Cure Family Newsletter

How We See It:

First Photovoice Study for Children with Cancer

Jonathan Black, a third year MD/MPH student at the University of Rochester School of Medicine & Dentistry recently piloted the first Photovoice Study for children with cancer. Photovoice, or participatory photography, is a method of learning about people's lives through their eyes, via photographs.
In this study, Black enrolled 10 to 15 children whose ages ranged from 8 to 17. The children received one-time use cameras to take photos of their choosing. After the children took the photos, they met in a group setting at CURE’s offices to view, discuss and write about their work.
In gathering this data, Black hopes to learn what life is really like through the eyes of a child living with cancer. He will use these photographs to demonstrate to the medical community and others the challenges, needs and difficulties facing children with cancer every day. Finally, Black hopes to use the content of the photographs to transform the medical care children with cancer receive into the most comprehensive program best suited to their specific needs.
If successful, he plans to expand Photovoice studies to include other children with cancer, children with chronic diseases and anyone else who may benefit from taking photos and showing a unique perspective to the medical community and beyond.
Black started taking photographs at the age of 15 and continued his interest while enrolled in Film and Media Studies at the University of Rochester. Upon his arrival at medical school at the University of Rochester, he sought to find a way to incorporate photography into his studies, leading to the development of this project. For further information about this study feel free to contact jonathan_black@urmc.rochester.edu.

Supplemental Tutoring Program Available for Patients

A new program was launched this spring designed to meet the needs of pediatric cancer patients who miss a lot of school because of their illness. Despite tutoring through their school district, these students feel they need a “boost” to stay current with their classes.
BOOST is the brain child of Linda Bolan, a retired teacher from the Phelps-Clifton Springs School District. She is the grandmother of one of our patients, Willem Bolan, who sadly, passed away last year. Bolan wanted to volunteer her time for patients and knew that students were not always getting sufficient instruction while on treatment. She worked with our Educational Liaison, Kathryn Wissler and developed a program to help meet the needs of these patients.
Bolan recruited a number of retired teachers with experience in all areas from the elementary to high school levels willing to volunteer their time to meet with patients. They will work with patients who are on therapy or off therapy for a year but who still feel the need to catch up on school work, or concepts that need strengthening. Instruction will be supplemental and is not meant to take the place of tutoring secured through the school district. BOOST is available during the school year and also over the summer, when many schools do not provide instruction. Teachers will meet with students at their homes or in the hospital.
Bolan will provide an evaluation of a child's needs and connect them with a retired teacher. Goals and materials will be discussed with a child’s classroom teacher and school tutor so BOOST can concentrate on areas of need. Teachers will have a letter of recommendation from their most recent employer to ensure that their credentials have been established. The program is open to students who live in Eastern Monroe County, Ontario County, Wayne County or Seneca County only.
We are excited about this pilot project and hope to help patients keep up with grade level skills during the transition back to school after cancer treatment. Those interested should contact Linda Bolan at (315) 462-9072 or Kathryn Wissler at (585) 275-1287.

Seabreeze Family Fun Days
Saturday or Sunday | August 2 or 3, 2008
Tickets can be used either
day and are available through CURE
$13.50 each | Children 2 and under free

Volunteer Caretakers Needed

FOR CURE’S GARDEN

The Julie Roberts Children’s Memorial Garden is in full bloom!
Our dedicated garden volunteers are hard at work, but could
use your help. If interested, please contact CURE at (585) 473-0180
or mary.gallis@curekidscancer.com. We can’t wait to hear from you!

Buy 2008 Xerox Classic Tickets And Support CURE

Purchasing 2008 Xerox Classic Tickets through CURE will continue to support our programs and families because CURE receives 100% of the proceeds. Presented by Monroe County Sports Commission and visitrochester.com and in conjunction with ESL Federal Credit Union, the Xerox Classic promises to be as exciting as ever. Held on August 11-17 at Irondequoit Country Club. The Nationwide Tour offers the opportunity to see some of the best golfers in the world compete. The Xerox Classic is one of the many favorites of this 32 week tour where the top 25 players earn their PGA Tour Card. To purchase tickets contact the CURE offices at 585-473-0180 or visit our website at CUREkidscancer.com and click on Xerox Classic.

Celebrating Life

at National Cancer Survivor’s Day

Despite scorching sun and 90 degree June heat, more than 300 families, volunteers and entertainers celebrated life at CURE’s 5th annual National Cancer Survivors Day at Genesee Valley Park.
“We had record attendance and a record number of donations. From food to entertainment, everything is donated for our kids and families to enjoy. It’s a day of fun and celebration at no cost to our guests. Without the generosity of our sponsors and volunteers, this event would not be possible,” said Brian Wirth, Executive Director here at CURE.
Sincere thanks to our sponsors including: Penguin Life Safety Corporation, Wegmans, Rowe Photo, Video & Audio, Fun Services Amusements, Great Lakes Custom Products, Monroe County Parks, Grease Paint Alley Clowns, The Magic Guy Chris Wilkinson, Rochester Disc Golf, Lollypop Farm, Spatola Party Rental, Lakeside Builders and Developers Inc., Aristo Development Inc., Fusilli family, DJ Dan Bookhart, Sound by Jim Archibald.

FOCUS ON

By JoAnn A. Belle-Isle, PNP

Dressed in her soft, cozy plaid flannel pants, SARAH MABON arrives in clinic twice a week. We often see “Sarah messages” on the white board listing the nursing assignments – each one is a special surprise. Sarah was diagnosed with Acute Lymphoblastic Leukemia in September 2007. She is in 7th grade at Newark Middle School. Her diagnosis of ALL at the start of the school year made it impossible to attend school regularly. She works with her home tutor, Nicole, and has been able to keep pace with her peers. Although she does not get a report card, Sarah is achieving a 90 average in academic work. Sarah attends school three days each week in addition to working with her tutor. She likes math and science and especially enjoys science labs.
As we chat in the playroom, Sarah is often working on one of her many art projects. Each time Sarah comes to clinic for her twice per week injections, she must wait an hour after the medication is given. She is usually in the playroom during her waiting time making one of her marvelous artistic creations. In addition to her art work, Sarah is a gymnast and a cheerleader and has been doing gymnastics since she was 6. Her favorite aspects of gymnastics are floor exercises, flips and handsprings. In 6th grade, Sarah became interested in cheerleading and was a back spotter for the team.
Sarah has experienced many significant medical difficulties since her diagnosis. She said the most difficult problems are associated with the side effects from her treatments. After a brief pause, Sarah said, “This has made me stronger, too. Mentally, I’m stronger.”
At present, Sarah is reading a book she is enjoying: TWILIGHT by Stephanie Meyer. It is a romance novel about a teen that falls in love with a vampire. Sarah also finds enjoyment in the company of her two mini daschunds Nikki, 1 and Penny, 4. Sarah explained that, “Nikki is nice and cute and Penny…well, she’s snappy.” Sarah has two half brothers, Steve and Joe, who are both married, with four children between them, who love their “Aunt Sarah.”
Anyone who has taken steroids knows the topic of food comes up often and it was certainly part of our conversation. While we talked, Sarah was munching on a dish of macaroni and cheese and told me she pretty much loves all types of pasta. She also enjoys steak (medium rare), cooked on the grill or broiled. For dessert, Sarah likes brownie swirl ice cream. There were only two foods that Sarah would avoid: spinach and octopus.
Three cheers for Sarah! Down with side effects and octopus and up with physical therapy and gymnastics. Like the Olympic gymnasts, Sarah knows it takes a lot of practice, patience and energy to achieve personal goals and we give her a GOLD MEDAL for her efforts.

Our Sincere Sympathies

CURE Childhood Cancer Association extends its deepest sympathy to the families of these very special individuals

Jonathan Sheldon 2/1/08
Heather Allen 2/25/08
Hector Mendoza 4/3/08
Mira Brouwer 4/26/08
Scott Toombs 4/29/08
Courtney Saunders 5/4/08
John Delgado Colon 5/18/08
Tyler Wilkins 5/25/08

Fran Kreider's 10 Reasons to Smile

It was October of 1999. My husband and I were out for an evening--a first since our son's diagnosis of rhabdomyosarcoma two months before. Neighbors told us they would stay with our children while we had some time together.
Our choice for this date? Shopping for a video camera. As we were enjoying time together, talking and laughing, I noticed some acquaintances watching us. They were aware of our son's illness. Instantly, I felt guilty for having fun. After all, my baby had cancer. Shouldn't I be more sober and reserved? Maybe weep quietly?
While I have shed plenty of tears, I have found much that brings joy and laughter in the midst of the struggles and pain. I now offer to you 10 of my reasons to smile even though your child has cancer.

Number 10: Kiddie TV programs. If you have preschoolers, little kids' programming can be a life saver. If your children are older, you can grin since you do not have to watch it with them any more!
Number 9: Email. The retelling of details can be difficult, but loved ones want and need the information. What an amazing thing to push a few buttons and let all those on your list feel connected. It is such a relief only writing or communicating updates about your child once.
Number 8: Medical personnel. Doctors, nurses, technicians and child life specialists can make us smile with relief when they give us good news or encouragement. They become our co-workers, genuinely interested in our child's well-being. Also, knowing that delivering bad news causes them pain too may help parents battle the feelings of isolation.
Number 7: New friends. The other parents we meet offer much more than friendship. There is a camaraderie that is different from the friendships of our pre-cancer days. No one else understands tubies and CBCs and tosses around terminology like they do. Most others cannot offer the same level of empathy.
Number 6: Old friends. The people we have known for years are such gifts. They may not truly understand what a childhood cancer diagnosis is like, but they know and love you. They are the ones who may clean your house and bring you meals. They may take your other children on outings to help them feel special. They allow you to cry and laugh and be yourself.
Number 5: Family. Our immediate families and extended families are treasures. Spouses and children give us hugs and distract us from some of the stresses of cancer. Siblings keep young patients engaged and happy and "normal". Your child's grandparents have the privilege of shamelessly spoiling your child and doing things for him you may not have the energy to do.
Number 4: Faith. Your belief system may take a hit with your child's diagnosis, but hold onto what you know is true and take comfort from the like-minded. Find joy in what you believe.
Number 3: Memories. They are a treasure-store of wonderful things to pull out and lovingly recall. Remember events from your own childhood, of first getting to know your spouse, of your beautiful babies. Laugh over the funny memories of your child. Children are so charming and funny and provide laughter for a lifetime. Tell your child stories from both your lives, so he or she can enjoy the fun.
Number 2: Kisses. Giving your child kisses, even a big teenager, can make you smile. Kissing babies and toddlers will melt your heart and receiving affection from them is even better. This advice is for both Moms and Dads. Nobody should miss out on the joy of family.
Number 1: Smiles! The most important reason to let your face light up, even though your child has cancer, is for your child to see your smile. Whether the smile is for the child or for others, it will help a child to know you are relaxed and confident. Your child needs to see your smile. In the rocky road of cancer a child needs all the sense of security possible. Watch funny movies, tell jokes, relate stories. Enjoy your child!

A wise man once said, “a merry heart is good medicine.” Look for the little miracles every day, treasure your memories, enjoy time with your child and let your smile shine!

Congratulations!

Our best wishes to Jason McGraw on his graduation from MCC this spring. Jason majored in Psychology and hopes to find a job working with children. We congratulate him on his success!
KAITLYN LANE:
Scouting for CURE
Hi! My name is Kaitlyn Lane, I am a freshman at Greece Athena high school, and a Senior Girl Scout of the Genesee Valley service unit. I have been a Girl Scout for 9 years now and love every moment of it! For this reason, I plan on finishing all 12 years. Being a Girl Scout has always been important to me and has opened up my eyes to the world in so many ways. Throughout the years I have accomplished many different things. For example, in my 3 years being a Junior Girl Scout I completed and received the Bronze Award.
During the last 3 years as a Cadette, my troop and I worked towards earning the Silver Award by completing a project including 40 hours of work time. My internet research for organizations near me who needed help led me to CURE Childhood Cancer Association's website. I read about their need for personal care items to give families enduring long hospital stays. For my project I made 73 hand-sewn, drawstring bags, filled with personal care/hygiene items such as; shampoo, soap, toothbrushes, etc. These items were generously donated from people in my neighborhood, my family, friends and other Girl Scout troops. I also went around to local dentists who donated many complimentary toothbrushes and toothpastes. After filling the fabric bags, I delivered them to the wonderful ladies at the CURE office.
By completing this project and fulfilling all the requirements, I received the Silver Award on April 21st. I really enjoyed doing this for CURE because I believe it is a great organization and I wish it great success in the future.
Now that I have earned the Silver award and become a Senior Girl Scout, I plan on working towards the most prestigious of awards, the Gold Award. I will need another project to do. If anyone would like to share an idea of a project with me, please contact the CURE office to leave me a message. I will get back to you as soon as possible and would love to branch out and help more people in the world, so please share!

Isabella Roth Wins
T-shirt Design Contest

Five-year-old Isabella Roth was the winner of this year’s Cancer Survivors Day T-shirt Design Contest. Her design captured the essence of CURE by showing a group of five people holding hands with the words “Caring For Our Families” underneath. Everyone who attended Survivors Day received
a shirt with Isabella’s design.

Sammie’s Tops
“Sammie's Tops” were created by the
grandmother of a pediatric cancer patient. She was looking for a solution to the problem of the skin irritation (and tears) created by the persistent removal of tape used to keep a Hickman catheter in place. After some careful thought, and some trial and error, she devised a shirt that will hold up the dangling tubes. The apparatus can accommodate either a single tube or a double tube.

If you think a Sammie’s Top would be helpful for your child, you can get more information on their website at www.sammiestops.com
or call (920) 458-6907

One Parent’s Thoughts on Surviving
a Diagnosis of Childhood Cancer

by Sherry Saunders

I hear the questions or statements over and over again. “I don’t know how you guys do this!” “How do you have the strength to do all of this?” We are no stronger than any other parent. As parents, we all have an internal instinct to protect our children, to do whatever necessary to keep them healthy and provide a safe environment for them to thrive in. There is no choice to “do this or not,” we have to do it! We get one chance to make sure the right decisions are made, the proper treatment is given and enough time is allowed for quality of life for our child.

What good are any of the treatments if the child never enjoys life? Some of the decisions we make as cancer parents are not the ones others may choose. We make life and death decisions for our child when we have never done this before. There is no book, set of rules or standards to follow. We do our best for our child, just as all of you would do for yours. We do this because we have no choice, we have to do this.
When your child is diagnosed with cancer all of a sudden EVERYTHING in life changes. Attitude towards daily tasks change. Outlook on life changes. Friends change. A job becomes less important. Family unit becomes the only thing that matters… keeping the family together, close, making sure everyone feels they are loved and trying to keep the child with cancer alive. There will need to be discussions with the other child or children about life, death, religion, God, friends and the possible loss of their best friend and sibling.

We cannot “pretend” everything is going to be all right. Our lives will never be “normal.” For us, this IS “normal.” It is a constant battle and an emotional roller coaster. There will always be the sick feeling when we hear “my stomach hurts, my leg hurts or I don’t feel good.” This is the life of a cancer family. Yes, cancer affects the entire family, we all have it, it is a family disease, which we will all deal with for the rest of our lives.

The only way to get through all of this is to:

Have good supportive, loving friends and family.
As a good friend of mine said to me a long time ago, “take one day at a time.”
To let God do all of your worrying, place all of this in his hands, it is there anyway we just need to let go.
Live each day as if it is your last—have fun! Enjoy life!
Give back (pay it forward) whatever you want to call it…Just Do It!
Most of all PRAY…for guidance, love and healing of body and soul!

Sherry’s daughter, Courtney, lost her battle to cancer in May, 2008. She was six-years-old.

Two State Senators Secure Funding for CURE

We are very grateful to Senator Joseph Robach and Senator Jim Alesi for securing much needed funding for us this year.
Senator Robach was instrumental in helping us to obtain a $25,000 grant to be used for repairs on our building. This generous funding will make it possible for us to repair our roof, add insulation to the attic and replace the windows throughout the building. In addition, we will replace the carpet and make other improvements to make our space more efficient. Many of these repairs and additions will help CURE be a little “greener” by using less electric and saving on energy costs.
Senator Alesi worked extremely hard on our behalf to secure a grant in the amount of $25,000 to be used specifically to ensure our success in continuing to provide all our families with the many programs and essential services we offer.
Please take a few moments to write both Senators Alesi and Robach to thank them for helping CURE.

Joseph E. Robach, Senator 56th District
2300 West Ridge Road
Rochester, NY, 14626

James S. Alesi, Senator, 55th District
220 Packetts Landing
Fairport, NY 14450

Surviving Childhood Cancer

Now What?

On April 12, 2008, CURE Childhood Cancer Association and Golisano Children’s Hospital at Strong of the University of Rochester Medical Center (URMC) jointly hosted a symposium entitled “Surviving Childhood Cancer: Now What?” Held at the University of Rochester School of Medicine and Dentistry, survivors of childhood cancer, their families, primary care and sub-specialist physicians, educators, nurses, social workers, and other health care specialists from around the upstate region came together for this special event. Featured were a faculty of national experts, some from upstate, a panel discussion by childhood cancer survivors, and an array of small-group sessions, each dealing with a different aspect of the survivor-related experience.
Opening remarks by Brian Wirth of CURE and Drs. Nina Schor and Craig Mullen of Golisano Children’s Hospital at Strong of URMC, set the stage for celebrating the successes that make survivorship a reality and facing the challenges survivorship presents, not just for patients, but for their families, friends, health care teams, employers, and insurers. Dr. Stephen Sallan, internationally renowned pediatric oncologist from the Dana Farber Cancer Institute in Boston, gave the keynote lecture entitled, “Yesterday, Today, and Tomorrow”. He underscored the need to take the late effects of therapy for cancer in the context of the primary agendas of cancer eradication and prolongation of life. Dr. Sallan demonstrated the power of molecular medicine in individualizing therapy to minimize toxicity while maintaining or enhancing efficacy. Drs. Louis Constine (Pediatric Radiation Oncology), Barbara Asselin (Pediatric Hematology-Oncology), and Randy Rosier (Orthopedics) of the URMC discussed late effects of radiation therapy, chemotherapy and surgery. They fielded questions and comments from the audience in a panel discussion and made it critically clear that survivors of childhood cancer, including those cured of their primary disease, be followed long-term in multidisciplinary clinics with specific expertise in late effects of cancer therapy during childhood.
In a panel discussion both poignant and informative, Bethany Marsh, Matt Murray and Dr. Jacob Adams, all survivors of childhood cancer fielded questions from moderator Kathryn Gallant and the audience. Gallant is also a survivor of childhood cancer.
Dr. Kevin Oeffinger, Director of the program for adult survivors of childhood cancer at New York’s Memorial Sloan-Kettering Cancer Center delivered a lecture entitled, “Lifestyle Issues of the Older Survivor”. Dr. Oeffinger made eminently clear the challenges for the adult survivor of childhood cancer extending far beyond the medical and physical effects of therapy. Issues related to post-traumatic stress, job, family, and insurance compound the physical effects of cancer and therapy.
Attendees then divided into break-out groups led by Wendy Hobbie, CPNP, MSN, Coordinator of the Cancer Survivor Program at Children’s Hospital of Philadelphia; Drs. Constine and Andrea Hinkle (Hematology-Oncology/Critical Care Medicine) from URMC; Dr. Heather Adams (Neurology) from URMC; Dr. Oeffinger; Dr. Andrew Vaughn and Randy Lincoln. These sessions allowed for vigorous and individualized discussion and addressed such issues as emotional and psychological issues, medical complications, employment and legal issues, and educational issues of survivors of childhood cancer.
Nina F. Schor, M.D., Ph.D.
William H. Eilinger Professor and Chair
Department of Pediatrics;
Professor
Departments of Neurology and Neurobiology & Anatomy;
Pediatrician-in-Chief
Golisano Children’s Hospital at Strong
University of Rochester Medical Center

September is Childhood Cancer Awareness Month
Join us for these activities:
Morton Fun Day
Saturday, 1 p.m., September 27 in Morton, NY
An afternoon of family fun including lunch, apple & pumpkin picking, wagon rides, crafts, games &
petting zoo.
Free for CURE families. Reservation required

Remembrance Service

Sunday, September 28
2 pm at CURE
A celebration of the lives of children we have lost.
Reservations requested.

Calendar of Events

JULY

7/14 Coping With Cancer and All That Comes With It
Parent support meeting – 6:30-8 pm at CURE
Child care available with reservation
7/23 Bereavement Group – 7-8:30 pm at CURE

AUGUST

8/2-8/3 CURE Family Fun Days at Seabreeze
$13.50 per person – 2 and under FREE
Tickets available at CURE
8/2-8/3 CURE at the Park Ave Festival –
Vespa Raffle and drawing at Parkleigh Pharmacy
(Visit the CURE web site to buy Vespa raffle tickets)
8/11-8/17 Tickets Fore Charity – Xerox Classic
Plan on attending the Nationwide Tour Golf Tournament at Irondequoit Country Club? Buy your tickets through CURE and100% of the proceeds go to support our families and programs. For more information call 473-0180.
8/11 Coping With Cancer and All That Comes With It Parent support meeting – 6:30-8 pm at CURE. Child care available with reservation.
8/17 Brae Burn Women’s Golf Tournament
For more information, contact the CURE office.
8/24 CURE Childhood Cancer 2008 Poker Run
Sponsored by Our Charity Events
The Rush Creekside Inn (parking lot)
6071 East Henrietta Rd, Rush, NY
Registration 10 am - Noon
$15.00 per bike or car, $5.00 per passenger
Music By: Flint Creek & The Riverside Drive Band,
50/50 Raffles, Door Prizes, and more
Visit www.ourcharityevents.com for more information
8/27 Bereavement Group – 7-8:30 pm at CURE

SEPTEMBER

9/8 Coping With Cancer and All That Comes With It
Parent support meeting - 6:30-8 pm at CURE
Child care available with reservation.
9/14 Casa Larga’s Race for the Grapes –
Benefit for CURE
2287 Turk Hill Road, Fairport, NY 14450
Registration - 8:00 am | Race - 9:00 am
Visit www.casalarga.com for additional information
9/24 Bereavement Group – 7-8:30 pm at CURE
9/27 Morton Fun Day– 1 pm Reservations required.
9/28 Remembrance Service, 2 pm at CURE
Reservations requested.

OCTOBER

10/13 Coping With Cancer and All That Comes With It
Parent support meeting – 6:30-8 pm at CURE.
Child care available with reservation.
10/22 Bereavement Group – 7-8:30 pm at CURE.

NOVEMBER

11/7 CURE at the Renaissance Art Gallery Fundraiser
H.H. Warner Building, 74 St. Paul Street
11/10 Coping With Cancer and All That Comes With It
Parent support meeting - 6:30-8 pm at CURE.
Child care available with reservation.

Many thanks!

Fundraisers

Rock & Roll Jamboree sponsored by Our Charity Events, Tim Lane and family, $1703
Shooters, Leroy NY, anniversary benefit sponsored by Tania Walsh and Amy Burnside, ($320 and in-kind donations)
Rochester Knighthawks–Bugaboo Creek celebrity bartending, auction $4000
21st Annual Monroe County High School Senior Select Hockey Game, organizer John Nuccitelli–$6125
Annunciation Greek Orthodox Church–festival $1000

In Kind Donors

Roberta Thornton–crocheted hats
Helen Pluta–large Teddy Bear
Fran Kreider–blankets, hats, calendars
Hope Kellogg–assorted toys, candies, stuffed animals,
and games
Mike Maira–shampoo
Locker Room Sports–Senior Select Hockey
Tournament sponsor
Jen Wolcott & Grace Johnson–quilts
David & JoAnne Callahan–blankets
Kaitlyn Lane–Girl Scout project-personal care kits

Vespa Raffle Sponsors

Country Rode Motowerks BMW & Vespa Rochester
Casa Larga Vineyards
Canandaigua National Bank & Trust
Chi-Wah Aveda
Parkleigh

Wishlist

Items for families facing long hospital stays
Gas cards from Hess
Single serve size packages of snacks and juice
Personal care items (travel size): deodorant, shaving cream,
tissues, nail clippers, body lotion, nail files.

Office supplies:

Floor and table lamps Bottled water
White copy paper 20 lb or 24 lb Decaf coffee
Plastic table covers Iced tea mix
Toys:
New books and DVDs for babies through teens

release-date:

July 4, 2008

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