Circle of Care | The Purple Pages | Directory of Resources and Services

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Your Child Has Just Been Diagnosed

Initial Resources

Tips for Treatment

Moving Forward

Unique Opportunites

Financial Help

Travel Assistance

Specialized Care

Books

Videos

About

The Purple Pages

A curated directory of essential resources to guide you through your childhood cancer journey.

Circle of Care for families of children with cancer

144 Danbury Rd, Wilton, CT 06897
203-663-6893
info@thecircleofcare.org
www.thecircleofcare.org

We get it. We’ve been there. We’ve felt what you’re feeling now, and we remember. As two moms of children with cancer, we quickly learned the tremendous impact this diagnosis would have on our normal routine and our lives. Our sons were ages three and ten at the time – and we were fortunate enough to have found each other in a support group for moms and siblings of kids with cancer.

We knew we had to give back and share what we had learned so we could help those like you and your family who are just beginning on this difficult and often isolating journey.

Circle of Care is here for you and your family as you navigate what lies ahead – and this book, The Purple Pages, is just one of the many ways we can help. This resource guide was created for families like yours by others who have been there to help you easily access the resources you may need.

We invite you to visit our website to find out about the many programs available to you – from a day-of-diagnosis care bag filled with essentials for hospital stays, to emergency financial assistance to help alleviate critical financial needs, and so much more in between.

thecircleofcare.org

We know that kids need more than medicine to heal. Because of that, we are here for you.

Liz and Dawn

Co-Founders

Your Child Has Just Been Diagnosed

This resource guide includes invaluable information, compiled by people who faced the same situation that you are facing now. They, too, found themselves as parents of children diagnosed with cancer or as teens facing it themselves. You are not on this journey alone. This guide is full of information that has been gathered and edited carefully for different stages of treatment. Although we have broken the information down into sections, many have found it helpful to peruse all the resources.

Take this journey day by day - and use this resource guide to help you through those tough days when you just wish you could find an answer. We have culled the knowledge from hundreds of parents who have been in your shoes, and if there is one common thread through all their comments, it is “Wow, I wish someone had told me that.”

We want our guide to be as thorough as possible and we welcome your suggestions. If you find that any of the resources in this guide are out of date or you discover any resources through your own research that you feel may be helpful for other families, please let us know by emailing info@thecircleofcare.org.

The most important piece of advice that all parents offered when we asked how they handled speaking to their child about cancer was to “keep it simple”. Only address the issue at hand. Young children may not need to know what is going to happen on a long-term basis – but they do need to know what to expect in the short-term. Another piece of advice was to “accept what is happening today.” You may be dealing with anything from injections, shunts, and nausea to long periods of bed rest in a hospital.

Stay positive. Children will follow your lead. If you let them know that this situation is not forever, they will accept that, and you should too.

We live in a connected age. Facebook, Snapchat, and Instagram are the obvious ways to keep people informed. Parents react in various ways to stressful situations. By keeping people informed with one site, rather than through several channels, everyone who you need to update can know what is happening as often as you care to tell them. Options for this include creating a private Facebook group or using a dedicated website like caringbridge.com.

You’re going to need help. Whether it’s help getting your other children to and from school and activities or help with meals or cleaning, you should accept assistance from others.

Lotsahelpinghands.com is another free website that lets you itemize the things you need help with – babysitting, rides, meals, sitting with your child during treatments – and allows your friends to sign up for tasks on a common calendar.

Although it may feel like all attention should be on your sick child, to be able to face this journey you also need to take care of yourself.

Be kind to yourself. Get enough sleep. Eat properly. Find time to exercise. You are experiencing one of the greatest trials a parent can experience. It is well documented that you must be as centered and calm as you can before you can help others. Cry when you need to. Allow yourself to laugh. Letting your emotions out is healthy.

Circle of Care was founded by moms who met in a support group. Finding the right group for you, whether local or online, can change your life. If you are hesitant to join a group and would rather be put in contact with one other parent who has been in your shoes to get started, Circle of Care’s “Lifeline” program can help. Email us at info@thecircleofcare.org or call (203) 663-6893 to be connected with a buddy.

Another easy way to take care of yourself is to keep a journal with you. Sometimes simply jotting down how you are feeling can get you through a rough spot.

Every child responds differently to treatment. Planning as much as possible allows you to feel better prepared for unexpected challenges. It helps to keep a suitcase packed for emergencies and routine hospitalizations – our Bag of Love can function as your “go bag” if you find it easy to carry. Keeping a favorite stuffed animal or blanket on hand to comfort your child can ease the stress of a late-night trip to the emergency room.

Keeping a note in your phone or a page in your journal up to date with any medications your child has received any side effects your child has experienced can ensure nothing is forgotten in the hustle and bustle of an impromptu hospital visit. (Check out Chemowave app)

Having all important information on hand and a bag packed and ready to go is a great way to prepare for the unexpected and reduce stress and confusion during an emergency or an unexpected situation.

Initial Resources

Circle of Care

144 Danbury Road
Wilton, CT 06897

(203) 663-6893

www.thecircleofcare.org

Circle of Care supports children with cancer and their families from the day of diagnosis through treatment and beyond, providing direct, practical, emotional and financial support. This website contains information about their resources and programs including: Bags of Love, a day of diagnosis care package; Lifeline, a parent-to-parent support program; Hospital Volunteers; Art From the Heart in-room makeovers; and Financial Assistance.

CaringBridge

(651) 452-7940

www.caringbridge.org

This nonprofit organization helps visitors create a website for keeping friends and family updated on a patient’s status. There is no charge for the use of this website. Creating a resource such as this can help alleviate phone bills and keep extended family up-to-date on their relative’s health.

Lotsa Helping Hands

www.lotsahelpinghands.com

Lotsa Helping Hands is a free service that creates communities of friends, neighbors, relatives and others who rally around a family or person in need. Individuals can sign up for day to day tasks that the family may need help with, such as transportation or meals, and even automatically send out email reminders. The site is also a platform for announcements and photos about the ill person, so everyone can stay up-to-date on his or her progress.

Nannies as Needed

(203) 874-4939

This company offers premier babysitting service, providing temporary, short term and emergency childcare services. They don’t take HUSKY insurance, but they offer somewhat affordable fees. They are flexible and can respond to last minute/same day requests. The cost for an annual membership is between $75-100, which is a one-time fee. The fee per hour is $20-25.

There are many resources available for teens and young adults that can help to restore as much normalcy as possible – and while having cancer at any age – especially this one – is not easy, there are many unique opportunities that are available to you because of your diagnosis.

This section can help you navigate some of the things that will be coming down the road and offer a bit of diversion along the way. Please reach out to people. If you have a resource that has helped you and you think should be added to this section - please email us at info@thecircleofcare.org

Circle of Care
Adolescent/Young Adult Program

www.thecircleofcare.org/services-programs-for-you/adolescentyoung-adult-program.html

Get on our mailing list for all adolescent & young adult events and opportunities! This program provides unique connection opportunities for patients ages 15-26.

Cancer Care Young Adult Services

www.cancercare.org/tagged/young_adults

CancerCare provides free, professional support services for young adults affected by cancer, as well as cancer information and additional resources. Services include: counseling, support groups and educational telephone and online workshops.

Chick Mission

www.thechickmission.org

Chick Mission’s goal is to give any affected woman a choice regarding her future family before lifesaving treatment makes decisions for her. The organization advocates, educates, and provides “Hope Grants” for coverage for fertility preservation for those in New York. You can also find information here about appealing denied claims.

Livestrong Fertility

www.livestrong.org/what-we-do/program/fertility

If you are thinking about the possibility of being a parent after cancer, Livestrong Fertility can help. They are dedicated to providing educational information and access to resources that support cancer patients and survivors whose cancer and its treatment may affect fertility. Through the Livestrong Fertility discount program, cancer survivors can access discounted rates on fertility preservation services.

Look Good...Feel Better

www.lookgoodfeelbetter.org

Look Good Feel Better is a free public service program that provides useful information and tips for men, women, and teens dealing with their physical appearance altered by cancer treatment. The program acknowledges social stress resulting from this change in appearance.

Livestrong

www.livestrong.org/we-can-help/just-diagnosed/young-adults-with-cancer

This organization’s website is directed specifically toward young adults dealing with cancer. It includes real-world advice, discussion boards, and recommendations for books, music, and movies.

Stupid Cancer

(212) 619-1040

www.stupidcancer.org

Stupid Cancer is the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media. Their innovative, award-winning and evidence-based programs and services serve as a global bullhorn to propel the young adult cancer movement forward.

13Thirty

(585) 563-6221

www.13thirty.org

This website provides social support for teens undergoing cancer treatment. It addresses issues such as body image, nutrition, dealing with others, going back to school, and struggling to live a normal teenage life. This site connects teens by providing a network of cancer patients who can discuss and resolve their cancer-related issues.

The SAMFund

89 South Street, Suite LL02
Boston, MA 02111

(617) 938-3484

www.thesamfund.org/

This fund provides support for young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment. Through direct financial assistance and free online support and education, the SAMFund helps young adults move forward toward their personal, professional, and academic goals.

The Ulman Cancer Fund for Young Adults

(410) 964-0202

www.ulmanfund.org

The Ulman Cancer Fund for Young Adults provides free support programs, education, and other resources. By using these free services, they hope young adults will benefit as well as promote awareness and prevention of cancer.

Books For Young Adults and Teens

Videos For Young Adults and Teens

This section can tell you all about online games, community events, ways to pass the time during treatment, and camps that are around for kids like you!

Circle of Care
Art from the Heart Program

144 Danbury Road
Wilton, CT 06897

(203) 663-6893

www.thecircleofcare.org/services-programs-for-you/afth/

Circle of Care has transformed more than 150 rooms and play areas in the homes of young patients using paint, fabric, furniture and love - all inspired by the boundless imagination of every child. Children in Connecticut ages 4-18 who are presently undergoing treatment are eligible to apply; recipients are chosen by availability of volunteer teams in the area.

Gabe’s Chemo Duck Program

(615) 830-0126

www.chemoduck.org/order-ducks/parents/

This organization has a program that offers a cuddly, friendly stuffed animal duck that can be used to teach children about cancer and hospital treatments. The duck comes with a book for parents on how best to use the duck, as well as an activity book for kids.

The Sunshine Kids Foundation

(Eastern Region)

www.sunshinekids.org/contactus.html

Sunshine Kids provides free events for children and families with cancer. Some events include Haunted Halloween getaways, Winter Games ski trips, and more! Fill out the contact form linked above and check “Become a Sunshine Kid” before submitting, or ask your hospital’s social work or Child Life team if they have a partnership with the Sunshine Kids!

Books For Kids

Videos For Kids

While every part of you might be inclined to focus all attention on your sick child, it is important to spend time with your other healthy children too. Family dynamics shift dramatically when dealing with an illness. Here are some helpful thoughts about siblings.

Be honest. People in your community may inadvertently tell your children everything even if you don’t, so they need to hear it from you first!

Reassure your children. Make sure they know they didn’t do or say anything that caused their sibling’s cancer. Assure them that childhood cancer isn’t contagious, and it is very rare.

Make time for family visits to the hospital, if allowed. Let siblings visit your sick child - don’t worry that the hospital will be too traumatic… Imagining what happens there is usually scarier than seeing a sick brother or sister.

Encourage your children to express their feelings. Art and journaling can be great ways for children to get their feelings out even when they may not feel they have the right words to do so.

Talk about your family situation with teachers. Teachers can be a tremendous support to children during the day and can act as your eyes away from home. Give them needed information and you will find them ready to help.

Ask your hospital’s Child Life specialists for help. There are many sibling programs and camps both in and out of the hospital.

SuperSibs! (Part of Alex’s Lemonade Stand)

www.alexslemonade.org

Pediatric cancer affects everyone in the family. During the fight against cancer, siblings need to know that they, too, are special and important people, and that there is an organization that provides support for their unique needs. SuperSibs! helps children redefine the “cancer sibling” experience by providing support services, and by helping to draw out the greater and important lessons that may benefit these children later in their lives.

Why Charlie Brown, Why?

www.dailymotion.com/video/x7c3bbx

This Charlie Brown short is about a child whose friend has cancer. It comes highly recommended for younger school-age children. It is an excellent video for the child’s schoolmates and other groups to become familiar with before your child returns to regular activities.

Books For Siblings

Tips for Treatment

Treatment isn’t easy - there are many side effects and, just as every child is unique, their reactions to treatment are too. Many parents have found it helpful to keep a journal.

Side effects that can happen include weight gain, nausea, increased or loss of appetite, unusual temper (due to steroids), and hair loss. Learning from other parents can help you to be more prepared for treatments – our Lifeline program can help pair you with another parent who has been in your shoes and help you through.

During treatment, your children will need to take a lot more medicine than they are used to. Babies, toddlers, and even some young adults have never had to swallow pills and getting them to take their medicine may require some pretty creative solutions. Everything from applesauce to brownies has been used to get children to swallow their medication.

It is important to remember to check for reactions to drugs and what you are putting them in, but mostly anything goes if it is sweet and masks the taste. Some tips from other parents include:

  • Crushing up medicine and placing it in sweet liquids.
  • Purchasing tasteless gel capsules that can be filled with crushed up medication that may otherwise have a bad taste.
  • Inserting medication into small Jell-O bites.
  • Placing medication in a spoonful of applesauce.
  • Dissolving pills in liquid and then using a syringe.
  • Follow it up with candy like M&Ms or something sour!

We all know that eating the right foods can have many benefits, from our physical size to our mental health. Now, more than ever, nutrition is top priority.

Unfortunately, the drugs that work to fight your child’s illness can often make them feel like not eating ANYTHING - let alone things that are good for them. This section will provide resources on what sorts of foods might be more palatable and how you can combat nausea, dry mouth, and other issues.

Everyone needs new recipes, and there are several complete cookbooks you can download. If you find something that works especially well for you, please share it with us and we can add it to our nutrition resources section below.

Healing Meals Community Project

(860) 264-5864

www.healingmealsproject.org

This nonprofit organization prepares and delivers organic meals for families in health crises, while supporting young chefs with leadership skills, job readiness skills, nutrition and wellness education, and the joy of supporting the community.

Nutritional Needs for Kids with Cancer

www.kidshealth.org/en/parents/cancer-nutrition.html

For good information on how nutrition is important and what to eat during cancer.

Books about Nuitrition

Your child will be immune suppressed at times during treatment. Basic hand washing and avoiding crowds are your best first line of defense. Nature is your friend and can be good for all of you. Get outside and go for walks or, if you’re all exhausted, simply drive to a nearby pond or park and sit on a bench for a while. Just a change of scenery can be good for all of you!

Some ideas from other parents include:

  • “Camp outs” in the living room
  • Porch picnics
  • Taking up a new hobby like cooking, gardening, crafting

Never feel embarrassed about or ashamed of the measures you must take to keep your child healthy and safe. Your goal is to help your child and sometimes that means taking the time to educate the other parents whose children are important to your child.

Hair loss from chemo and radiation can be one of the most difficult side effects for children, especially teens. Preparing yourself and your child can help to make the transition a bit easier. This section shows you where to look for things you possibly never even knew existed – a good wig, flattering hats and scarves, and even applying makeup to replace lost eyebrows or eyelashes for teens and young adults.

Don’t be afraid to address the obvious. Talk about the loss of hair and why it is happening. Let your child make the decision to get a wig or not. Some kids and teens find embracing the hair loss to be empowering and others find comfort and normalcy in the use of wigs and scarves – all of these options are okay! Whatever will make your child comfortable is the route you should take – sometimes, trial and error is needed.

Try to be open about the process with everyone. There is nothing worse than friends stopping by for a visit and being unprepared for the new look your child is sporting.

Children with Hair Loss

(734) 379-4400

www.childrenwithhairloss.us

Children With Hair Loss provides human hair replacements at no cost to children and young adults facing medically-related hair loss for patients ages 0-21.

Good Wishes Scarves

www.goodwishesscarves.org

The mission of Good Wishes Scarves is to provide, free of charge, one beautiful “It’s a Wrap” or “Good Wishes” scarf to anyone experiencing the thinning or loss of hair as a result of illness or treatment.

Hope Scarves

www.hopescarves.org

Hope Scarves is an international non-profit based in Kentucky. They collect scarves from around the world and provide them for free to those in active cancer treatment.

Locks of Love

(561) 833-7332

https://locksoflove.org

Locks of Love provides high-quality hair pieces to financially disadvantaged children (ages 0-18) suffering from long-term medical hair loss as a result of any diagnosis.

Pink Wig Project

www.pinkwigproject.org

Get a fun, sassy, pink wig to dress up your hair replacement collection! The Pink Wig Project provides pink wigs to cancer patients as a reminder to stay strong and continue living life…

Wigs for Kids

(440) 333-4433

www.wigsforkids.org

Wigs for Kids is a nonprofit organization that provides hair replacement solutions for children affected by medical hair loss.

Moving Forward

There are certainly difficulties involved in having a child out of school for extended periods of time. The Department of Education has guidelines for advocating for your child to make sure they don’t fall behind. Sometimes, getting back to the normal day-to-day habits of school seems overwhelming. Here are some practical tips/resources for what you might want to consider before the actual day that your child returns to school:

  • Before returning to school, meet with the school administration, your child’s teachers, and the school nurse. Explain your child’s diagnosis and treatment plan in detail.
  • Don’t be afraid to ask for accommodations for your child’s needs, including, but not limited to, unexpected absences, school policies about homework completion, in-home tutoring, permission or special plans to go to the nurse or restroom when necessary, wearing hats or head scarves, etc.
  • You know your child best. Some children thrive on attention and want to share every detail of their ordeal, while some want no attention at all. Talk to them and lay out the different scenarios.
  • Be aware that many children (and adults!) don’t know how to deal with sickness. Getting back into the swing of school can be challenging but keeping open lines of communication between you and your school’s administration is key.

Connecticut State Department of Education

450 Columbus Boulevard
Hartford, CT 06106

(860) 713-6543

www.portal.ct.gov/SDE

As a result of their diagnosis, a child may qualify for an IEP, IDEA or 504 plan. Refer to this website to download the IEP manual to learn more about how to advocate for a child within his or her school system.

The Learning Foundation of Fairfield County

1109 Brookside Drive
Fairfield, CT 06824

(203) 520-2070

Susan Bemus provides tutoring and educational consulting to families of children with learning issues. Her services range from evaluation, testing, IEP and 504 plan review and development, tutoring, and social skills workshops. She can assist families who wish to work with their child’s school to develop a good working home/school relationship, from which the patient will benefit.

Taking Cancer to School

www.amazon.com/Taking-Cancer-School-Special-Kids/dp/1891383116

This illustrated and fun-to-read book simplifies and normalizes complicated childhood conditions, like cancer.

Yay! You’ve completed treatment and have been given the go-ahead to resume “normal” life. This section is here to guide you as you move forward into survivorship.

Everyone’s journey is different, and each family faces their own challenges, but rest assured that someone, somewhere, is feeling just as you are now. Talking through how you will manage all the “what if” scenarios you have in your head can be helpful. Just as you did in the beginning of this journey - do not be afraid to ask questions and accept help.

HEROS Clinic: For patients of Yale New Haven Children’s Hospital

(203) 688-2000

Yale New Haven Children’s Hospital has a HEROS clinic for survivors of childhood cancer. Thankfully, more children are surviving cancer than ever before and enjoy healthy, active lifestyles; however, they are left at an increased risk of various health conditions. This clinic was established to exclusively help children and adults who were treated for cancer more than five years ago.

National Coalition for Cancer Survivorship (NCCS)

Silver Spring, MD

(877) 627-7937

www.canceradvocacy.org

This organization addresses the needs of long-term cancer survivors, and advocates for change in healthcare to maximize the survivor’s access to optimal treatment and support. It also provides an extensive list of helpful publications.

Reach for the Stars: For patients of Connecticut Children’s Medical Center

Hartford, CT

(860) 545-9630

The Reach for the Stars Survivorship Clinic at CCMC emphasizes education for young adults transitioning to managing their health with a goal of medical autonomy and a healthy lifestyle. The clinic provides a comprehensive summary of all your treatments, summarized in your web STAR Passport. The recommendations for your future surveillance and care will be based on the comprehensive Children’s Oncology Group (COG) CureSearch Healthy Links.

Books on Surviviorship

Unique Opportunities

A big part of many children’s lives is the experience of camp. Perhaps the most well-known camp for children with illnesses is Hole in the Wall, founded by Paul Newman - but there are many others. Your child may now have special needs but there are many wonderful options for both a child dealing with illness, and even for that child’s siblings.

Some have small fees and many are free to children with cancer.

Camp Mak-a-Dream

(406) 549-5987

www.CampDream.org

Camp Mak-a-Dream is operated by Children’s Oncology Camp Foundation and is a free, medically supervised camp for cancer patients (ages 6-25) and their siblings (ages 6-17). Their facilities include modern cabins, fully accessible pool, art studio, health center, archery range, and more.

Camp Rising Sun

(203) 481-7277

www.camprisingsun.com

This camp was created for children (ages 5-17) diagnosed with cancer. Children attend the camp, held at Camp Jewell in Colebrook, CT for free, and all staff members are dedicated volunteers who show compassion and concern for the child’s well-being and enjoyment of life. The camp has a pediatric oncologist and nurses on duty 24 hours a day during camp week. This camp occurs for one week in the summer, with a mini-camp occurring in the off-season as well.

Camp Simcha

Glen Spey, NY

(212) 699-6661

www.campsimcha.org/camp-simcha

Since 1987, Camp Simcha has been a pioneer in kosher camps for children with cancer and other medically catastrophic illnesses. The grounds are located in Glen Spey, NY, on the Jack and Moishe Horn Campus, which spans 125 acres. The camp runs two-week sessions for children and young adults (ages 5-20) who come from throughout North America, Europe, and Israel who have encountered serious illness.

Camp Sunshine

35 Acadia Road
Casco, ME 04015

(207) 655-3800

www.campsunshine.org

Families attend one of the week-long camp sessions for free, which include meals, on-site medical services, counseling services, and recreational activities. While at camp, located on Sebago Lake in Maine, each family stays in a private suite, and is sponsored by an individual, civic group, corporation, or foundation. This camp runs year-round.

First Descents

3827 Lafayette Street, Suite 161
Denver, CO 80205

(303) 945-2490

www.firstdescents.org

First Descents is a free kayak and adventure camp for young adults ages 18 or older who have been impacted by cancer. Started by professional kayaker and Nike ACG athlete Brad Ludden, the organization uses outdoor activities to help campers face challenges and overcome obstacles. This program is dedicated to improving the lives of Adolescent/Young Adult cancer patients and survivors.

Happiness is Camping

62 Sunset Lake Road
Hardwick, NJ 07825

(908) 362-6733

www.happinessiscamping.org

Through their Family Camp program, Happiness is Camping provides children with cancer (ages 6-15) and their immediate family members, with a traditional camp experience for free. Happiness is Camping also offers a summer camp for kids ages and their siblings (ages 6-16), and a teen program for those who are 16 years of age. Campers climb the high ropes, shoot archery, swim in the pool, and much more.

Hole In The Wall Gang

565 Ashford Center Road
Ashford, CT 06278

(860) 429-3444

www.holeinthewallgang.org

The Hole in the Wall Gang Camp, founded by Paul Newman in 1988, is a nonprofit residential camp. This camp offers options for summers camps, family weekends, and young adult programming. More than 1,000 children and adolescents (ages 7-15) from across the country and abroad attend each year for free. The camp also offers a week for siblings in the summer.

The Okizu Foundation

83 Hamilton Drive, Suite 200
Novato, CA 94949

(415) 382-9083

www.okizu.org

Okizu is committed to the continuing support of the oncology and siblings camping programs. The Foundation’s mission is to provide peer support, respite, mentoring, and recreational programs to meet the needs of all family members. Okizu offers a variety of camps for kids, teens, young adults ages 18 or older, siblings, and families.

Silver Lining Ranch

Little Star Foundation
174 Watercolor Way, Suite 103, B343
Santa Rosa Beach, FL 32459

(800) 543-6565

www.littlestar.org

The Benedict-Forstmann Silver Lining Ranch program is home for up to twenty children per session throughout the summer, finishing up the year with winter ski groups. Horseback riding, whitewater rafting, campfire picnics, and downhill skiing are the adventurous settings in which children share common medical challenges and establish lifetime friendships. A pediatric oncologist, oncology nurse, counselor, and social worker are available 24 hours per day.

In addition to camps, there are other organizations that can make a child’s dream come true… From meeting astronauts and sports stars to trips to Disneyland and beyond - all sorts of fantasies have been fulfilled by these organizations.

Children’s Wish Foundation International

(770) 393-9474

www.childrenswish.org

This foundation has fulfilled the wishes of children (18 years and younger) with life-threatening illnesses in 32 countries around the world. For children too young to express their wishes, the organization’s Young Minds Program can help determine what their wishes might be.

Dream Come True of Western Connecticut, Inc.

(203) 790-7333

www.dreamcometruect.org

Western Connecticut Dream Come True was founded in 1984 with one purpose in mind: to grant dreams to seriously, chronically and terminally ill children in Fairfield, Litchfield and New Haven counties. Some dreams that have been granted include travel.

ELLE Foundation

(908) 393-5529

www.ellefoundation.org

The ELLE Foundation’s primary mission is to grant wishes to children with a recurrence of cancer.

Little Wonder

4 Science Park
New Haven, CT 06511

www.littlewonder.org

Little Wonder is a non-profit organization dedicated to enriching the lives of patients with cancer by providing them tickets to local concerts, family entertainment, live theater, and sporting events. This experience is completely free of charge.

LIVFREE

www.livfreetoday.org

LIVFREE’s mission is to provide families that are battling pediatric cancer and its treatments with tickets to attend an event of their choice.

Make-A-Wish Foundation

(CT Chapter)

(203) 261-9044

www.wish.org

The Make-A-Wish Foundation has enriched the lives of children with life-threatening medical conditions through its wish-granting work since 1980. The foundation’s mission reflects the life-changing impact that a Make-A-Wish experience has on children, families, referral sources, donors, sponsors, and entire communities. This chapter grants wishes to children and adolescents (ages 2½-18) with life-threatening illnesses throughout the state of Connecticut.

The Marty Lyons Foundation, Inc.

(631) 543-9474

www.martylyonsfoundation.org

The Marty Lyons Foundation, Inc. fulfills the special wishes of children who have been diagnosed with a life-threatening or terminal illness. The wish applicants must reside or be treated in Connecticut, Florida, Georgia, Maryland, Massachusetts, New Jersey, New York, North Carolina, Pennsylvania, South Carolina, or Texas. MLF provides a first and second wish. The Second Wish Program is for children who have received a first wish 24 months prior, have exhausted all medical options, and are essentially at end-of-life stage or are receiving hospice care.

Songs of Love Foundation

P.O. Box 750809
Forest Hills, NY 11375

(800) 960-7664

www.songsoflove.org

Songs of Love is a nonprofit organization with a volunteer group of more than 200 artists who produce personalized musical portraits for children with chronic or life-threatening diseases.

Special Wishes

(860) 274-5224

www.specialwishes.org

Special Wishes, Inc. gives Connecticut children between the ages of 3 and 21 whatever happiness they can - a moment of joy - by making a wish come true. Whether it be a trip to Disney World or another special destination, tickets to a rock concert or sporting event, a day with a favorite movie star or professional athlete, or a special shopping spree, they make wishes come true.

The Starlight Children’s Foundation

www.starlight.org

The mission of the Starlight Starbright Children’s Foundation NY/NJ/CT is to brighten the lives of seriously ill children, and their families, through imaginative and resourceful programs and services that empower, educate, and inspire. Each year, this foundation serves over 250,000 critically, chronically and terminally ill children throughout New York, New Jersey, and Connecticut.

Sunshine Foundation

(215) 396-4770

www.SunshineFoundation.org

This foundation grants wishes to chronically or terminally ill, physically challenged, and abused children and adolescents (ages 3-18) across the country.

Beyond the Cure Ambassador Scholarship Program

500 North Broadway, Suite 1850
St. Louis, MO 63102

(314) 241-1600

www.thenccs.org/scholarship

The National Children’s Cancer Society awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation. 58 scholarships will be awarded each academic year.

Financial Aid Information

www.finaid.org

This website offers information about college scholarships, loans and other types of financial aid.

National Collegiate Cancer Foundation

www.collegiatecancer.org/

This foundation offers competitive awards based upon financial need, quality of essay and recommendations, displaying a “Will Win” attitude, and overall story of cancer survivorship.

Northwestern Mutual Foundation

www.scholarsapply.org/nmsurvivors

www.scholarsapply.org/nmsibling

This foundation offers 25 scholarships for survivors of childhood cancer and 10 for the siblings of those affected.

The SAMFund

89 South Street, Suite 701
Boston, MA 02111

(617) 938-3484

www.thesamfund.org/get-help/grants/

The SAMFund provides financial assistance to young adults as they move forward with their lives after cancer. Their grants can be used toward medical bills, insurance premiums, tuition, loans, computers, etc.

The Susan Fund

8 Hilly Field Lane
Westport, CT 06880

www.thesusanfund.org

Dedicated to providing educational scholarships to Fairfield County Students diagnosed with cancer.

Financial Help

For assistance with paying bills during your cancer journey, these organizations can be very helpful. They can provide you with advice and aid in filing papers and give you a timeline for reimbursement.

Circle of Care

144 Danbury Road
Wilton, CT 06897

(203) 663-6893

www.thecircleofcare.org/services-programs-for-you/financial-assistance/

Circle of Care’s Financial Assistance program exists to support families with critical non-medical expenses like rent, mortgage, utilities, gas and groceries, and more.

American Financial Solutions/Genus

(888) 282-5899

www.myfinancialgoals.org

This nonprofit credit counseling agency offers free debt management and educational programs that help financially distressed families. Counselors are available by phone.

CancerCare, Inc.

(800) 813-HOPE (4673)

www.cancercare.org

CancerCare provides free professional help to people with cancer and their families in Connecticut through counseling, education, information, referral, and direct financial assistance.

Candlelighters - Childhood Cancer Family Alliance

www.candle.org

Candlelighters Childhood Cancer Family Alliance provides emotional, educational and practical support to families of children with cancer. Candlelighters serves all children with cancer and their families, long term survivors of childhood cancer, adult survivors of childhood cancer and their families, and bereaved families.

Connecticut Cancer Foundation

www.ctcancerfoundation.org/helping-ct-cancer-patients

The Connecticut Cancer Foundation can provide support with basic living expenses to Connecticut residents and their families facing a cancer diagnosis. The CT Cancer Foundation suggests asking your hospital social worker about seeking a grant from the organization and they will help you with the application.

Family Reach Foundation

(973) 394-1411

www.familyreach.org

Family Reach provides financial support to families with a child or young adult fighting cancer. Eligible families can receive support for home mortgages, utilities, insurance, transportation expenses, child care, palliative care and other special patient needs. Ask your social worker for assistance in completing their application.

Friends of Karen, Inc.

118 Titicus Road
North Salem, NY 10560

(914) 277-4547

www.friendsofkaren.org

Friends of Karen is dedicated to providing emotional and financial support, as well as advocacy to children with life-threatening illnesses and their families. They have served children throughout the New York metropolitan area, including Fairfield County, CT, for more than 25 years. Their social workers access and coordinate all available public and private resources and/or provide referrals to these resources.

Leukemia & Lymphoma Society

(888) 557-7177

www.lls.org

This organization funds research, sponsors national education programs for the public and the medical community, and publishes a large number of booklets on cancer-related topics. Financial assistance is also available to families through this organization.

Medical Bill Detectives

376 Belden Hill Road
Wilton, Connecticut, 06897

(203) 856-5121

www.MedicalBillDetectives.com

This group was founded to assist anyone with medical or hospital bills. Their goal is to spot and correct medical billing errors, and to encourage fair billing and compliance practices.

National Children’s Cancer Society

500 North Broadway, Suite 1850
St. Louis, MO 63102

(314) 241-1600

www.thenccs.org

Refer to the “Pediatric Healthcare and Cancer Organizations” section for more on this organization, and its contact information.

Sparrow Clubs USA (National)

906 NE Greenwood Ave, Suite 2
Bend, OR 97701

(541) 312-8630

www.sparrowclubs.org

Sparrow Clubs USA is establishing an organization of school-based clubs to help local children in medical crises and to promote youth compassion. The organization provides a grant for an ill child that local healthy children, schoolmates and friends earn by doing community service or fundraising.

The SCOTTY Fund

(203) 743-1388

www.scottyfund.org

The SCOTTY Fund is a non-profit, charitable organization, which provides financial and family support to children with life-threatening and critical illnesses and their families.

The Tommy Fund for Childhood Cancer

Yale-New Haven Children’s Hospital
New Haven, CT

(475) 267-8966

www.tommyfund.org

The Tommy Fund provides both direct and indirect financial assistance for families dealing with childhood cancer. It also funds various hospital initiatives.

Insurance, co-pays, deductibles: what’s covered and what’s not can be tough to focus on. Understanding your plan and available resources can make your financial life more manageable. Whether you have insurance, or your insurance doesn’t seem to cover you entirely, you will find sites in this section that can help.

Centers for Medicare and Medicaid Services (CMS)

(800) MEDICARE (633-4227)

www.CMS.HHS.gov

CMS provides information on Medicare and Medicaid hospice benefits.

First Hand Foundation

2800 Rockcreek Parkway
Kansas City, MO 64117

(816) 201-1569

www.firsthandfoundation.org

First Hand Foundation is a philanthropic nonprofit foundation established by the Cerner Corporation. It helps the families of children with health problems address the financial aspects of their child’s healthcare. They give free community health assessments for those who can’t afford it.

Healthcare for Uninsured Kids and Youth (HUSKY)

P.O. Box 1543
Hartford, CT 06144

(877) 284-8759

www.huskyhealth.com

The HUSKY Plan is designed to help all children who don’t have health insurance in Connecticut. Many parents don’t have health coverage for children through work, but with HUSKY, children are always covered. HUSKY is funded by the state and federal governments and administered by the Department of Social Services.

HealthWell Foundation

(800) 675-8416

www.healthwellfoundation.org

When health insurance is not enough, HealthWell can fill the gap. They help patients living with chronic and life-altering illnesses pay their share of prescription drug copayments, deductibles, and health insurance premiums.

Insure Kids Now!

(877) 543-7669

www.InsureKidsNow.gov

The U.S. Department of Health and Human Services began the Insure Kids Now! Program to link the nation’s uninsured children with free or low-cost health insurance.

The National Association of Insurance Commissioners (NAIC)

(816) 842-3600

www.NAIC.org

This organization is composed of state insurance regulators from every state, the District of Columbia, and five U.S. territories. The commissioners regulate the conduct of insurance companies in each of their respective states.

Patient Advocate Foundation

(800) 532-5274

www.patientadvocate.org

This foundation provides publications, helps with insurance problems, advises on job retention and debt crisis, and provides attorney referrals.

Social Security Administration

(800) 772-1213

www.ssa.gov

Contact the Social Security Administration in order to receive disability income for your child.

State of Connecticut Insurance Department Consumer Affairs Division

153 Market Street, 7th Floor
Hartford, CT 06103

(860) 297-3800

www.ct.gov/cid/site/default.asp

The Insurance Department’s mission is to protect the consumer by administering and enforcing the insurance laws in the most responsive and cost effective manner to ensure the financial reliability of all regulated entities. This website contains information for consumers on their rights.

Some of the drugs that your child will be taking are expensive. Here are a few prescription assistance program sources that can help you manage this part of treatment.

Centers for Medicare & Medicaid Services – Prescription Drug and Other Assistance Programs (Medicare)

7500 Security Boulevard
Baltimore, MD 21244-1850

(800) MEDICARE

www.medicare.gov

The Prescription Drug and Other Assistance Programs section of this website provides information on public and private programs that offer discounted or free medication, programs that provide assistance with other healthcare costs, and Medicare healthcare plans that include prescription coverage

NeedyMeds, Inc.

(800) 503-6897

www.needymeds.com

Many drug manufacturers have what’s called Patient Assistance Programs. These programs are designed to help people obtain medicine for low or no cost when they otherwise would not be able to afford it. This website contains the latest, most complete, and most accurate information on patient assistance programs available. The site has a database for “drugs” and “programs.”

RxList

www.rxlist.com

This website provides information on specific medications, including those used by cancer patients.

Together Rx Access, LLC

http://www.trxaccess.org/p/about-us/contact-us.aspx

With Together Rx Access®, individuals and families without prescription drug coverage can gain access to immediate savings on hun- dreds of brand-name and generic prescription products at their neighborhood pharmacies. It also connects you with resources about ac- cess to coverage options and more.

Travel Assistance

Sometimes the services you need are halfway across the country in a different treatment center. Fear not! You may be eligible for free flights or travel accommodations. The organizations in these pages can help you get those air miles at no or greatly reduced cost.

Air Care Alliance

2060 State Highway 595
Lindrith, NM 87029

(888) 260-9707

www.aircareall.org

ACA is a nationwide association of humanitarian flying organizations that provide flights for healthcare, compassion, and community service. Volunteer pilots fly for patient transport, disaster relief, and for other public ser- vice missions.

Corporate Angel Network, Inc. (CAN)

Westchester County Airport
1 Loop Road
White Plains, NY 10604-1215

(866) 328-1313

www.corpangelnetwork.org

CAN is a nationwide nonprofit program that uses empty seating on corporate jets to fly cancer patients to treatment centers. Their services are free of charge to the patient. Patients must be able to walk and travel without life-support systems or medical attention. A child may be accompanied by up to two adults. CAN will also fly donors. There are no costs or financial need requirements.

Mercy Medical Airlift - The National Patient Travel Center

(800) 296-1217

www.patienttravel.org

Mercy Medical Airlift provides free transportation to medical treatment for those who can’t afford the transportation or tolerate it due to their health. Their website also provides information on similar organizations.

Miracle Flights for Kids

(702) 261-0494

www.miracleflights.org

This organization purchases commercial airline tickets, uses private aircraft, and combines resources from individual donors to provide free transportation to medical treatment centers all across America.

Patient AirLift Services

(888) 818-1231

www.palservices.org

Patient AirLift Services covers flights in the entire northeast United States as far west as Ohio and as far south as Virginia for patients who must travel great distances for treatment or are too fragile to endure a regular flight.

Wings – Flights of Hope

(716) 667-0816

Commercial flights often restrict patients from travel, due to germs and schedule. This is where Wings Flight can fly the patient as the aircrafts are continually taking in fresh air through the flights. Patients are allowed to keep their oxygen with them and in use on all Wings Flights.

Wings Flights are available to all that may need medical attention. Many of our patients are children, however adults of all ages are also flown free of charge. All patients have the option to have family members join them on the flights, also free of charge.

There are several low-cost places to stay if you are in treatment far from home.

Cancer Support Community: AirBnB Partnership

www.cancersupportcommunity.org/airbnb

AirBnB has partnered with the Cancer Support Community to offer free housing for patients and caregivers, as long as they meet certain criteria. Visit the website or call the helpline to see if you qualify.

In Connecticut:

Ronald McDonald House

860 Howard Avenue
New Haven, CT 06519

(203) 777-5683

www.rmhc-ctma.org

A comfortable house with 12 guest rooms to support the needs of families with sick children.

The Suites at Yale New Haven

25 Dwight Street
New Haven, CT 06511

(203) 654-7500

www.ynhh.org/patients-visitors/amenities/suites.aspx

This is a new hotel offering rooms for families and caregivers of patients who are being admitted for short or long-term inpatient hospital care. It is located two blocks from the Smilow Cancer Center at Yale New Haven Hospital. Daily, weekly, and monthly rates are available.

In Boston:

AstraZeneca Hope Lodge Center

125 S. Huntington Avenue
Jamaica Plain, MA 02130

(617) 396-5500

www.cancer.org/treatment/support-programsservices/hopelodge/boston

This state-of-the-art facility serves as a “home away from home” for patients traveling more than 40 miles to their outpatient treatments. There is no charge to stay at Hope Lodge, for either the patient or his or her caregivers. There is often a 1-2 month wait so call in advance if you know you will need lodging in this area.

Christopher’s Haven

One Emerson Place, Suite 2-N
Boston, MA 02114

(857) 233-4178

www.christophershaven.org

Christopher’s Haven is a home for kids and their families while they battle cancer. The home is a support system to help with things large and small, and a community where families can be together, share a laugh, be comforted, and comfort others.

Boston House

22 Kent Street
Brookline, MA 02446

(617) 734-3333

www.thebostonhouse.org

Boston House is “a home away from home for children with cancer and their families.” Families eligible to stay at Boston House are treated at Boston Children’s Hospital or Dana Farber Cancer Institute’s Jimmy Fund Center.

Ronald McDonald Boston Harbor

250 First Avenue, Suite #318
Boston, MA 02129

(617) 398-6458

www.rmhbostonharbor.org

Where families of seriously ill children can stay to be close to their child who is receiving treatment in Boston.

In New York City:

Ronald McDonald House

405 East 73rd Street
New York, NY 10021

(212) 639-0100

http://www.rmh-newyork.org

When families must travel to New York for their child’s life saving cancer treatment, Ronald McDonald House New York offers them a safe, clean, and supportive “home away from home” in close proximity to major hospitals. They provide private bedrooms, family rooms, kitchens, a library, computer rooms, a playroom, laundry facilities, tutoring, activities, and transportation services.

Specialized Care

Circle of Care

144 Danbury Road
Wilton, CT 06897

(203) 663-6893

www.thecircleofcare.org

Circle of Care supports children with cancer and their families from the day of diagnosis through treatment, and beyond providing direct, practical, emotional and financial support. Our website contains information on our resources and programs including: Bags of Love, a day-of-diagnosis care package; Lifeline, a parent-to-parent support program; Hospital Volunteers; Art From the Heart Room Makeovers at Home; and Financial Assistance.

American Academy of Pediatrics

750 Main Street, Suite 100
Hartford, CT 06103

(860) 525-9738

www.ct-aap.org

The American Academy of Pediatrics is an organization of 66,000 pediatricians committed to the optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults.

American Cancer Society

38 Richards Ave
Norwalk, CT 06854

(203) 563-0740

www.cancer.org

www.cancer.org/myacs/newengland

The American Cancer Society is a national network of employees and volunteers that implements research, and offers educational and patient service programs. Some of these programs include transportation to appointments, housing near treatment centers, equipment and supplies, support groups, and summer camps for children with cancer.

American Childhood Cancer Organization (ACCO)

P.O. Box 498
Kensington, MD 20895-0498

(855) 858-2226

www.acco.org

ACCO was founded by families to support families of children and adolescents with cancer. The organization helps shape policy, research, and programs on a national level. A quarterly newsletter and various informational handbooks are available online.

American Pediatric Surgical Association’s Complete Parent & Family Resource Center

(309) 733-7874

www.apsapedsurg.org

APSA is a surgical specialty organization composed of individuals who are dedicated to the care of pediatric surgical patients. Their website offers a range of online tools. These include a unique search engine to help visitors find a qualified pediatric surgeon and APSA member near you, as well as an up-to-date list of parenting resources and “cool” websites for kids.

American Society of Pediatric Hematology/Oncology (ASPH/O)

(847) 375-4716

www.aspho.org

ASPHO is a society of professional pediatric hematologists/oncologists who study and treat childhood cancer and blood diseases. It is currently the only society solely dedicated to the professional development and interests of subspecialists in pediatric hematology/oncology. The website provides patients and their families with a source of current, peer-reviewed scientific and clinical information.

Ann’s Place

80 Saw Mill Road
Danbury, CT 06810

(203) 790-6568

www.annsplace.org

Ann’s Place provides counseling for individuals and families, as well as various support groups, wellness programs, peer support, and more.

Brady’s Smile

P.O. Box 320921
Fairfield, CT 06825

Brady’s Smile was created to promote, improve, protect, and sustain the health, emotional well-being, and social development of children in need, including children suffering from illness. Their focus is to help make life easier for children (and their families) who are in the intensive care units at children’s hospitals.

Pediatric Brain Tumor Foundation

(800) 253-6530

www.curethekids.org

Pediatric Brain Tumor Foundation promotes public education about brain tumors and related diseases. It provides grants for research and education, as well as financial assistance to patients and their families, with the hope of improving their quality of life. Also organizes patient support activities.

CancerCare, Inc.

(800) 813-4673

www.cancercare.org

CancerCare is a national nonprofit organization with the mission of providing free professional help to people with all cancers through counseling, education, information, and referral, as well as directing financial assistance.

CancerQuest

(404) 727-0308

www.cancerquest.org

CancerQuest provides reliable, current, and comprehensive information about the biology and treatment of cancer, in order to help empower the patient, survivors, students, healthcare workers, and caretakers.

Children’s Brain Tumor Foundation

(866) 228-4673

www.cbtf.org

This foundation provides a free resource guide for parents of children with brain or spinal cord tumors, support services for families and survivors of childhood brain tumors, a parent- to-parent network that pairs experienced parents with those of newly diagnosed children. It also offers co-sponsorship of conferences and seminars for families, survivors, and healthcare professionals.

Children’s Cancer Association

(503) 244-3141

www.joyrx.org

This website provides information on financial assistance, wish fulfillment, youth connections, and end-of-life support. The association also offers several award-winning programs to seriously ill children.

Childhood Cancer Guides

P.O. Box 31937
Bellingham, WA 98228

www.childhoodcancerguides.org

This organization develops, maintains, and shares portions of books that help families of children with cancer and survivors of childhood cancer. They are also involved in advocacy.

Childhood Leukemia Foundation (CLF)

(732) 920-8860

www.clf4kids.com

The Childhood Leukemia Foundation is a national nonprofit organization founded to “nurture the spirit within” children living with cancer. CLF works to foster a better quality of life for children with cancer by creating fun, joyful experiences, giving them a sense of normalcy despite their challenging circumstances.

Children’s Leukemia Research Association, Inc.

(516) 222-1944

www.childrensleukemia.org

This nonprofit organization is dedicated to raising funds to support efforts toward finding the causes of and cures for leukemia. CLRA provides financial aid for treatment, medications, and lab fees for leukemia patients, as well as public and professional education, and research grants to medical professionals.

Children’s Oncology Group

(626) 241-1500

www.childrensoncologygroup.org

Children’s Oncology Group is an NCI-supported clinical-trials-cooperative devoted exclusively to childhood and adolescent cancer research. Their website provides information about how to locate a treatment center offering clinical trials for children with cancer and information about the long-term effects of cancer treatment.

Colin’s Crew

(203) 494-7838

www.colins-crew.org

Colin’s Crew was originally formed to provide financial and emotional support to the family of a brave boy named Colin who was diagnosed with Acute Lymphoblastic Leukemia. As he continues to do well, Colin’s Crew works on fundraisers to assist families in the same situation.

Coping Magazine: Coping with Cancer

(615) 790-2400

www.copingmag.com

Coping Magazine is a bimonthly publication for people whose lives have been affected by cancer, aimed to help them cope during and after their illness.

Connecticut Brain Tumor Alliance

P.O. Box 370514
West Hartford, CT 06137

(860) 264-5776

www.ctbta.org

The Connecticut Brain Tumor Alliance is a non profit organization dedicated to offering support and compassion to those affected by brain tumors.

CureSearch

(800) 458-6223

www.curesearch.org

CureSearch unites the Children’s Oncology Group and the National Childhood Cancer Foundation through a shared mission to cure and prevent childhood and adolescent cancer. Their website has a disease-specific resource directory and a wealth of links for general information, insurance assistance, emotional support, and family programs. Visitors may also sign up for

Childhood Cancerline - a free monthly e-newsletter with information on new treatments and psychosocial support.

IACR Foundation

125 Old Litchfield Road
Washington Depot, CT 06794

www.iacrfoundation.org

Innovative Advanced Cancer Research Foundation is committed to supporting dedicated physicians and scientists achieve their goals of advancing cancer treatment through innovative groundbreaking research.

Leukemia & Lymphoma Society

(CT Chapter)

3 International Drive, Suite 200
Rye Brook, NY 10573

(203) 388-9160

www.lls.org

This organization funds research, sponsors national education programs for the public and the medical community, and publishes a large number of booklets on cancer-related topics. It also has an Information Resource Center, available by phone or online chat, which is staffed by social workers, nurses and health educators who provide current, accurate information. Financial assistance is also available to families through this organization.

National Cancer Institute (NCI)

(800) 422-6237

www.cancer.gov

NCI provides a nationwide telephone service for people with cancer, their families, friends, and the professionals who treat them. Live online assistance is also available through their website. NCI answers questions, sends out informational booklets on a variety of topics related to cancer, and coordinates research projects for cancer control.

National Children’s Cancer Society

(314) 241-1600

www.thenccs.org

The National Children’s Cancer Society is a nonprofit national organization that helps improve the quality of life for children with cancer and their families by providing financial aid and in-kind assistance, advocacy, support services, and education about childhood cancer and wellness. It also has an online community for parents, caregivers, and survivors of childhood cancer to connect and share with one another.

National Organization for Rare Disorders

55 Kenosia Avenue
Danbury, CT 06810

(203) 744-0100

www.rarediseases.org

This organization is a unique syndicate of voluntary health organizations dedicated to helping people with rare “orphan” diseases, and to assisting the organizations that serve them. It is committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service programs.

Neuroblastoma Children’s Cancer Society

(800) 532-5162

www.neuroblastomacancer.org

The Neuroblastoma Children’s Cancer Society is a group of volunteers whose lives have been affected by cancer. They advocate for children who suffer from neuroblastoma and are dedicated to serving as a support center for their families. The primary focus of the organization is to raise funds to assist local research in neuroblastoma cancer, and to raise national awareness to encourage additional research and funding until a cure can be found.

Starlight Children’s Foundation

www.starlight.org

The Starlight Children’s Foundation is dedicated to developing projects that help seriously ill children combat the medical and emotional challenges they face on a daily basis. They provide an online social network using Facebook, Twitter, etc., allowing teens with serious illness and their siblings to meet kids in similar situations. Visitors may also access a series of online animated stories that can help young people learn how to cope with the challenges cancer poses.

Team IMPACT

(617) 801-0248

www.goteamimpact.org

Team Impact improves the quality of life for children facing life-threatening and chronic illnesses through the power of team by matching these courageous kids with local college athletic teams. Team IMPACT children are drafted onto the team and become an official member of the team from Draft Day through to Graduation. The child joins the athletic team and the student athletes join the child’s support team.

Children’s Cancer Cause

(202) 552-7392

www.childrenscancercause.org

The Children’s Cause is dedicated to accelerating the discovery of and access to innovative, safe, and more effective treatments for childhood cancer through education and advocacy. The website provides information about FDA guidelines, NCI cancer policies, medical privacy issues, current clinical trials, and key resources.

Children’s Hospital of Philadelphia

Philadelphia, PA

(800) 879-2467

www.chop.edu

The Children’s Hospital of Philadelphia is a pediatric hospital and research facility staffed by internationally recognized pediatric oncologists and teams with expertise in every type of pediatric cancer. The hospital’s experts, who have experience treating both the most common and the most rare childhood cancers, work together to diagnose and treat patients using an evidence-based approach backed by the latest research advancements.

Connecticut Children’s Medical Center

Hartford, CT

(860) 545-9000

www.connecticutchildrens.org

Connecticut Children’s Medical Center provides medical care for children and families. Every inpatient child has a private room, and parents are encouraged to room-in at the medical center. Child Life specialists, on staff seven days of the week, work to make the hospital experience comprehensible and, therefore, less frightening for the children.

Dana-Farber Boston Children’s Hospital Cancer Care

Boston, MA

(617) 632-3000

www.danafarberbostonchildrens.org

For more than 50 years, Dana-Farber Boston Children’s Hospital has treated children with cancer in one of the following programs: Brain Tumor, Cancer Survivor Program, Histiocytosis, Hodgkin’s lymphoma, leukemia, non-Hodgkin’s lymphoma, or solid tumor program. The hospital’s Pediatric Stem Cell Transplantation Program is internationally recognized as a preeminent pediatric center for the transplantation of hematologic stem cells. The program remains at the forefront of medical transplantation research and technology.

Maria Fareri Children’s Hospital at Westchester Medical Center

Valhalla, NY

(914) 493-7000

www.worldclassmedicine.com

Highly trained oncologists and hematologists care for children and their families. These experienced children’s physicians offer specialized programs in bone marrow transplant and experimental chemotherapy, as well as the most advanced therapies for sickle cell diseases, thalassemia, and other hematological disorders. A special ambulatory infusion center at the Children’s Hospital has been designed to provide continuing specialized care when these patients are well enough to go home. There is also an in-house Ronald McDonald House with five family suites.

Memorial Sloan-Kettering Cancer Center

New York, NY

(212) 639-2000

www.mskcc.org

Sloan-Kettering has treated more children with cancer than any other institution in the world. Its unique multidisciplinary approach offers children with cancer and other blood disorders the opportunity for accurate diagnosis and the most effective treatment available. Their website is full of information on diseases, as well as FAQ links for parents and children.

New York-Presbyterian Morgan Stanley Children’s Hospital

New York, NY

(212) 305-5437

www.hyp.org/morganstanley

Building a reputation for more than a century as one of the nation’s premier children’s hospitals, Morgan Stanley Children’s Hospital is affiliated with the Department of Pediatrics at Columbia University College of Physicians and Surgeons, and is Manhattan’s only hospital dedicated solely to the care of children and one of the largest providers of children’s health services in the tri-state area. It is also a major international referral center, meeting the special needs of children from infancy through adolescence worldwide.

St. Jude Children’s Research Hospital

Memphis, TN

(901) 595-3300

www.stjude.org

St. Jude Children’s Research Hospital is one of the world’s premier research and treatment centers for catastrophic diseases in children, primarily cancers. All patients accepted for treatment at St. Jude must be referred by their physicians and are treated regardless of the family’s ability to pay.

Texas Children’s Cancer Center and Hematology Service

Houston, TX

(832) 824-1000

www.txch.org

Texas Children’s Cancer Center is renowned for its work in pediatric cancer and hematology disorders, and offers innovative therapies for all forms of childhood cancer and blood disorders.

The Johns Hopkins Children’s Center

Baltimore, MD

(410) 955-5000

www.hopkinschildrens.org

The Johns Hopkins Children’s Center offers one of the most comprehensive pediatric medical programs in the country.

The Children’s Cancer Hospital

The University of Texas
M.D. Anderson Cancer Center
Houston, TX

(713) 792-2121

www.mdanderson.org/children

Cutting-edge research and treatments at M.D. Anderson has helped thousands of

children survive cancer with the best possible outcomes and quality of life. It is one of three- dozen nationally designated comprehensive cancer facilities.

Yale-New Haven Children’s Hospital Smilow Cancer Hospital

New Haven, CT

(203) 688-4242

www.ynhh.org

The Pediatric Oncology Program at Smilow Cancer Hospital offers the latest advances in diagnosing and treating childhood cancer and blood disorders. The Pediatric Oncology Program is supported by a multidisciplinary team of physicians in pediatrics, laboratory medicine, surgery, neurosurgery, orthopedics, pathology, therapeutic radiology, and diagnostic radiology, as well as nurses and social workers.

Many supportive care services are available, including Child Life, clown visitation, music therapy, and massage therapy to help children and families cope with illness and treatment. The HEROS Clinic also offers children, adolescents, and adults a survivor clinic focused on wellness issues after treatment for childhood cancer.

There are specific needs and challenges for this type of care. These sites can educate you in the aspects of bone marrow and stem cell care treatments.

Be The Match

www.bethematch.org

Be The Match is a global leader in bone marrow transplantation. They conduct research to improve transplant outcomes, provide support and resources for patients, and partner with a global network. They also have good resources for helping you to prepare for your child’s transplant.

BMT InfoNet (Blood & Marrow Transplant Information Network)

1548 Old Skokie Road, Suite 1
Highland Park, IL 60035

(847) 433-3313

www.bmtinfonet.org

Since 1990, BMT InfoNet has provided support to more than 100,000 transplant patients and their loved ones. Its services include a searchable Transplant Center database, a resource directory, a drug database, book recommendations, a patient support network, help with insurance difficulties, and a quarterly newsletter.

Bone Marrow Foundation

New York, NY

(212) 838-3029

www.bonemarrow.org

This organization provides financial assistance, education and support to those facing bone marrow transplants. Assistance is not limited to a specific disease, type of transplant, or age range.

Delete Blood Cancer

New York, NY

(212) 209-6700

www.dkms.org

DKMS, founded in 1990, is an international not for profit organization dedicated to the fight against blood cancer and blood disorders by: creating awareness; recruiting bone marrow donors to provide a second chance at life; raising funds to match donor registration costs; supporting the improvement of therapies through research; and supporting patients from day one of their diagnoses.

Gift of Life

www.giftoflife.org

Gift of Life provides patients awaiting stem cell or bone marrow transplantation with informational resources and videos about transplantation. This organization also provides information on finding a match for your child’s cell type and can work to match your child with an appropriate donor from their registry.

Help Hope Live (Formerly NTAF)

(800) 642-8399

www.helphopelive.org

This fund provides assistance for fundraising activities, answers financial questions and concerns, and offers donor awareness material for transplant and catastrophic injury patients nationwide.

Kashi Clinical Laboratories Inc.

Portland, OR

(877) 879-1815

www.bonemarrowtest.com

This website provides testing resources for patients who need stem cells from bone marrow, peripheral blood or umbilical cord blood. It is also focused on helping families, friends, communities and organizations find suitable donors to complete a stem cell transplant.

National Bone Marrow Transplant Link

(800) 546-5268

www.nbmtlink.org

The National Bone Marrow Transplant Link provides a hotline, peer support groups, a library of educational booklets, and suggestions for financial assistance.

National Marrow Donor Program

500 North 5th Street
Minneapolis, MN 55401

(888) 999-6743

www.bethematch.org

The National Marrow Donor Program has the world’s largest computerized listing of potential bone marrow donors and offers cooperative search arrangements with many other registries worldwide.

Yale New Haven Children’s Hospital

The pediatric blood and marrow transplantation program offers bone marrow, peripheral blood stem cell and cord blood transplants. Children are cared for by a highly trained and knowledgeable medical team that understands the application of research - based therapies and the care needed for pediatric patients undergoing transplantation.

What works for some may not work for others. It is important to find out what works for you and your situation. Others have found that some of the practices in this section have been able to help them through this period of illness. Here is where you may want to discuss some of these things with a buddy you have met in a support group - and you should always check with your doctor before beginning any alternative therapy.

Acupuncture

Acupuncture is a traditional Chinese medicine that is used to relieve pain and other symptoms while generally improving the quality of life. It is often used to relieve vomiting and nausea from chemotherapy. It is administered using needles, heat, pressure, and other treatments to the skin at points known as acupuncture points. This practice is meant to simulate energy flow or “chi,” which is believed to circulate through the body along specific routes.

Yale New Haven Hospital has a practitioner who administers acupuncture care.

Reiki

Reiki is a Japanese healing technique based on the principle that the therapist can channel energy into the patient by means of touch to activate the natural healing processes of the patient’s body and restore physical and emotional well-being.

American Institute for Cancer Research

Washington, DC

(800) 843-8114

www.aicr.org

This institute provides information in the field of diet, physical activity, and weight management as it relates to cancer.

Baktulyfe Body Therapies

Yale New Haven Children’s Hospital

(203) 915-0128

http://baktulyfe.massagetherapy.com/home

Licensed massage therapist Karen Dawson provides services at Yale New Haven Children’s Hospital.

Integrative Medicine at Yale University

New Haven, CT

www.medicine.yale.edu/integrativemedicine

Designed to provide a sustainable, central forum at Yale for interdisciplinary, inter-institutional, and international collaboration, research and education in complementary, alternative and integrative medicine.

Kula for Karma

Kula for Karma offers therapeutic yoga programs, through a dedicated network of specially trained volunteer instructors, at no cost to people with physical, mental and emotional challenges. We work with the medical community to complement traditional approaches to healing those with illness, disease and chronic pain, and those recovering from abuse, trauma and addiction.

National Center for Complementary and Integrative Health

Bethesda, MD

(888) 644-6226

www.nccih.nih.gov

The National Center for Complementary and Integrative Health is dedicated to exploring complementary and alternative healing practices, training complementary and alternative medicine researchers, and spreading information to the public and professionals. Their website offers live help with a health information specialist.

Oncolink

www.oncolink.org

This resource provides information and video segments on specific complementary and alternative therapies, how to discuss the topic with your doctor, and how to choose a reliable provider.

Quackwatch

www.quackwatch.com

This resource provides information on claims of complementary and alternative therapies proven to be unsafe, or the effectiveness of which has not been proven. The organization is now an international network of people who are concerned about health-related frauds, myths, fads, follies, and misconduct. The website provides valuable information that is otherwise difficult to find.

Books

The following publications can be found at libraries, bookstores, or online. Most of these publications are available new or used at amazon.com, barnesandnoble.com, or chapter.indigo.ca. Kindle and mobile downloads may be available.

I’m Still Me, INSIDE and OUT

Please contact Circle of Care to receive your copy of I’m Still Me

A story of hope and determination in the face of cancer; I’m Still Me is written for children and families and encourages them to accept who they are and the things they love to do, despite all the changes in their world.

The Hare Who Lost Her Hair

www.amazon.com/Hare-Who-Lost-Her-Hair/dp/1489590056

This story is a message of hope for young children and families undergoing chemotherapy. This kid-friendly tale follows a brave hare on her journey to overcome illness. Contains an overall message of survival.

Henry the Brave & The Cancerasaurus

www.etsy.com/listing/1132050334/childhood-cancer-book-gift-for-child

This children’s book about bravery, hope, and love follows Henry’s journey to defeat his Cancerasaurus and teaches Henry’s “magic saying,” of “I am strong, I am tough. I am armed with love!”

A Little SPOT of Courage

www.amazon.com/Little-SPOT-Courage-Story-About/dp/195128724X

Courage isn’t only for superheroes! All of us can do small and big acts of courage every day. A little SPOT of Courage will show you some ways you can grow your own courage spot! (Ages 5-7)

Stevie’s New Blood

www.amazon.com/Stevies-Blood-Kathryn-Ulberg-Lilleby/dp/1890504173

Stevie is undergoing a bone marrow transplant in the hopes that it will cure his leukemia. Anna, his sister and donor, will learn what it is like to give her bone marrow. The story explains bone marrow and stem cell transplantation from a child’s perspective. (Ages 8-12)

They Call Me Brave: A Children’s Book About Cancer

www.amazon.com/They-Call-Me-Brave-childrens/dp/0578964341

They Call Me Brave follows the true story of seven-year-old Ava and her journey fighting cancer… she may be sick but she is still unstoppable! This book empowers children and their families to keep moving forward. (Ages 2-8)

What Happens When a Kid Has Cancer

www.amazon.com/What-Happens-When-Kid-Cancer/dp/1736611461

Join Mia and her stuffed giraffe Stuart as they explain the science of cancer and how a child’s diagnosis and treatment affect their day-to-day life.

When a Kid Like Me Fights Cancer

www.amazon.com/When-Kid-Like-Fights-Cancer/dp/080756396X

Learn with Ben as he discovers that many things change with cancer… but the most important things stay the same! And everyone around him wants to help him fight. (Ages 2-5)

Hundred Percent Chance: A Memoir

www.amazon.com/Hundred-Percent-Chance-Robert-Brown-ebook/dp/B07MM13Z1H

Hundred Percent Chance is an authentic, page-turning memoir of Robert Brown’s journey with cancer. This book touches on all of the emotions involved in facing cancer from fear and frustration to determination and elation.

I’d Rather Do Chemo Than Clean Out the Garage: Choosing Laughter Over Tears

www.amazon.com/Rather-Chemo-Than-Clean-Garage/dp/0971326525

Pearls of wisdom balance hilarious fun in this shameless exploitation of the chemo lifestyle. Fran Di Giacomo shares the game plan she has used for survival, quality of life, and to maintain her career as a professional artist. Growing impatient with the usual sob stories of cancer, Fran decided that we don’t need tears… we need laughter!

Living With Cancer: A Teen Perspective…

A collection of essays from the Gilda’s Club NYC Essay Contest

www.amazon.com/Living-Cancer-Perspective-Collection-Contest/dp/1508700184

The Gilda’s Club NYC Essay Contest challenged teens with cancer to write about

Oliver’s Story: For “Sibs” of Kids with Cancer

www.amazon.com/Oliver%60s-Story-%60Sibs%60-Kids-Cancer/dp/097240435X

This story is written through the eyes of six-year-old Oliver. It focuses on the many questions siblings have when their brother or sister is diagnosed with cancer, and offers constructive ways on how they can provide support. (Ages 4-10)

What About Me? When Brothers or Sisters Get Sick

www.amazon.com/What-about-Me-Brothers-Sisters/dp/0945354495

Magination Press, 1992

ISBN 0945354495

Finding out a brother or sister has cancer is very difficult. This booklet describes how other teens dealt with this tough time. It shows ways teens can help themselves and their families, provides information about cancer treatments, ways to learn how to cope, as well as where to go for more support. (Ages 4-8)

Betty Crocker’s Living with Cancer Cookbook

www.amazon.com/Crockers-Cookbook-Recipes-Through-Treatment/dp/B007YWEIXC

This well-organized cook book offers tips and recipes for overall nutrition and combating the many side effects of cancer treatment - including sections for nausea, loss of appetite, mouth sores, and more.

Eating Hints for Cancer Treatment: Before, During, and After

www.cancer.gov/publications/patient-education/eating-hints

This booklet is designed for patients, families, and caregivers. It addresses specific dietary needs during treatment and attempts to provide coping strategies for side effects that may have an impact on eating. Free copies are available through the link above.

The Cancer Survival Cookbook…

www.amazon.com/Cancer-Survival-Cookbook-Recipes-Helpful/dp/0471353833

This book has recipes for patients going through chemotherapy and radiation treatments. The recipes are excellent and easy. The nutritional information for each recipe is given, as well as hints on how to increase your calorie intake when needed.

I-Can’t-Chew Cookbook…

www.amazon.com/I-Cant-Chew-Cookbook-Delicious-Swallowing-Disorders/dp/0897934008

This cookbook is designed for people who love and enjoy food but suffer from chewing, swallowing, or dry-mouth disorders - the recipes featured in this book can be useful for children suffering from mouth sores or severe fatigue.

I Can Survive

For the Survivor in Each of Us!

The poetry, optimism, and humor in this award-winning book will encourage cancer patients young and old and their families to find and cherish the small moments and be inspired to express love and support.

My Cancer Days

This picture book blends vibrant watercolors with a touching story to show the emotional ups and downs of a little girl going through cancer treatment. This realistic but hopeful look at a child’s experience with cancer can help children express themselves, and it can help the adults in their lives offer the support they need.

The Survivorship Net

A Parable for the Family, Friends, and Caregivers of People With Cancer

The author of this beautifully illustrated book uses the parable of circus life to underscore the importance of family, friends, and caregivers in the life of every cancer patient. At once a children’s book and a book for “children of all ages,” it delivers a powerful and inspiring message to one and all.

Videos

Kids Just Like You - What is Cancer?

www.youtube.com/watch?v=hiFffY9Znhc

This is a short video for kids depicting other children with cancer enjoying their favorite activities and explaining what cancer is from their own perspectives.

A Boy Named Finn

www.youtube.com/watch?v=Lw3vHPHox7U

Finn is a puppet who explains how got through his cancer treatment, with the help of his doctors, nurses, and family members. Perfect for kids wondering what to expect from their first hospital stay.

Sometimes a picture is worth a thousand words. The videos suggested here were picked by a former cancer patient in order to provide answers to questions like “How do I do my makeup now?” and, “What do I bring to treatment?”

Full Makeup Tutorial for Chemo Patients

www.youtube.com/watch?v=OAFDrf0Hi4k

This video may be helpful for teens and young adults who are wondering how to apply makeup after hair loss. It’s a step-by-step tutorial on how a fellow cancer patient does her own makeup, in an attempt to help others regain confidence in her appearance as well.

What’s in my Chemo Bag?

www.youtube.com/watch?v=LQeIhgxKULs

You may be wondering what to pack in terms of your own comfort items to bring to the hospital or treatment center. This video gives helpful tips on what you may want to take with you.

Morgan Hamelin’s Channel

www.youtube.com/MorganHamelin

This YouTube channel is run by a young teenage girl recovering from cancer treatment. She entertains her subscribers with popular video blog topics. Her videos can help establish a sense of normalcy in the lives of those enduring treatment.

About The Purple Pages

The information in this book contains online and in-person resources for parents and families of children with cancer. Each resource has been checked for accuracy at the time of publishing. Resources are periodically updated by our staff - if you find any of the information in the Purple Pages to be incomplete, inaccurate, or out of date, please let us know by emailing info@thecircleofcare.org.

Before making any changes to your routine and/or medical care, always seek the advice of your child’s doctor.

Published by Circle of Care for families of children with cancer, inc.

Written and edited by: Liz Salguero and Heather Stabinsky

Cover Design: Jeff Salguero

Copyright 2022 Circle of Care for Cancer Families, Inc.

The Purple Pages, a childhood cancer resource for families.

Circle of Care for families of children with cancer, inc. is a non-profit 501c(3) organization founded by a group of families whose children have battled and survived cancer. We are dedicated to supporting children with cancer and their families from the time of diagnosis, throughout treatment, and beyond.

Because we know kids need more than medicine to heal, we are here.