My Jessie Journal

My Jessie Journal…Forever a Family!

Hi Sweet-Pea, it’s daddy. Kind of tired this morning. It has been a super busy (and fun) week at Nike for the Elite 11 QB camp. The courageous kids that came out to meet the players and coaches had a super time. Lots of smiles, which always remind us of you. We also visited two children’s hospitals and encouraged kids to NEGU with a few NFL players. This one nurse said, “I love JoyJars. We had them at the hospital I just came from in Arizona. They are the best gift ever.” That was super nice of her to say. One of the NFL players that went with us said, “That was soul therapy and I needed it.”

I also got to see my mom and uncle Sean and his family, which was nice. They all talked about you.

Speaking of family, last night was a hard one for us. We went to dinner at Cheesecake Factory and played this card game “Table Topics”. Some of the questions were…

What gets you excited in life?
What life lesson have you learned the hard way?
What do you wish you spent more time doing five years ago?
Describe your life in 6 words?
What is your biggest hurdle in life?

Every answer mommy, Shaya, JT and I had included you. As we answered the questions tears started to flow out of our eyes. People were looking at us but it didn’t matter…we just sat there as a family crying talking about you and missing you. We will always be a family of 5 no matter what.

We all think about, talk about, laugh about and cry about YOU! We miss you so much and we will do everything we can to reach every child fighting cancer as you asked.

Forever a family of 5!

xoxo,
daddy

 

By |July 10th, 2014|Categories: General, My Jessie Journal||0 Comments

My Jessie Journal

My Jessie Journal…Hi my little Sweet Pea…it’s daddy.  I miss you so darn much.  I will say that for the rest of my life because it’s true…I miss you!  I also “love” you more than words can describe.  You are my daughter.  You are my Jessie.  You are part of me and I’m part of you.  You are my Sweet Pea.  Non of this is ever really going to change until I see you in Heaven.  It’s just the life I live now.  A life of silent pain and joyful moments.

Speaking of joyful moments, I saw this saying on Twitter and thought of you…“Life is not about waiting for the storm to pass, it is about learning to dance in the rain.”  That is you Jess.  You didn’t sit and sulk and wait for the storm to pass…you danced by spreading hope, joy and love to your peers fighting cancer.  That same love is being shared daily in your memory.  Thank you for dancing in the storm of cancer.  I know it was not fun for you and some days it felt like the thunder and lighting were unbearable…but you were so strong.  I remember all the radiation treatments where you had to have your head bolted to the table…you never once complained.  You danced!  I remember the 100+ needle injections into your frail arms, which you hated but you still danced!  I remember the chemo trips and the pain you had but you danced!  I remember the chocking episode that caused you not to eat for a while but when the doctors said you really needed to eat solid food you did and your danced!  I remember the talk about heaven and seeing your lower lip quiver and tears dripped down your face…you didn’t panic or crumble…you danced! 

Thank you so much Jessie for dancing in the biggest storm of your life…I’m not a very good dancer but I’m learning day by day to dance as this dark, cold and windy storm tries to drowned me with grief.  As I dance I always look forward to the moments when the clouds separate and the sun shines through…those are rays of love from above that warm my skin, calm my heart and renew my joy.  The old song…”The sun will come out tomorrow”…is so true.  The sun will always shine no matter how big the storm and how bad of a dancer I am. Keep sending the sun Sweet Pea.

I hope you are still dancing Jess!  I promise to keep trying down here as the storms roll in & out…I miss you tons and love your more.

Hugs and kisses…

daddy

By |July 3rd, 2014|Categories: General, My Jessie Journal||0 Comments

My Jessie Journal

My Jessie Journal:: The call I wish I could make…
 
Ring…Ring…Ring…   
 
“Hello.”  
 
Hi Sweet Pea, it’s Daddy.  
 
“Hi Daddy.  It’s so great to hear your voice.  How are you doing?  I miss you so much.”  
 
I miss you too Jess.  I think of you every day and wonder how you are doing? 
 
“I’m doing good.  My room is really cool.  I get to take care of Kobi & Bruin now that I’m here in Heaven.  They are doing great.  Bruin still loves to hold three tennis balls in his mouth.  I swim with Coach Fran a couple times a week. He is so fast. I help welcome all the new kids that come up that had cancer.  Notice I said “had cancer”.  There is no sickness or sadness in Heaven daddy.  None!  It’s a really great place.  We have our own club called ClubNEGU.  We NEGU for all of our parents and siblings that miss us so much.  We never ever give up praying for you all.  God will comfort you each day daddy.  We also play games, ride bikes and just hang out.  I’m also learning to bake these new Heavely sweet-cakes that I just love.  They are so yummy.  Nothing like Aunt Kimmy’s cookies.  Those were so amazing.  I’ve also met some other people that know you through church.  Everyone here is so nice.  I’m safe daddy.  I promise.”  
 
That is so great to hear Jess.  Aunt Kimmy’s cookies still are amazing…she makes them every time she visits. 
 
“Daddy, how are you and mommy doing?  How is Shaya and JT? How is Mr. Moe?”  
 
Honestly Jess, we have our good days and bad days because we miss you so much.   
 
“Daddy, remember I’m just on my special mission trip.  Like when you use to go to Africa and India for weeks.  My trip will be a little longer but we will see each other again.”  
 
I know Jess…I know.  Just getting use to this trip you are on.  Shaya finished up 11th grade.  JT finishes 6th grade next week.   Nana, Papa, Kimmy, Uncle T, Tanta and Bob all miss you and talk about you.  We love talking about fun times with you like when you forced us to eat those nasty tasting jelly beans called “Bean Boozeled”. You laughed and laughed as mommy and I tried to chew and swallow those silly beans.    Mr. Moe is doing great.  Loves the pool.  Loves to lay on the couch.  Loves to sleep next to mommy.  He still wimpers when he goes into your room.  I just know he can sense you in there and smell you.  He’s an amazing puppy…big puppy.  
 
“Daddy…Yeah Jess.  Please give everyone big hugs and tell them I love and miss them all.”  I will Sweet Pea…I will.  I Promise.
 
Jess.  “Yeah Daddy.”  Your book releases worldwide on September 2nd.  Do you like the cover I posted on your fan page?  
 
“It’s nice daddy.  It’s kind of weird to see a picture of me on a book cover. You know I never wanted my sickness to be about me.  I wanted to help the other kids and give them joy.  Especially the ones that couldn’t leave the hospital.”  
 
I know Sweet-Pea.  You created a ripple in the world of childhood cancer that is moving bigger and bigger each day.  Lots of people want to hear the whole story and share it with others that need a boost of hope.  I like to say JoyJars are boosts of JOY and your book will be a boost of HOPE.  Hope to anyone facing any challenge in life.  
 
“I trust you daddy.  You’re the best daddy in the world.  If it helps people then I’m all for it.”
 
It will Jess…it will.  
 
I’m so glad I was able to call you today…it’s been such a long time and I just needed to hear your voice.  
 
“Daddy, it really hasn’t been that long.  It’s just a “wink” remember.  Please call again.  Love you daddy. Bye.”
 
Bye Sweet Pea…Love you too.  Miss you tons.  See you in a wink.
 
xoxo
daddy
By |June 19th, 2014|Categories: General, My Jessie Journal||0 Comments

My Jessie Journal

My Jessie Journal::  Hi my amazing and inspiring Sweet Pea…it’s me again=).  Broken and blessed at the same time.  Broken because you are not physically here…blessed because you were physically here and I got the honor of raising you for those 12 years and being your daddy.  I would have loved many more but that was not in the deck of life cards I got dealt.  My deck, like many others, had a card I never saw until I heard “Jessie, has cancer.”  Then my deck changed forever.  Sometimes we don’t see all of the cards in our deck until the right time…while there is never a “right time” to have a child you love more than yourself move to Heaven before you…we hold on to God’s promises and great memories.  That is what this new season is all about…holding on to memories while creating new memories with JT and Shaya.  I used to think creating new ones was being disrespectful to you but it’s not.  It just another card in my deck.  Sooner or later I too will lay my deck down and join you…oh that will be a great day Jess.  
 
I was looking at some of the notes you gave me during your 10 month fight with cancer.  This one jumped out of the pile at me as Father’s Day nears.  You gave it to me on Father’s Day 3 years ago.  So pure, so powerful and so you.  That smile…those eyes.  Hair or no hair you were so gorgeous. You were always great with your feelings and words.  You were always sensitive and caring.   To be honest, the last two Father’s Days I tried my best to sprint through them.  Just didn’t want to “feel” the loss and pain anymore.  Honestly, it wears on you day after day.  Then when special days come it’s like a dump truck pulls up to you and decides to dump thousands of pounds of raw, intense and painful feelings into your memory banks. Then everything feels heavy and like your soul is flooded with pain.  I don’t want the dump truck to show up this Sunday Jess…I just want to enjoy my memories with you and my moment with JT and Shaya.  That is all I get…a moment…to laugh and to love.  That is the moment I know I need to create for JT and Shaya need.  Just like you…they need their daddy too.  
 
Darn…here comes the tears.  That word “daddy” gets me every time.  Daddies get the opportunity to help shape their kids lives…our words, our jesters, our tones…it all has the opportunity to help or hurt.  I wish my daddy would have wanted to love be instead of beating the crap out of me.  He liked his drinks more than being a daddy.  Thankfully I have learned from others what a daddy can be and the choices I get to make.  Like I tell parents…”It’s not what you say that matters…it’s what your kids see”.  I can say I love you but if you never see love out of my attitude and actions then “love” to you becomes shallow, false and uncertain.  I was not a perfect daddy to you Jessie but I hope you know I did the best I could with what I had…I promise you that!  Darn tears again…
 
Miss you so much…love you way more…see you in a wink.  Promise!
 
xoxo,
daddy
By |June 12th, 2014|Categories: General, My Jessie Journal||0 Comments

Girl Scouts Make Bears for Courageous Kids

 

Girl Scouts Make Bears for Kids in Hospitals

This past April, the Jessie Rees Foundation, in partnership with the Orange County Girl Scouts and Downtown Disney, hosted our second AND third Build A Bear events. With more than 80 Girl Scouts volunteering, both events proved hugely successful.

Held April 12 and 19, last month’s events attracted more than 80 Girl Scouts, along with a number of volunteers from Disney. During each event, the volunteers built, dressed and accessorized approximately 160 bears to be distributed to patients at Millers Children’s Hospital in Long Beach, CA.

The events, which lasted from 8:30 a.m. until 10:00 a.m., began with a video sharing Jessie’s story, followed by an update on what the Jessie Rees Foundation is doing now. After the video, the volunteers went through the Build A Bear process, creating stuffed animals to help spread Jessie’s joy and message- Never Ever Give Up- to hospitalized children in Orange County.

Cheryl Ingraham, who acts as Children’s Hospitals & Special Connections Coordinator for the Jessie Rees Foundation, said the partnership between NEGU and the Girl Scouts will continue well into the future, and has also given the community a way to be involved.

“It’s very cute. Some girls dress up their bears and get stuff for them, and others are just plain. The hospital loves them all!” she said.

We are excited to continue hosting these Build A Bear events to help encourage children fighting cancer to Never Ever Give Up!

By |May 19th, 2014|Categories: General||Comments Off

Compassionate Volunteer–Katrin Koch!

Compassionate Volunteer Katrin!

photo 3

 

We are so honored to have so many amazing volunteers working beside us, helping us encourage kids to Never Ever Give Up.

This year, we have a special volunteer joining us all the way from Germany! Katrin will be heading up a volunteer team in Berlin as ensures the kids in treatment at her local hospitals get a much needed boost of joy and love from our Joy Factory. Katrin has delivered JoyJars to the kids in hospitals and helps spread awareness for childhood cancer in her community!photo 2

Katrin joined us this year at our NEGU Gala and we are so excited to have her as a part of our NEGU team! Thank you Katrin, for all that you do to support kids fighting cancer around the world!

 

By |April 23rd, 2014|Categories: General||Comments Off

My Jessie Journal

My Jessie Journal:: Hi Sweet Pea, its’ daddy. Crazy and fun times at the JoyFactory these days. The team is working super hard to get ready for this big event we are doing in Dallas. We are all super excited to release your new “Summer Fun” JoyJars on June 1st. We already have over 100 pre-orders from Children’s Hospitals across the US wanting them for their courageous kiddos. We will ship over 5,000, which is so amazing. By the time we end this year we will have surpassed 100,000 JoyJars since you made the very first one 3 years ago this month. That’s 100,000 smiles, boosts of joy and most importantly children we get to encourage to Never Ever Give Up.

We also have the amazing opportunity to send a Courageous Kid (and family) to a special taping of America’s Got Talent and meeting with Heidi Klum this summer in New York. You loved her from Project Runway…so amazing we get to do this. This is all due to the hard work of a great member of your Board of Directors. The entire team loves you and wants to see more courageous kids encouraged to never ever give up Jess. I just wish you were here to thank them for their super hard work and dedication to your “Wish”.

Someone email me and said…”Would you rather only be able to focus on… “What you don’t have” or “What you do have”….Initially that was a hard one for me to consider. It made me really pause and think. My heart says focus on you and what I don’t have anymore but I know you would never want that. You were always focused on others rather than yourself. So I will do my best to follow your lead and look at everything I still have….

– One amazing wife…I’m so blessed with a bride that is full of love, encouragement and grace. Your mamma misses you more than words can describe.

– Two incredible kids…Shaya and JT miss you so much too and want to do anything they can to help other kids fighting cancer.

– Three hundred thousand wonderful fans…Your Facebook team has given me so much encouragement. If it wasn’t for them I would be one depressed dude. They inspired me daily to NEGU for you.

– Four crazy doggies…Mr. Moe being one of them=). He misses you too.

– Five strategic partners…UPS, American Airlines, Anthem BlueCross, COX Communications and Clear Channel Media. These amazing companies help us in so many great ways. They all are led by wonderful compassionate people that want to help encourage children fighting cancer to NEGU.

– Tons of kids we “get” encourage to Never Ever Give Up around the world. I still can’t get my mental mind around the amount of people you have touched and inspired. It’s totally crazy. I get countless emails and FB messages from people that you have inspired. One lady recently told me she was going to commit suicide but your story saved her life. WOW! That sill gives me chills.

The list goes on and on all because of YOU. So these are the things I will do my best to focus on rather than the pain in my stomach and ache in my heart. Even as I sit and write to you I feel my mind trying to run forward but my heart is trailing behind asking for my mind to “please stop” so it can catch up. My heart gets tired of the anguish and pain while my mind wants to just run away from it all. Maybe my mind is trying to “deny the realities” or just flat out “survive”….or just maybe it knows the best and most wonderful thing lies ahead so it presses on in the midst of pain.

That amazing “thing” is fact that I get to see you again…all because of Easter. You loved Easter so much. I love this picture of you and those silly bunny ears. You loved to wear them as you searched for treats. It’s because of Easter you are in Heaven and I get to join you some day. That is the best thing for me to focus on today so I will do my best even if my heart is lagging behind.

I love you so much Jess. I miss you to the moon and back. I can’t wait to see you in a “wink”.

butterfly kisses…
daddy

By |April 17th, 2014|Categories: General||Comments Off

Mady's NEGU Room Makeover!

Mady’s NEGU Room Makeover

Madys 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.

By |April 15th, 2014|Categories: General||Comments Off

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”!

 

By |April 9th, 2014|Categories: General, Volunteers||Comments Off

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”.

By |April 6th, 2014|Categories: General, Volunteers||Comments Off

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!

By |April 4th, 2014|Categories: General, Volunteers||Comments Off

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

By |March 27th, 2014|Categories: General||Comments Off

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!

 

By |March 21st, 2014|Categories: General, Volunteers||Comments Off

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.

By |March 6th, 2014|Categories: General||Comments Off

My Jessie Journal

My Jessie Journal:: Hi my blonde, blue-eyed, tan little Sweet-Pea. It’s daddy!!!! I have to say the week started out crappy. Reliving March 3rd 2011 was super painful for all of us. It will be one of those days that I truly don’t think I can forget about. Maybe in 40 years but not anytime soon for me. Wow, it could be 40 years until I get to see you. That just seems soooooooo long. Way to long.

Did you see the Oscars on the Heavenly Jumbo tron? You used to love watching the Grammy’s and Oscars all for the “red carpet”. It was all about the dresses for you. Some you loved and some you simply laughed at. Oh how I would give anything to hear your belly-laugh again. Just once. It is one of the things I miss about you.

At the end of the Oscars a man, named Matthew, won “best actor” and gave a speech. It totally made me think of you. He said in life you need three things…

1) Someone to look up-to
2) Something to look forward-to and
3) Someone to chase.

As he was saying that I was mentally yelling “Jess” after each one. Of course I love and look up to God but I also look up-to you. Not only do I look-up look up to you physically when I tell you each day I love you. I admire your strength, courage, humility and compassion that I look up to you as my little hero. You are the “someone” in my life to look up-to.

When I think about something to look forward-to that is also you. I so look forward to the day we physically embrace again. Heaven used to be just this place I talked about…now it’s so much more and so real to me. I truly believe with all my heart I will see you again. Some laugh and some say I’m to preachy but I just believe and it gives me hope to live each day rather than soaking in anger and living depressed. I look forward to hugging and kissing you again. I look forward to holding your hand as we walk in the park and play with friends. I think about that moment so much it hurts my stomach but it’s one of those things that I so look forward to.

The last thing he said was “someone to chase”. He said he was his hero and he chases himself in years ahead. As he was talking I remembered what you said to the CBS report the first interview you did when asked…”Why don’t you make it all about yourself?” With tears in your eyes you said…”cause that’s not what it’s all about.” You had so much perspective on life at such a young age. It truly inspires me. So when it comes to “someone to chase”…it’s you again=). I chase your wish. You asked mommy and I to help every child fighting cancer never ever give up. That is what I chase each and every day. You peers fighting cancer today. There hundreds of thousands of children that we have not reach yet. That motivates me so much to find ways to partner with others childhood cancer organizations who have reached children that could use a boost of joy.

Jess if I was winning an Oscar and had to give a speech I would say…

”Thank you. I would like to give this award to the one person that I look up to each day, I look forward to seeing some day and the person who’s wish I chase today…my amazing, talented, caring, selfless, inspiring, humble, courageous twelve year old daughter Jessica Joy Rees. Sweet-Pea you have forever changed my life, given me courage like never before, compassion that seems to never end and a drive that is fueled by hope, joy and love. Love ya so much. Daddy.”

xoxo
daddy

By |March 6th, 2014|Categories: General||Comments Off

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

 

 

By |March 5th, 2014|Categories: General, Hospitals||Comments Off