Category Archives: General

Mady’s NEGU Room Makeover!

Mady’s NEGU Room Makeover

Each year, nearly 14,000 children between the ages of birth and 19 receive a cancer diagnosis. At the Jessie Rees Foundation, supporting kids as they fight this disease is our number one priority. One way we try to support these kids is by providing them with room makeovers. By giving them a retreat where they can go and relax, we hope to remind these kids to Never Ever Give Up in the fight against cancer.

Most recently, this past March, we worked with a young girl named Mady. Mady is seven years old, and battling cancer. She lives in San Juan Capistrano with her family, and shares a room with her brother, Jayden.

Before beginning the makeover, the NEGU design team met with the family to learn more about Mady, her interests, and what she would like in her bedroom. After their meeting, designers Lori and Stacey came up with the design plan to create Mady’s special retreat, making sure to incorporate some of her brother’s style into the room, as well.

During the two days it took to design and makeover the room, NEGU sent Mady and her family on an exciting trip to Sea World!

Included in the makeover were new paint, bedding, cabinets and some furniture, and the addition of closet doors, along with, of course, lots of fun NEGU accessories. They even added a beautiful full-length mirror so Mady could put on her makeup!

Lori and Stacey worked with Hensel Phelps on the construction, painting and installation or the room.

We are so excited to have the opportunity to work with kids like Mady, and we love using room makeovers to bring joy and excitement into their lives. We hope that this is one more way that the Jessie Rees Foundation can encourage these brave kids to Never Ever Give Up.

For more information, please email Jana, our Family Resource Coordinator at jana@jessie.org.

Compassionate Volunteer Becky!

Compassionate Volunteer Becky!

We are honored to recognize Becky, the hand and the heart behind the amazing portrait sketches that are sent to courageous kids and their families!!

Compassionate Volunteer Becky

 

With the stroke of her pencil, Becky Steward can turn a photograph into a priceless memory for families of courageous kids. Having heard Jessie’s story through a friend, she immediately began donating her artistic talents and has now created over 60 personalized pencil sketches to encourage children and families during their time of need. In Becky’s eyes, she’s “the one being blessed through these precious children.”

We are so thankful for the countless hours of service and sacrifices that Becky has given to help encourage kids fighting cancer to NEGU! Thank you, Becky, for your incredible ‘heart work”!

 

Compassionate Volunteer Alex

Compassionate Volunteer Alex!

AlexWe met Alex at the area code games this past year, and since then Alex has brought Jessie’s NEGU message to his hometown and to his school, working passionately to educate others about childhood cancers and to share Jessie’s story. What could be a better way to hear about Alex’s amazing journey as a compassionate volunteer, than from his own words! Here is Alex’s story:

“On a hot summer day, perhaps one of the most important in my “baseball life”, I found myself in
southern California ready to perform in front of hundreds of scouts. I knew the day was going to be
intense and that peppered in would be some activities the Area Code events coordinator had set up for us the help pass the time. Little did I know that that day my perspective on life would be changed forever.

I was told that the Jessie Rees Foundation would be in attendance this day and that I would be partnered with a kid who was battling cancer. At first, I thought, “Ok, this will be fun. I’ll get to meet a cool kid, maybe sign a ball, and put a smile on his or her little face”. Boy, was I in for a shocker! The experience I had with my new friend Bodey was so much more than just another day at the ball park. I took away a new appreciation for life and for courage and for perseverance. Not only was Bodey smiling and participating in all of the day’s activities, but every single kid out there was doing the same. As I looked across the sea of young faces, it was hard to tell that any of them were fighting the fight of their life.

This image was, to me, the epitome of the phrase, “Never Ever Give Up. I distinctly remember
thinking to myself, if these kids can do it, then any of us can. We can… and we should… without excuse, and without complaint as we have every opportunity still ahead of us. The perseverence these kids displayed to keep going even in the face of cancer is indelible and one I will never forget. It got me motivated and without thought I found myself sharing the story of my day on that field in sunny Southern California with anyone who would listen.

The week after my return home, I went up to my high school where my Activities Directory, Debbie Katzfey, was working prior to the student’s arrival. As I had already done several times before, I had a captive audience and shared my experience with her. I showed Ms. Katzfey some video of our day on the ball field and some clips from the NEGU organization. I showed her Jessie’s story… we sat… and we cried. What inspired me most about this foundation is that it was started by young Jessie who was going through so much herself, yet all she cared about was helping others. Mrs. Katzfey was “in” too. Thank goodness for her commitment and energy; I brought her the ball and she helped me get it rolling.

I knew I wanted to make a difference in my home town too. I want to be a part of bringing joy to kids who are battling cancer everywhere I go. I myself, at a relatively young age, lost a good friend, Ally Ross, to a childhood brain cancer. I saw the fight, and I saw the pain… I wanted to make a difference. With Mrs. Katzfey’s help, we were put in touch with Lexi. Lexi is a beautiful young girl who was in the fight of her life. We wanted to put a smile on her face and bring her some joy. We invited Lexi to Lee’s Summit West for our Homecoming day. It started with an all-school assembly where Lexi was crowned Homecoming princess, it went on to the parade where Lexi was propped high up on the float as it made its way through downtown Lee’s Summit, and culminated in the evening football game where Lexi was brought on to the field and honored during the half-time ceremony. There was only one dry eye in the capacity-filled stadium… and that belonged to
Lexi. She stood at the middle of the field with a crown on her head, a wave of her hand and a beautiful smile painted across her face. That was the beginning for me. I knew I had made a difference.

But truth be told, I got so much more out of the experience that I ever imagined possible. It feels good to help make others feel good, so I couldn’t stop there. Again, with Mrs. Katzfey’s help, we have been able to organize special presentations for kids fighting cancer in our area through several school activities.

With the help of Kaitlin Sandeno, we’ve kept the momentum going through our Dig for the Cure
volleyball Cancer fundraiser game, Superman Sam Swim meet, and a visit to Children’s Mercy Hospital to deliver joy jars. I’ve been bit! After hearing the generosity and compassion in Jesse’s story, witnessing the pain of Ally’s story, championing the remission of Lexi’s story, and cheering the fight of Superman Sam, I am only fueled. Though it seems insignificant, I can only say “Thank you to the Rees family and their foundation… for giving me a platform and opportunity to help bring a little bit of joy to others who need it most”.

Compassionate Volunteer Scarlett!

Compassionate Volunteer Scarlett!

 

It’s volunteer week, and we are all about honoring and recognizing those who go over and beyond the call of duty to help encourage courageous kids to Never Ever Give Up.

Scarlett

 

This week, we would love to introduce our fans to Scarlett Czarnecki, one of our compassionate volunteers who was recognized at our NEGU Gala!

As a pediatric oncology nurse for over 14 years, Scarlett  has worked on both the front lines and research side of childhood cancer. Currently in her third year as President of SCAPHON, she plays a critical role in helping Jessie Rees Foundation build stronger relationships through the intricate hospital networks. Thanks to Scarlett’s efforts, NEGU continues to partner with and “love on nurses,” so they are empowered to encourage our children.

Thank you, Scarlett, for all that you do to help support children fighting cancer around the world!

Go Bald or Go Home! Go Bald for St. Baldrick’s!

Go Bald or Go Home! 3rd Annual “Go Bald” Event to Benefit St. Baldrick’s

Team Go Bald or Go HomeAre you looking for a new hair cut that represents bravery and courageous?

Join Team Go Bald or Go Home THIS SUNDAY, March 30th, at the Harp Inn in Costa Mesa for their 3rd annual “shave your head” event, all benefitting the St. Baldrick’s Foundation, a childhood cancer research charity!

This will be an amazing, family-friendly event and an opportunity to show your support for courageous kids by standing next to them in their fight with cancer. All proceeds from the event will go to support the cutting edge research programs supported by St. Baldrick’s!

To-date, Team Go Bald or Go Home has raised close to $100,000 over the past 3 years, and this year alone they have raised over $35,000!!!! More than 35 Orange County residents will be shaving at the event, 15 of which are kids!!!! How amazing is that!

With just a few days until the event, Team Go Bald or Go Home is pushing hard for more participants, more support and more awareness for childhood cancer. What’s their motto to keep pushing for more??? “Because you never know what dollar will be that dollar that finds a cure”

Whether you are shaving in honor of a courageous fighter, a friend who is fighting cancer, so just to show your support..come out and support this amazing group, amazing charity and critical cause!

Thank you, Team Go Bald or Go Home, for all that you do to support kids fighting cancer. We NEGU for you! To Join this shave event, visit their fundraising page at the St. Baldrick’s Foundation

Students Sell NEGU Grams to Support Kids Fighting Cancer

Going GoldWe are always so inspired by the compassionate character and commitment to service displayed by kids.

This past month, the student council members at Kennedy Elementary School rallied around one of their own friends who was fighting cancer. Selling bracelets and collection donations, the kids at Kennedy Elementary raised over $1500 for their friend’s family

Knowing that their were many more kids their age who needed support and encouragement, the 5th and 6th graders, were eager to start another fundraiser to support others. In February, the group decided to sell Valentine Grams on campus as a way to fundraise.  In 2013, the students raised over $160.

This year, the kids were eager to make it bigger and better. They displayed NEGU posters around the school and sent notices home to the entire student body, informing them about childhood cancers and how they can support their fundraising efforts. Again, selling NEGU grams for Valentines day, the kids sold out daily…and even had to take orders!

This year the students raised $622 to support kids fighting cancer! The kids were so proud to be part of something so special and to have had the opportunity to provide JoyJars to 30 kids!

A big thank you to Ms. Robyn Ashby, 5th Grade Teacher Kennedy Elementary School and the entire student body! We NEGU for you!

 

Progress and Challenges in Fighting Childhood Cancer

Progress and Challenges in Fighting Childhood Cancer
(article from the American Cancer Society)

ATLANTA – Jan. 31, 2014–A new report from the American Cancer Society outlines progress made and –more importantly—challenges that remain in fighting childhood cancer. The report estimates the number of new cancer cases and deaths for children and adolescents in the United States, summarizes the most recent and comprehensive data on cancer incidence, mortality, and survival, and outlines what is known and where answers are still needed for childhood cancers. It appears in CA: A Cancer Journal for Clinicians and also as a Special Section in Cancer Facts & Figures 2014. The American Cancer Society created the report to inform clinicians and the public about progress and challenges in preventing and averting suffering and death from the cancers that affect children and adolescents.

The report calls the diagnosis of cancer in children and adolescents “a life-altering event for [children and adolescents] as well as their families.” It points out that although advances in the treatment of childhood cancer have saved many lives over recent decades, there has been less progress made in understanding the causes and prevention of childhood and adolescent cancers. And while there have been substantial improvements in survival for many cancers of childhood, others have seen little progress. For example, progress against central nervous system (CNS) cancers has been significant overall, but for some subtypes, survival times remain tragically low. For diffuse intrinsic pontine glioma (DIPG), the median survival time after diagnosis remains less than one year.

The report says in 2014, an estimated 15,780 new cases of cancer will be diagnosed and 1960 deaths will occur among children and adolescents aged birth to 19 years. Annual incidence of cancer from birth to age 19 is 18.8 per 100,000; approximately 1 in 285 children will be diagnosed with cancer before age 20. Today, about 1 in 530 young adults between the ages of 20 and 39 is a childhood cancer survivor.

Among the issues the report outlines that need to be addressed: while advances in survival for many types of malignancies have resulted from advances in surgical techniques, delivery of radiation therapy, and use of chemotherapy, children treated for many cancers have a high risk of long-term health issues. For example, children treated for brain tumors, a leading cancer in children, may experience seizures, weakness in the arms and legs, blindness, hearing loss, neuroendocrine effects, including growth hormone deficiency, hypothyroidism, abnormal timing of menarche, and neurocognitive deficits. Other cancers and their treatments also have serious long-term effects.

In addition, unlike adult cancers, only a relatively small percentage of all childhood cancers have known preventable causes. Also, early detection of cancer in children is made much more difficult because of the similarity of some symptoms to those of more common childhood diseases. Some symptoms of childhood cancer that should alert parents and health care providers include an unusual mass or swelling; unexplained pallor or loss of energy; a sudden tendency to bruise; a persistent, localized pain or limping; a prolonged, unexplained fever or illness; frequent headaches, often with vomiting; sudden changes in vision; and excessive, rapid weight loss.

“Progress in childhood cancer has been dramatic for some sites, but we cannot let that blind us from the fact that progress has been disappointingly slow for other sites, and that cancer remains the second leading cause of death in children,” said Otis W. Brawley, M.D., American Cancer Society chief medical officer. “There is much work to be done to improve outcomes, to reduce side effects associated with cancer and its treatment, and, we hope, to understand more about the molecular events that lead to childhood cancer in order to come up with ways to prevent or detect it early.”

“It is important to recognize that all of the issues identified in this report, including the long term and late effects of cancer treatment, came about due to the foresight and dedication of pediatric oncologists, researchers, and other health professionals who have dedicated their lives to fighting these deadly cancers,” said lead author Elizabeth Ward, PhD. “This report, which was compiled from published research, is intended to inform the broader clinical community and public about the unique and complex challenges faced by children and adolescents with cancer and the growing number of survivors of these cancers.”

In an accompanying commentary also published in CA, Jennifer Cullen, PhD, MPH, a cancer epidemiologist, mother of a child diagnosed with cancer, and a board member of the American Childhood Cancer Organization (acco.org), writes that “[a]s a cancer epidemiologist, I was better equipped than most parents to face down this crisis. But that realization frequently left me wondering: how did families with little medical knowledge or inflexible work schedules manage their fears and navigate the numerous daily unknowns? …Having to choose between treatment strategies that are terrible and terrible really presents no choice at all.”

“We have seen successes for some cancers, but others remain incurable and untreatable,” she continues. The new report “is an essential inventory to help evaluate our progress and shortfalls. Importantly, for the first time in over a decade, instead of presenting these figures in the aggregate, these more comprehensive data tease out several specific cancer types to capture a clearer picture of the actual childhood cancer landscape today. These figures demonstrate tremendous variation in survival and success rates across the different cancers affecting children.”

Leearn more about cancer in children here.

Article: Ward, E., DeSantis, C., Robbins, A., Kohler, B., and Jemal, A. (2014), Childhood and Adolescent Cancer Statistics, 2014. CA Cancer Journal for Clinicians. doi: 10.3322/caac.21219. Published online ahead of print January 31, 2014.

Commentary: Cullen, J. (2014), Because Statistics Don’t Tell the Whole Story: A Call for Comprehensive Care for Children With Cancer. CA Cancer Journal for Clinicians. doi: 10.3322/caac.21215. Published online ahead of print January 31, 2014.

Jessie Rees Foundation’s Special Connection Hospital Visits!

Special Connection Hospital Visits Through the Jessie Rees Foundation

children's hospital visits

Our most favorite thing to do is to spend time with our heroes–courageous kids who inspire us every day to Never Ever Give Up. Over the past two years, we’ve made countless special connection visits with our TeamNEGU All-Stars– visiting hospitals, delivering JoyJars and most importantly loving on the kids in treatment. Here’s how we get ready for these very special visits.

Before a hospital visit, our team works with the hospital staf on the logistics of the visit–dates, times and we also ensure that we come equipped with more than enough JoyJars for all the kids in treatment.

Behind the scenes, our volunteers get busy stuffing those perfect JoyJars in preparation for the visit. As always, each JoyJar is stuffed to the rim with hospital-approved, age appropriate toys and games. On average, 200 JoyJars are stuffed and prepared for a hospital visit.

children's hospital visits

Once the JoyJars are ready, members of our TeamNEGU All-Stars pack up and head out to the hospital. As our All-Stars visit with each of the kids, they hand them a JoyJar, encourage them with support and let them know that they have an entire community behind them. Kids are given NEGU medals and other NEGU flare to remind them of the NEGU spirit that lies within each of them.

To-date, we’ve visited hundreds of children’s hospitals and had the special opportunity to bring joy to thousands of kids. To learn more about our special connection visits and the hospitals we serve, visit our hospitals page

 

 

From Inside a Pediatric Cancer Treatment Center

Ann Graham, courageous fighter and survivor, recently shared on CNN, her experience as a patient at Memorial Sloan Kettering Pediatric Cancer Center in New York. In 2011, at the age of 43, Graham completed treatment for a rare, pediatric bone cancer, osteosarcoma. As an adult in treatment in a pediatric cancer center, Graham fought hard alongside some of the most courageous heroes of all time–childhood cancer fighters who she calls “cancer avengers”. Here is an excerpt from Graham’s article, An adult in the pediatric ward: What the littlest Cancer Avengers taught me, and what these courageous kids taught her about fighting and the importance of HOPE.

Never Giv eUp Hope“At the time, I was unsure of almost everything, including how I felt about being in the Pediatric Day Hospital as a patient. We learned the hospital would be my home away from home during my nearly yearlong treatment. I spent at least one week of every month with the sickest people you can imagine. Little people with no hair, missing limbs and treacherous looking scars; it was harrowing at first.

Then I became one of them: No hair. Giant, treacherous scar. Wheelchair. Ever-present IV pole, and dusty-rose colored kidney-shaped bowl to throw up in. These were all outward signs of a fraternity of warriors that no one wants to belong to. They all were enduring the same grueling treatment I was — only they were, on average, 10 years old.

This fraternity of Cancer Avengers was wise in ways beyond their years. When faced with the courage and bravery of these little superheroes, I had to give myself the “Put your big girl pants on” speech more than once….”

“I never got depressed with the Cancer Avengers. They never talked about cancer. They talked about friends, music, sports and Spiderman. Hope prevailed in Pediatric Day Hospital. Over the last three years, some of the bravest superheroes I know have traded in their capes for angel wings. It’s not fair. Pediatric cancer centers should not exist. The soul-twisting pain that the families of these angels endure is too big for me to attempt to describe or even fully understand.

We need to do better for these children. We need more money for the people doing meaningful research to save them. Not all superheroes wear capes. Some swoop in when you least expect it and save you from the miscreant evildoers that are cancer and despair. The secret power of the little superheroes is hope. Hope slays despair and shines a bright light in the darkest room.

I am grateful to have been witness and beneficiary of their powers.”- Ann Graham

To Read Graham’s complete article on CNN, visit An adult in the pediatric ward: What the littlest Cancer Avengers taught me

Happy Birthday Jazmin!

Happy Birthday Jazmin!

JazminIs there any better time to open your own JoyJar than on your birthday?!?! Last week, we had the opportunity to make a special delivery to courageous kid Jazmin, who recently celebrated her 5th birthday!

We are so honored to be able to bring Jazmin some fun, joy and love from our JoyFactory. This year Jazmin is celebrating much more than 5 years..this year Jazmin is celebrating that she has beat medulloblastoma after her courageous fight since the age of 3..Jazmin is now..cancer free!

Jazmin, we celebrate with you and are so inspired by your courageous, strength and your determination to Never Ever Give Up! We can’t wait to see all the amazing things in store for you in the coming years…. and we will NEGU for you!

Do you know of a courageous kid celebrating a birthday soon? You can request their own birthday JoyJar too! You can do so here–JoyJar Requests