Giving Back: Spotlight on Sara’s Smiles Foundation

Last spring I had the opportunity to meet Jen Burke, the founder of Sara’s Smiles Foundation at the CLC Conference. She was full of positive energy and compassion to help children fighting and surviving cancer.

 

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Sara’s Smiles Foundation, a designated 501(c)(3) organization, was created by the family of 5 year-old Sara Burke to carry on her memory, spirit, and legacy of hope, determination, and cheer. Sara was a vibrant, energetic, little girl who loved arts and crafts, mac and cheese, music, her Big Wheel, and her big brother and big sister.

Upon being diagnosed with a malignant brain tumor, Sara and her mother lived at the Children’s Hospital of Philadelphia for seven months. During that time, Sara underwent multiple surgeries, chemotherapy treatments, stem cell transplants, and therapies of all sorts. Despite her difficult, adverse circumstances Sara battled her disease with fierce determination and an unwavering positive attitude, living every moment to the fullest. Although physically isolated, she was able to harness the power of love from her family, friends, and community. This energy filled her heart, brightened her outlook, and strengthened her resolve to fight.

Tragically, on May 12, 2008, Sara lost her courageous battle with cancer. The many, many happy memories that Sara experienced in the hospital are the primary inspiration behind Sara’s Smiles. Our mission is to extend a loving hand in helping to create a warmer, more personal, more empowered experience for children who are struggling with cancer by providing a variety of resources to entertain, comfort, and educate. The three major facets of Sara’s Smiles are our website, Inspiration Kits, and Inspiration Stations. All three are designed to encourage a more positive experience for children and their families.

Our Website:

Our website, www.saras-smiles.org, is designed for both the child diagnosed with cancer as well as his/her family and friends. The website provides information about our Inspiration Kits, Inspiration Stations, and many valuable resources. A comprehensive, user-friendly list of organizations that support and advocate for kids with cancer as well as websites and apps for games, arts and crafts, stress management, and pain relief are also featured on our site.

Our Inspiration Kits:
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Sara’s Smiles Inspiration Kits help cultivate a more positive environment and frame of mind for children who are fighting and surviving cancer. Each Inspiration Kit is designed to be durable, portable, practical, and fun. Our kits contain a sampling of the resources found on our website- items that can help families stay organized, connect with others, and explore creative ways to encourage smiles. Whether in the hospital or at home, we believe that engaging children not only brightens their spirits, but empowers them as well. Sara’s Smiles donates Inspiration Kits to pediatric cancer patients in the many hospitals with whom we are partnered and also upon request free of charge. Kits can be ordered by phone or our website.

Our Inspiration Stations:

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Sara’s Smiles Inspiration Stations are where clouds are lifted and joy is inspired via the creation of bright, beautiful, Inspiration Cards. Inspiration Stations are easy to set up and can be hosted by anyone, anywhere such as at schools, parties, shopping centers, etc. Volunteers hosting Inspiration Stations encourage people to share colorful, uplifting, and positive words, phrases, quotes, and pictures on cloud-shaped Inspiration Cards. The cards, crammed with positive “graffiti,” offer an extra measure of love and support to the patients and families who receive them. The Inspiration Cards can also be used to add a spot of color to the walls of a child’s room. They act as a constant reminder of the strength that lies within each child and the unbroken, loving connection to a community that cares about them. Inspiration Cards are included in our kits. They can also be delivered as a surprise package of love and cheer to a child diagnosed with cancer by family and/or friends. More information on how to host an Inspiration Station or to request the delivery of Inspiration Cards can be found on our website, www.saras-smiles.org.

Click here to learn more about Sara’s Smiles Foundation and how you can get involved or make a donation. Be sure to follow their page on Facebook too.

One Mother’s Journey Through Grief is Bringing Hope to Others. Spotlight and Giveaway from Comfy Cozy’s for Chemo

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September is Childhood Cancer Awareness Month and it’s the perfect time to share a story of one amazing mom, Lorraine Tallman and her passion to help others through ComfyCozy’s for Chemo.

Lorraine lost her 13-year-old daughter, Amanda, after a 4 year battle with cancer. Amanda hated that she had to constantly lift her shirt for the doctors, interns and nurses to tend to the chemotherapy port in her chest. Before she passed away she helped design a fun tie-dyed shirt that would provide children with modesty, dignity and comfort, while still allowing access to their port. The Comfycozy for Chemo was born.

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The shirts have angled zippers or buttons that allow the front to flap open and provide access to the port. There is an inside pocket for the port, when not in use, so it doesn’t scratch and irritate a patients skin and slits with snaps to manage all the lines coming out of the port.  The shirts come in size 6 months to Adult 2XL and come in a variety of tie-dyed patterns. There are short and long sleeved shirts, hoodies, dresses and onesies.

Amanda charged her mother with getting the shirts, free of cost, to all pediatric cancer patients.  Lorraine has raised enough money over the past 3 years to give away almost 4,000 shirts! Lorraine is engrained in the community of Phoenix  Children’s Hospital and teaches a class there for doctors and nurses called Dignity for the Journey.  She also sits on the hospital’s Family Advocacy Council .  We are delighted that ProMedica shares Amanda’s dream of keeping children comfortable and providing them dignity in the harsh world of childhood cancer.

ComfyCozy’s are shipped to any patient that does not already have one, connect with us via Facebook or online at Comfycozys.com to receive one. If you would like to sponsor a child or make a donation, click here. If you are interested in volunteering or being added to our mailing list, email Jessie Swygert at J.Swygert@ahras.org.

Be sure to check out Amanda Hope Rainbow Angels and follow us on Facebook, Twitter and Instagram.

ComfyCozyzGiveaway
We will be giving away one tie-dyed logo t-shirt to a lucky winner!
Choose one or more ways to enter:

1. Sign up for email notifications at ChildLifeMommy.com and leave a comment below.

2. Facebook: Follow Child Life Mommy, leave a comment and tag a friend on the post.

3. Facebook: Follow ComfyCozy’s for Chemo, leave a comment about the #ChildLifeGiveaway.

4. Twitter: Follow, Like and RT the post to @ChildLifeMommy and @ComfyCozy4Chemo

5. Instagram: Follow @ChildLifeMommy and @ComfyCozy4Chemo, Like and Tag a friend in the post.

Good Luck! Winner will be chosen 9/10/15

One Family’s Fight Against Childhood Cancer

Every three minutes a child is diagnosed with cancer. The devastation of the news can cripple a family as they are faced with the challenges ahead. They will have to alter their normalcy to routines of tests, tears, chemo, surgeries, advocacy, medication, child life, hospitalization, resiliency, and build friendships with medical team members, patients and families.

One mother is standing up against Neuroblastoma and providing a guide book to the caregivers affected by the diagnosis.

Front cover

About the Book

When Nathan was first diagnosed with neuroblastoma in 2006, our family entered a world we knew nothing about. The world of childhood cancer is terrifying and complicated. We had a lot to learn and quickly. We had to learn about treatments, scans, blood draws, labs, medicines, and side effects, including how to handle them. We looked for help from other parents and Nathan’s medical staff. One thing that would have helped was a guide that we could have read and made notes in as we traveled this path. A guide to all those things other families have already learned. Something we could have carried around with us that would help us make sense of this new vocabulary and the things we needed to know. This book is for just that purpose. It is intended to help navigate some of the things you will find during your child’s treatment and recovery from cancer. It is not intended to be inclusive or to replace the doctors; it is intended to share experiences and knowledge, parent to parent. This book contains what my family has learned from the medical staffs we have worked with, other parents, and the kids we have been privileged to meet on our journey.

The book is organized into sections by topic so the reader can flip to whichever section is needed.

  • “Cancer 101” is a short course on cancer treatments and scans. It has a lot of the technical information with a bit of personal experience.
  • “Bone Marrow Transplant” describes the unique things that are associated with a bone marrow transplant (BMT). BMT is such an extensive and unique treatment it gets is own section.
  • “How to Manage Cancer 101” is our families experiences. It has all those things we have learned during our journey. Topics include assigning blame, keeping family and friends informed, loving on the other family members, accepting help, defining primary and alternate care givers, and relating those funny hospital humor stories.
  • “Types of Medicine” is about the many types of treatments and medicines available. This section talks about things like clinical trials, FDA approved drugs, supplements, and researching new medicine or treatment options.
  • “Long Term Side Effects” is about the late effects that Nathan has experienced and how we have addressed them. Topics include hearing loss, learning issues, physical therapy, pain and a general attitude of being a cancer survivor.
  • “Wish Trip” describes the trip Nathan was given by the Special Wish Foundation. This section describes our trip so that when the time comes for your “Wish” from your local “Wish” foundation you can have an example of what one is like.
  • “Organization and Resources” is a short list of those groups that helped us. Links are included on this website to each of these resources.
  • Finally, there is a glossary of terms and acronyms that is used in the book. An inclusive list of all those new words that you hear in the hospital would be a book of its own.

Where to Get a Copy

The book is available on Amazon and also through their website Dancingintherainnb.com. They have teamed up with a Christian Ministry called MJ Ministries to help raise funds and provide books for free. You can request an English or Spanish copy here or make a donation to help continue this free service for families.

This is an amazing book that provided me with additional insight to working with children and families affected by an illness. I would strongly recommend it to families facing neuroblastoma and medical professionals working in the field.