Category Archives: NEGU Kid

My Jessie Journal

My Jessie Journal:: Hi Sweet-Pea, it’s daddy. I miss you soooooooo much. I miss your smell, your hair, your hugs, kisses and smile. I miss holding your hand. I love this picture of us. I miss your pranks and your belly laughs. I miss you saying…”Hi daddy, how was your day?” I miss your sun soaked tan skin and your muscular little swimmer body. I just miss you. Some days I feel like I’m out of tears by the end of the day.

Last night I had the opportunity to speak to Young Women of Vision. It’s a great group of teenagers and their moms committed to being everything God made them to be. Guess what I shared about=)…YOU!!!! I challenged them to ask themselves the same question you asked mommy and I in the car after treatment back in April 2011. You asked…”When do all the other kids come home?” After my answer about kids having extended stays in the hospital the next five words out of your mouth have forever changed the tapestry of my life…you simply ask, “How can we help them?” I shared with the girls in the group how better the world would be if everyone asked themselves…”How can we help them?” I think they got the challenge…my goal was to plant seeds of compassion in their hearts.

I also got to share your story with another Olympic swimmer that you actually met during a big meet at the swim team. I showed her a picture of you giving her the award she had won. Seeing the picture made me cry but I recovered pretty quickly. I’m getting good and drying tears in milliseconds. She wanted to meet with me to talk about “rebranding” herself. Her award glittered career had come to an end and she was in need of clarity in her life. My challenge to her was to reflect on the your statement and more specifically finding a way to use her platform for good.

It made me think Jess, some people have big famous platforms and don’t use it for good then there are little people like you that want no attention and simply want to put smiles on faces. You always talked about the smiles you saw on kids faces after getting their fun filled JoyJars. I look at every picture posted or emailed in of kids smiling in their hospital beds and think of you. Their smiles makes me smile.

I love you so much Jess. I still can’t fathom how I’m going to get through the next 40 years without you physically by my side. Even as I type, my stomach is starting to tighten, it’s getting harder to shallow and these little drops of liquid drip off my nose. All because a father misses his sweet-pea.

Miss you tons…love you more…see you in a wink!

xoxo
daddy

NEGU For Nathanael the Brave

Nathanael

 NEGU for Nathanael the Brave!

Team NEGU, we are so honored to introduce you to 6-year old Nathanael, otherwise known as Nathanael The Brave!

Nathanael is a bright and courageous young boy who loves many things including nascar racing, legos, history and space exploration. Nathanael’s mom also tells us that he has a special love for science and is a learning sponge for all of the complex medical terms and information related to his treatment. Nathanael has been courageously fighting Wilms Tumor since January of 2013. Since then Nathanael has been so brave in undergoing four surgeries which required the removal of one kidney, a tumor in each lung and an infection in his finger. Nathanael is currently undergoing a 24-week span of chemotherapy. But despite Nathanael’s tough journey, his bravery and strong-willed nature shine through in everything he does.

Nathanael

“Nathanael is a boy that is caring and has the mind of a 20 year old. He is strong willed and brave. He may not be like all other children in this area. He looks to God and the bible for his answers and inspiration. Nathanael inspires me because no matter how defeated he is he will not let anyone walk all over him. He stands his ground and pays attention to everything that affects him”. 

 

Team NEGU, please join us in sending Nathanael lots of notes of encouragement and joy and more fuel for his fight. You can visit Nathanael at Nathanael the Brave. Nathanael, you have the support of our entire NEGU community and we are all behind you!We NEGU for YOU!

We NEGU for Aaliyah!

AaliyahNEGU Kid of the Week- Aaliyah!

 

This week we are honored to introduce our NEGU kid of the week, Aaliyah! 8 year old Aaliyah is a talented dancer, both in ballet and hip hop.She is a fun-loving girl who has a love for many things including drawing and reading

Aaliyah has been courageously fighting metastatic ewings sarcoma since August 15, 2013. Despite the difficult journey Aaliyah has had to travel down with fighting an inoperable tumor on her pelvis and 7 smaller tumors in her lungs, Aaliyah is determined to beat cancer once and for all.  “Both her strength and spirit have been an encouragement to everyone surrounding her. She has endured numerous tests, blood draws, anesthesia and tests. She just recently lost her hair as well and she has remained positive through it all. Although she is currently unable to walk she has been fighting with everything in her to maintain her independence and swears she will be up and walking again!”- Aaliyah’s mom. 

Aaliyah has a huge heart and a passion for helping other kids in treatment with her. She gives so much encouragement to other kids and is an inspiration to so many. “She, on her own, has told me that she will not let cancer win and she intends to win this battle. She recently met other children that are going through cancer treatments and has promised to support them. She has the love and support of her family and I (Mom) intend to be there EVERY step of the way! Aaliyah continues to think of others even during all of this. She loves to make personalized thank you cards and hand them out to anyone who helps. Although she is unable to walk for extended periods of time and is in a lot of pain, she is bound and determined to begin walking again. She gets up and walks with her walker on a daily basis, we are looking forward to physical therapy. She has maintained such a positive attitude throughout all this and I am just amazed by her!- Aaliyah’s mom. 

Aaliyah, your courage and strength are an inspiration to all of us and we are honored to be part of your support and encouragement team so that you have all the fuel you need for this courageous fight. Aaliyah, We NEGU for you! Team NEGU, please join us in sending Aaliyah tons of notes of encouragement and joy at Aaliyah’s Fight Against Ewings Sarcoma

Would you like to nominate your courageous fighter as a NEGU kid? You can do so here!

 

We NEGU For Chylee!

NEGU Kid of the Week-Chylee!

Chylee

 

 

We are so honored to recognize our NEGU Kid of the week, Chylee! Chylee has been fighting ALL (acute lymphoblastic leukemia) since March 2012. Through it all, Chylee has maintained her strength, her passion, her laughter and her love for life as she continues to show cancer that it picked a fight with the wrong girl. Chylee’s mom shares with us, “Chylee is just amazing! She is so very silly, and always has us laughing! Her spirit keeps us rejuvenated! Though this is a really rough spot in the road, our family has pulled together and is ready to get to the life without cancer!”

 

Chylee continues to fight with such amazing strength. After experiencing a relapse in October 2013, Chylee’s response has been to come back with even more fuel for her fight. Although Chylee’s journey has been rough, Chylee’s mom tells us that her fighting spirit is stronger than ever. . “It has been a huge blow to our family! But I have had the opportunity to see Chylee grow so much Chyleethrough it. Though we are mourning things like, losing hair, missing school, missing Halloween, steroids, etc… she has come back with an, ‘Okay. Now let’s do whatever it takes to kick this thing!’ attitude. She wants to live! She has said that 10-years of life is not enough for her!”- Chylee’s mom

Chylee is looking forward to a bright future as a hair dresser and would love to own her own hair salon. She also loves arts and crafts!

Chylee is determined to Never Ever Give Up and encourages other kids to do the same. “She has taken this hard journey with such strength. It is hard, and it hurts. Through her, we are always looking at the end in sight, the positives in the chaos, and the faith in God we need!”- Chylee’s mom

Team NEGU, please join us in sending Chylee lots of NEGU notes of encouragement and love! You can visit Chylee at Chylee Vs Leukemia. Chylee, we NEGU for you!

 

 

VioletWe are so honored to recognize our NEGU Kid of the Week, Violet! Violet is a sweet, smart and spirited little girl who loves giggles, hugs and LOVES spreading joy to others! Violet is in the remission stage of her fight with retinoblastoma and she will never EVER give up fighting! This is Violet’s story, shared by Violet’s mommy Shenay:

“On Monday, July 18th, 2011 our sweet baby girl Violet was diagnosed with Retinoblastoma, a very rare form of pediatric cancer that develops in the retinas of the eyes. Violet was just 7 months old when she began treatment. After genetic testing, it was found that Violet has the RB1 gene. This means that not only is she susceptible to tumors occurring in her eyes, but she also has a higher probability of tumors occurring in other parts of the body throughout her life. Violet was also found to have a small deletion in chromosome 13. This deletion is known to cause many issues including growth and developmental delays, autism, retardation, low muscle tone, kidney failure, seizures, blood clotting, sensory processing disorder and more.

Violet has gone through CT scans, MRIs, surgeries, having a port-a-cath, blood draws, injections, chemotherapy, exams under anesthesia (EUA) and more. She completed active treatment in 2012 and is in remission! She continues to be monitored with Exams Under Anesthesia (EUA), labs and Oncology follow ups every 12 weeks at Seattle Children’s Hospital.

 Even through and after everything she has endured, Violet is a sweet, smart and spirited child who loves life. Every day you can find her listenining to music, singing, playing her piano and dancing. She spreads joy everywhere she goes with her smile and outgoing personality. Violet makes us melt with her cheerful giggles and hugs.

 She reminds us through her healing to always count our blessings. Violet has shown us the true meaning of faith and what being grateful with your whole heart is really all about.

 We humbly ask that you keep our Violet in your prayers. By the grace of God she is doing amazingly well! She is such a happy and loving little girl and she is surpassing all of her milestones.”- Violet’s MommyNEGU Kid Violet

Team NEGU, please join us in sending Violet lots of NEGU notes of encouragement and joy! This will be Violet’s first year of trick-or-treating and she is SO excited! Let’s go show Violet that she has a world of support behind her, celebrating with her, and Never Ever Giving Up for her. You can visit Violet at http://www.facebook.com/violetbriellesurvivingretinoblastoma

NEGU Team Captain Kurt!

NEGU Team Captain, Kurt!

High school football teams all over Orange County are suiting up for their annual homecoming game. The Capistrano Valley High School Cougars celebrated this special week with lots of school spirit, a fun rally and a great game against Dana Hills High School.

NEGU Team Captain KurtThis year, the Capistrano Valley football team, welcomed their newest team member to the roster this week, 9-year old courageous fighter Kurt! Kurt, a Yorba Linda resident, joined the Capo Valley team all week in preparation for their big game. In fact, Kurt played such a big role in the team’s game-day preparations, that he was named Honorary Team Captain for the week! Joining the team at their pre-game dinner, helping at practice and standing side-by-side with the team on game day, Kurt was instrumental in making sure his team was well prepared for their special game.

Kurt is currently in the remission stage of his fight with leukemia and he will never ever give up! if you would like to send NEGU Team Captain Kurt a message of encouragement, please do so on his facebook support page  Kourageous Kurt! NEGU Kurt

A big thank you to courageous fighter Kurt for all of his hard work in serving as his role of NEGU Team Captain for the Capo Valley Cougars. And a big thank you to the Capistrano Valley High School football team for welcoming Kurt in as part of your own, and for giving him this one-of-a-kind, special opportunity to put leukemia aside for a while and to do something fun!

If your school would like to host a NEGU Team Captain, please email our Special Connections Coordinator, Cheryl Ingraham, at cheryl@jessie.org

 

We NEGU for Super Man Sammy!

Super SammyNEGU Super Man Sammy!

We are so honored and privileged to recognize Super Man Sammy as a NEGU courageous kid! Samuel is a 3-year old courageous little boy who has been fighting a Primitive Neuroectodermal Tumor (PNET) since he was 22 months old. Samuel has been so brave and courageous through his entire journey and has shown that he will never ever give up fighting. This is Sammy’s story shared by mommy Jennifer:

“In May of 2012 Samuel under went a major brain surgery in hoping to get a biopsy and the neurosurgeon was able to remove 80% of the tumor, Samuel fought the last 20% of the remaining tumor with chemotherapy for 6 months including high dose chemotherapy at the Children’s Hospital of Wisconsin. Samuel was in remission as of November 2012 and he was to do follow up MRI scans every 3 months… Samuel had to re-learn how to walk again after his surgery. He had an awesome summer at home! You never know the meaning of “Home Sweet Home” until you literally can’t go home and you live in the hospital and the Ronald McDonald house for 6 months. We are a Family of 6- Daddy,Mommy, Sister, Brother, Samuel and little brother. On August 21st 2013 Samuel had his routine MRI scan and we received devastating news that the Tumor was growing back! He had a repeat MRI on September 18th 2013 to see if the tumor had grown and it did. Samuel’s Neurosurgeon scheduled a brain surgery to remove the tumor two days later on September 20th 2013. The neurosurgeon was able to remove the tumor! Samuel will need 3 weeks to heal after surgery, he will have a port placed and will start radiation and chemotherapy shortly after. We as a family are hoping, praying for another Miracle! We did it before and we will do it again! We will never ever give up!!!”

Team NEGU, please join us in sending Samuel lots of NEGU prayers and encouragement so that Samuel has the support he needs to finish this fight and put cancer in his past–forever! Super Man Sammy, we NEGU for you!! You can visit Samuel at Super Man Sammy

Happy Birthday Travis!

TravisHappy Birthday Travis! We NEGU For You!

On October 4, Travis will be 12 years old! And we are so honored to use this special day to honor Travis as a NEGU Kid and to shower him with lots of birthday wishes, special prayers and lots of NEGU encouragement!

Travis is an amazing young man with a heart of gold! Travis is a passionate advocate for childhood cancer awareness and a special friend to many kids fighting cancer like him. When in clinic for his own treatments, Travis is known for playing with the younger kids and helping to keep the them from being scared. Travis knows that he would like to help kids fighting cancer when he grows up and has his heart set on becoming a pediatric neuro-oncologist and researcher when he grows up. He plans to attend University of Penn Med School so he can intern at Children’s Hospital of Philadelphia.

Despite the struggles Travis has faced in fighting an inoperable brain tumor, he continues to keep his “million dollar” smile bright, his head up and his eyes on his future. One day in treatment, Travis leaned over to his mom and said, “Mom, don’t worry about me, I’m not going to die. I have too much to do. I have a destiny. No kid should go through this and I have to help make it stop.”

Knowing that he has a mission to bring awareness to childhood cancer and to fight for a cure, Travis is using his special birthday celebration to make a difference. In lieu of gifts, Travis has asked that his family and friends join him in donating to the childhood cancer charities that mean so much to him.

Team NEGU, please join us in sending Travis lots of special birthday wishes and NEGU encouragement! Happy ‘Very Special’ Birthday to you Travis! We will Never Ever Give Up for you and are so looking forward to seeing all the wonderful things to come for you. You can visit Travis at
https://www.facebook.com/smilesfortravis1

Ayden- This is Our Wish For You

AydenDear Ayden,

To look back and remember the baby boy that bounded out at birth, whose boisterous laughter brought such joy to us all, whose crazy “jumping off everything” antics made our hearts worry and whose sensitive heart has given others such compassion and strength; Ayden you truly are a “rock star” to us.

You once asked what I truly wish for and as we lay in your bed late at night talking of our dreams, crying from the pain of lost days behind us, the thought of life possibly cut too short, not once did you lose sight of what you truly wanted: to be loved. In all my life growing up, I made a wish to the stars and a prayer to God to bless me with a happy marriage, healthy children and a thankful and loved life. I can say I have been blessed many times over and am so thankful for what I have been given in life, but also from what I learn everyday still and a lot of that from you.

You have taught me that my life is not mine alone, but that to share. You make me proud of you every time you stand up and smile, laugh or even get mad at yourself to get better and push on. You give me strength when I know it’s hard for you to move forward. You have not only learned compassion from your dad and I, but you have taught so many others, from friends and strangers, how to open their hearts, eyes and lives to others who need help.

Ayden

My “wishes” have come true, but have yours? Not nearly yet! Wow, the life you have yet to lead…it’s all there, waiting for you to live it! The love you seek is there, from your parents, to three lovely sisters, your amazing friends, teachers and even your nurses all give you so much love you even have to sometimes push us away, laughing at our hugs and words. However, your dreams are safe with me and daddy. We have all whispered them, set them aside in our minds and each know that what you will be “that” dream.

Our wish for you?

Life.
Live the life you want to lead.
Love the life you deserve to have.

As your parents, we will be there by your side, cheering you on, fighting along side you, pushing you when you feel like it’s just too hard. Your strength thus far, fighting for your life through surgery, brain cancer, treatment, therapies; will seem like a cake walk when all is said and done because you, our Rock Star, have already persevered through more in your 8 years then most adults will have within their lifetime. You will be the fighter, the scholar, the athlete, the musician, the husband, the father, the success…whatever you truly “wish” to be…

You are our son, you have an inner strength and you are forever loved.

NEGU Bubba!

Mama & Daddy

Support and Encourage Jade

Support and Encourage Jade!!

Jade16-year old Jade can light up a room with her sparkling beautiful eyes and bright smile. Jade has a contagious silly side to her, but also has the most courageous spirit and kind heart. Jade’s mom shares with us that fighting Acute Lymphoblastic Leukemia B Cell has put Jade’s strength and courage to the test; and that Jade has proved to have the strength of a warrior as she continues to fight to put ALL B Cell where it belongs–in her past.

“I always knew my daughter had a good heart and a kind nature, but now I see that she has the strength of a warrior. I didn’t know how she would handle all of this but she has been such a trooper; fighting for her life, rarely complaining and even donating to other people who are in need when she can. I have the utmost respect for Jade and couldn’t be prouder of the young lady she has become; stepping up to the plate to fight and win this battle. Her courage, strength and endurance is awe inspiring’ – Jade’s mom.

JadeJade was diagnosed with ALL B cell on April 1, 2013 and has endured intense chemotherapy treatments, multiple infections, blood clots and extended hospital stays since that day. The town Jade lived in didn’t have a children’s cancer facility so her family had to relocate 4 hours away from friends, family, pets and their home in order to be able to get Jade the assistance she needs to fight this battle.

Jade is a cosmetologist in training. She loves cutting, dying and styling hair. She also loves riding dirt bikes, playing soccer and hanging out with her friends.Treatment has restricted Jade from doing some of these things she loves, but it hasn’t stopped her from focusing on her new favorites of makeup design, watching movies, playing xbox and her long time love of listening to music.

Jade’s mom tells us that it is the support from her friends, family, and even strangers that continues to inspire Jade to fight on. Jade now knows that she has a community of support behind her, cheering for her, rooting for her and Never Ever Giving Up for her. Team NEGU, let’s join Jade’s community of support by heading over to her support page to offer her lots of notes of joy and encouragement. You can visit Jade’s support page