together. The Wall is a series of panels provided to PBMT patients and families to put up posters, pictures, signs, and other items to demonstrate the power and meaning of their journeys
through transplant. Each year, the Wall is a special place that attracts so many of those in attendance to be in awe of the amazing strength of the families we are honored to serve. For the last
few years, we have also been excited to have a bone marrow drive at the Walk, sponsored by the
Hendrick Marrow Program. We would encourage everyone planning to attend to bring friends
and family to sign up to be a part of the National Marrow Donor Registry, as many of the
patients in attendance at the Walk have benefitted by someone taking that important first step.
At 11AM, we gather all of the patients and siblings in attendance for our annual patient
and sibling photos on the hill next to the track. And then we begin the Walk. We walk together
as a community around the track for 13 laps, adding up to 5200 yards in honor of the number of
our inpatient unit in Duke Hospital. Each lap is dedicated to a different part of the PBMT community, with special music accompanying the laps. We then come together at the middle of the
track for a few presentations and then the culmination of the event—a giant balloon release, creating a rainbow colored skyline in honor of all our brave heroes. The balloons we will release
are biodegradable. Following the balloon release, a barbecue lunch is served to all participants
free of charge.
Fundraising for the Walk happens through our Walk teams, which are being formed
now to help raise money for this year’s Walk. Creating a team is simple! Come up with a team
name and then register the team on the Rainbow of Heroes Walk website
(www.rainbowofheroeswalk.org). From there, you can reach out to friends, family, neighbors,
and other contacts for contributions. Donations can be made through the Walk website via credit
card. Checks and monetary donations can be mailed or brought on the day of the event. In addition, we encourage teams to create t-shirts to wear to the Walk in honor of a patient or the work
that you did to help support our families.
We hope that you will plan on joining us for the Walk. This event truly is a special time
for the PBMT program and Family Support. Please make sure to visit the Walk website
(www.rainbowofheroeswalk.org) for additional information or to make an online donation. We
hope to see you on May 2nd!
Page 1
New Kids on the Block
“New Kids on the Block” features patients on the 5200 unit who were admitted for transplant during the month
of March. It is our way to honor them and help the other inpatient families get to know them.
Eli, age 4
Jacksonville, FL
Gavin, age 11
Chesapeake, VA
Ja’Na, age 15
Tar Heel, NC
Joseph, age 3
Mahomet, IL
Mansoor, age 3 months
Abu Dhabi, UAE
Maxwell, age 7 months
Durham, NC
Natalie, age 14
Raleigh, NC
Oliver, age 11 months
Mahomet, IL
Super Steppers
Natalie
Two new patients have walked their way
into the prestigious Super Steppers Club.
Patients are able to join the club by walking
or riding a minimum of 250 laps while on
5200. In addition to being featured in
Community Counts, we give the patient a
commemorative T-shirt with their picture on
it to mark their accomplishment. Throughout
their journey to being a Super Stepper,
patients receive prizes as incentives to keep
as a reward for their great efforts.
This month’s Super Stepper inductees are
Natalie who earned 66 feet by walking 330
laps and Nick who earned 88 feet by walking
440 laps. Aurelia also became a Century
Club member by earning 100 feet and walking 500+ laps. Congratulations to these three
and to all of our dedicated walkers.
Page 2
Nick
Recognizing special people
There are three important recognitions that happened in March that we wanted to highlight in this month’s Community Counts.
First off, March is designated as National Professional Social Work Month. We feel that we have the best social workers out there in
Marion Kalbacker and Christie Smith, who provide expert, caring support to families in Duke PBMT. They are both innovative and
creative in their work, and have walked side by side with so many of our families in both celebratory and challenging times. We
would also like to recognize their intern, Jeneva Russell, who has been with us for this school year and has been a great asset to our
program and families.
March is also Child Life Month, with a spotlight placed on the work that Child Life Specialists do to help make hospitalizations
and medical treatments easier on pediatric patients. Tracy Lamar, our inpatient CLS and Nicole Queathem, our outpatient CLS,
provide hands on care to patients helping educate them on what to expect during medical procedures as well as developing strategies
to help them cope with difficult parts of their journey through treatment.
Finally, March 30th was National Doctor’s Day. We think that we have the best doctors in the world in our program in Dr.
Joanne Kurtzberg, Dr. Paul Martin, Dr. Tim Driscoll, Dr. Kristin Page, Dr. Suhag Parikh, and Dr. Vinod Prasad. They provide innovative care each day while remembering that they are treating young patients defined by their individual uniqueness, not a disease.
We are thankful to work alongside all of these individuals and they all deserve to have the spotlight shown on them whenever possible. Thanks for all you do!
Nicole and Tracy, Child Life Specialists
Jeneva, Social Work intern with
Marion and Christie, Social Workers
Drs. Page, Driscoll, Martin, Prasad,
Kurtzberg, and Parikh
Director’s Corner
We are less than a month away from the 2015 Rainbow of Heroes Walk! I hope that you all are excited and
planning on joining us for this year’s Walk. If you have never been to a Walk before, it is truly a fun-filled day of
music, games, reunions and special moments. It is staggering to think that this is the 15 th year of the Rainbow of Heroes
Walk. With each year, it grows in size, but also in meaning. I know that I am personally impacted walking around the
track each year seeing all of the families of Duke PBMT together as we celebrate and remember all of our Heroes, the
patients of the Duke Pediatric Blood and Marrow Transplant Program. I hope that the article on the front page gave you
a good sense of everything that will be happening at this year’s Walk—there is a lot!!
I did want to take some space to thank some special people that make the Walk happen. The first is our
Rainbow of Heroes Walk committee. They have literally been working since our last Walk to prepare for this year’s
celebration. Not only do they give of their time, creativity, and talents, but they truly put their hearts into making sure
that each year’s Walk is the best that it can be. The committee is made up of Robyn Barber, Caroline Sweezy, Stacey
Wooten, Marion Kalbacker, Christie Smith, Tracy Lamar, Maureen Kester, Jayne Cash, Barbara Chance, Brian Leatherland, Jessica Burgess, and Molly Spragins. I can’t thank this committee enough for all that they have done to put the
Walk together and to give it so many special touches. Also, our Rainbow Raffle committee has been hard at work for
several months to reach out to businesses and groups for donations. Under the leadership of Robyn Barber, Amy Dwye
and Steve Petrycki have done a lot of great work to revise this part of the Walk into one that will not just be fun, but will
make a great impact on patients and their families through the results.
We are blessed to have so many former families, patients, and other caring individuals who have established
Walk teams to raise money for the Walk. As mentioned, the Walk is the chief fundraiser for the Duke PBMT Family
Support Program. Without all their work, we would not be able to provide the services and programs that are available
to our families to help get through the long transplant journey. If you would like to create a Walk team, there is still
plenty of time to do so on the Walk website at www.rainbowofheroeswalk.org, Any gift makes an impact, and our
website is able to receive credit card donations through our online secure portal. 15 years is an
incredible milestone, and I look forward to celebrating it with you all on May 2nd!
~Scott~
Page 3
Volunteer “We Love You” Week
We are extremely blessed to have volunteers willing to devote their time and loving hearts to support the
families of 5200. They make a tough day easier, a boring day fun and provide much needed respite for our
caregivers. They also provide love and comfort in the form of home cooked meals, haircuts on the unit and
chair massages. Thank you for the smiles, laughter and love.
Page 4
PBMT Happenings
Ja’Na and her mermaid
Syringe shooting in the playroom
Berkleigh’s birthday bike
Masks cannot hide smiles
Every day is princess day
Jaylin and Miss Fran
Blaize lost his cheeks
Gloves are not an obstacle
Ann & Mom at Hillandale
Building cup city
Destroying cup city
BINGO
Will and G3 rockin’ it
Leprechaun BINGO
See you sweet Deklan
Jayden and Mom
Page 5
Winner’s Circle
Wish List
We are grateful to all of the people who help support
PBMT families through contributing their time, energy,
and resources.
We would like to thank the following who made
monetary donations:
 Elizabeth and Joseph Brown
 The Creative Civitan Club
 Joseph and Kathleen Haller in memory of
Ronnie Wisseman
 Nicholas and Samantha Hamilton
 iGive.com
 North American Scrabble Player’s Association
 Pfizer in honor of Steve Kearney’s volunteer work with
Duke PBMT
 Valic
We would like to thank the following who made in-kind
donations:
 Susan Hays of The Original Cake Lady for donating a
Frozen themed Icing Smiles, Inc. cake for Berkleigh's
birthday
 The Kearney family for putting together discharge bags
 H.E.A.R.T.S. Club for hosting our outpatient Bingo
night at Hillandale Golf Course and donating pizza,
snacks, gift cards, and prizes
 The Ronald McDonald House of Durham for hosting our
outpatient Art Night with Ms. Liz
 David Spisak and friends for donating snacks and coffee
for our patients and caregivers
We would also like to thank the following groups for
providing Community Meals for families on 5200:
 Aldersgate United Methodist Church
 DTM Foundation
 Ephesus Baptist Church
 Hope Small Group
 Katie Swaney Foundation
 Macedonia/Salem Baptist Churches
 St. Luke’s Episcopal Church
If we have inadvertently left you off our
Winner’s Circle, we apologize and
please let us know!
Page 6
The following items would be greatly
appreciated to support our patients and
families as they experience transplant and/or
receive treatment:





Xbox video games
BP Gift Cards ($25 increments)
Walmart Gift Cards ($25 increments)
Target Gift Cards ($10 and $25 increments)
GameStop Gift Cards ($10 increments)
We also have a wish list at Amazon.com that includes a variety of toys, games and other helpful
supplies. www.tinyurl.com/PBMTFSPlist
Community Counts is a monthly newsletter
produced by the Duke Pediatric Blood and Marrow
Transplant Family Support Program, distributed
free to patients, their families, volunteers,
supporters, and staff.
Contributors:
Robyn Barber
Scott Mofield
Caroline Sweezy
Stacey Wooten
Duke PBMT Family Support Program
1400 Morreene Road
Durham, North Carolina 27705
Phone: (919) 668-1128
E-Mail: [email protected]
Follow us on Facebook!
www.facebook.com/DukePBMTFamilySupportProgram
If you’d prefer to receive this newsletter via
email, let us know!