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

By |January 19th, 2014|Categories: General, NEGU Kid||Comments Off

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!

By |December 5th, 2013|Categories: General, NEGU Kid||Comments Off

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!

 

By |November 26th, 2013|Categories: General, NEGU Kid||Comments Off

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!

 

 

By |November 13th, 2013|Categories: General, NEGU Kid||Comments Off

We NEGU for Violet!

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

By |October 24th, 2013|Categories: General, NEGU Kid||Comments Off

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

 

By |October 23rd, 2013|Categories: Families, General, NEGU Kid||Comments Off

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

By |October 15th, 2013|Categories: General, NEGU Kid||Comments Off

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

By |October 3rd, 2013|Categories: General, NEGU Kid||Comments Off

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

By |September 21st, 2013|Categories: Be Their Support, NEGU Kid||Comments Off

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

By |September 16th, 2013|Categories: General, NEGU Kid||Comments Off

Encouragement Round Up For Rylee

Encouragement Round-Up For Rylee

RyleeThis week, we are so honored to introduce 3-year old Rylee, our NEGU Kid of the Week! Rylee is a special little girl with a big heart, a big smile and a special love for so many things. It is many of those special things that have given Rylee the encouragement she needs to put Acute Lymphoblastic Leukemia in her past, forever. Team NEGU, let’s shower Rylee with the encouragement and support she needs to fuel her fight. Visit Rylee at Rylee’s Journey of Hope

 

Here are some of Rylee’s favorite things, which have helped Rylee to keep spirits high, her smile bright and most of all, have encouraged her to Never Ever Give Up—shared by her mommy Melissa:

 

Big Smiles, Big Kisses and Big Hugs

Before her diagnosis, I can remember very few times that I’ve ever saw Rylee down, sad, or cry. She was a healthy, happy little girl, that had never been sick, except with a cold or two. She LOVES her family. She has 3 older sisters, 21, 22 and 25, and an older brother, age 9, all of which she adores, and who also love her so deeply, that they would do anything for her. She does not hesitate to walk up to you several times a day and tell you she loves you, along with a big kiss, or will just come ask for a hug for no reason. She has a smile that lights up the room, and anyone who see’s it. For a three year old, she is very endearing. and anyone who meets her, becomes attached to her instantly

Barbies, Disney and all Things “Little Girl”

Rylee loves to be a little girl, Her favorite things are Barbie, Tangled, Disneyland and especially Mickey Mouse. She is also an amazing painter, and loves to paint and color pictures for the people she loves. She loves to dance, do art projects, play with her sisters makeup and loves to take LOTS of pictures!

Preschool

Rylee had just started Pre-school for the first time for only one month before she had got sick. From the very first day, she never cried, or did not want to be there. She misses her teacher, and all of her classmates and would love to go back as soon as she is healthy.

Her Family

She loves her family more than anything, except for her older sisters and brother, she loves them the most.

Rylee

Encouragement, Love and Support from Her Family and Others

Rylee always has us around her, encouraging her, telling her how much we truly love her. how very brave she is. and how special she is. I believe this has been the foundation of the inner strength she has. If you look at all of her pictures. most are with her siblings, and she is always so happy. She does get scared to go to treatment, and to have her port accessed, but as of Monday, her most recent treatment. she allowed them to access her in the playroom, and didn’t barely let out a whimper. Her most amazing attempt so far. She does not fight procedures or treatment, and is ready to take on the world! My daughter has inspired me to be the best person I can be. just for her sake.

“Rylee has taught me that a hug and a kiss mean so much to your loved ones, and it’s important to tell them how much you love them. She’s taught me not to be insecure about who I am, or how I look. it’s all in how you feel about yourself that matters. Her bravery through all of this shows me to never give up on anyone or on life, and to experience it with happiness and love in your heart. Most importantly, she’s taught me to help or take notice of anyone who is sad or down, and give them a hug and let them know its going to be ok”- Mommy Melissa

 

By |September 12th, 2013|Categories: General, NEGU Kid||Comments Off

My Beautiful Daughter Ava

Ava My Beautiful Daughter Ava
Shared by Ava’s Mommy, Gina

**Since writing this beautiful note about her daughter (below), Gina updated Ava’s Caringpage explaining that Ava’s hospital stay on Sept.4th was going to be her last planned hospital stay for this phase of her treatment. Having to travel back and forth to the hospital has been very difficult for Ava and her family, so they were very much looking forward to being home, as a family again.

“I cannot express how proud I am of Ava & my whole family! Watching Ava go through some pretty tough times in the hospital was not fun, and I was completely powerless in helping her at certain times. Through this I’ve watched her grow & become a stronger girl. She has been so positive, on her last night Ava made a big poster & hung it her window that said ‘Finding a Cure Begins with Hope’. I feel like now that she was able to get through this, she can get through anything! Her next phase starts in 2 weeks”. 

Below is Gina’s special note about her amazing daughter Ava

 

My daughter Ava has always been a healthy strong girl mentally & physically. Before she had cancer she played soccer, gymnastics, and did swimming. She is very social & was always planning things with her friends.

In February 2013 we noticed a bump on her head. Ava can play rough with her big brother so we just thought that she bumped her head while rough housing. After a week the bump wasn’t going away and it seemed to get bigger, I decided to take Ava to her doctor. Her doctor checked the bump & said it was simply a cyst & we should just leave it alone. No cause for alarm. She did tell us if it seemed to bother we could take her to a dermatologist & have them look at it. We decided we wanted it removed & we took her to the dermatologist, she said the same thing it was just a cyst & we can leave it alone. My husband & I pressed her to remove it. The doctor said she could do this in office numbing the area & it would only take a half an hour. This took three hours, at first I was able to stay with Ava in the office & I could tell the doctor was struggling to remove the so called cyst, she asked me to leave the room.

AvaThis was so difficult to watch my little girl go through. The doctor had the cyst tested & a couple of weeks later we got the results for some reason I had a bad feeling & I asked my husband to talk to the doctor while I waited in the waiting room with Ava. Once we got home we got Ava occupied & my husband told me in another room that Ava had Lymphoma. I’ve never seen my husband cry until that day. My heart sank & I was in complete shock.

We met with Ava’s oncologist on a Friday. Ava’s 9th birthday was on Saturday and she was able to have her birthday party. That Monday she was admitted into Children’s Hospital of Los Angeles. She had a port put into her chest & a lumbar punch with chemo. Since then she has had numerous hospital stays. Several lumbar punches with chemo. Many blood transfusions. She has gotten sick, lost her hair, had to stop going to school, and she can no longer leave the house because the risk of infection is too high. She has never complained.

She has kept my husband & I in good spirits with her great outlook. She plans on making crafts so she can sell them & raise money for children’s cancer. She’s always making crafts for her friends & family too. I’ve watched my daughter go from being a very active soccer girl to having to use a wheelchair. Currently I’m at Ava’s bedside at the hospital she’s getting a heavy dose of chemo thru her port plus 2 other chemo’s, and she is making a necklace for her friend. She feels terrible, but she has the most beautiful heart. She is absolutely beautiful inside & out. She’s my hero! Even during her toughest times she’s thinking of ways to help other kids.”

Please join us in sending Ava lots of notes of encouragement. As Ava says, “Finding a Cure Begins With Hope”. Let’s give Ava all the hope and encouragement she needs to beat this. Visit Ava at http://www.carepages.com/carepages/AvaRich

By |September 12th, 2013|Categories: General, NEGU Kid||Comments Off

Lyndsey, This is My Wish For You….

Lyndsey

My Dearest Lyndsey, This is My Wish For You…….

 

Dear Lyndsey:
I was recently asked what my wish for you would be, if I could choose from any wish. It’s seems a little too obvious a response to say, my wish is that you never have to go up against cancer again. It is a natural desire that any human being would want that for a child, so I am going to wish for something a little different:

My wish is that you will take this “limbo” year of doctor’s appointments, chemo treatments, medications, side effects, and all of the other yucky stuff that has come with it and continue to do brave bold things with even more passion than you did before. You are learning earlier than others that life is precious and all of the things we enjoy about it are not to be taken for granted. You’ve handled all that has happened to you with so much grace, courage, and strength. It has been amazing to watch you persevere and maintain what normalcy you can with great determination and sheer will. I am not surprised though because stubbornness, will and determination have long been ingrained in your nature. As you know, these are traits that have frustrated me at times, but at the same time I always knew they would serve you well later in life —- I really expected “later” to be when you were up and out on your own, but I am so glad now that you have these traits as you are using them well.

LyndseySo here is how I’m going to measure whether my wish for you is coming true — in the amount gray hairs on my head. As you get back to a more active life when treatment is finished, and the port is removed, I am counting on you to do even more amazing things on the soccer field than you used to, and go back to your goal of pulling more flags than any boy on the flag football field. I look forward to signing you up for the snowboarding lesson you were telling me you wanted to get to do. Gosh, I’m just looking forward to lifting all of the physical constraints you’ve had to live with, my athletic girl!

Now, while I realize the original question centered on only one wish–you know me, I never seem to run out of things to say, so of course this means I have more than one wish for you. The other is that you will make medulloblastoma a blip in the rear view mirror but not so much a blip that you forget about it. I hope you will find ways to give back to the community that has been so generous with our family and to help other kids whose lives are turned upside-down by cancer as yours has been this year.

I love you so very much!
Mom

Thank you to Lyndsey’s family for allowing us into their lives and for sharing their journey with us. If you would like to join us in sending notes of encouragement to Lyndsey, please visit her blog at http://lyndseydworkin.blogspot.com/. 

Lyndsey, we NEGU for you!

By |September 7th, 2013|Categories: General, NEGU Kid||Comments Off

Celebrate With Hailie!

Celebrate With Hailie- She is a Fighter, a Warrior and a Survivor!

HailiePlease join us in celebrating with 10-year old Hailie, who proudly announced on August 14th that she is CANCER FREE! Hailie’s mom and dad shared the great news with their fans and supporters,

As of today Hailie is no longer a cancer patient, she is a SURVIVOR! Hailie will have the ongoing hormone issues for the rest of her life, but she has won her fight! We are so proud of you Hailie! You kicked cancers butt!!! Congratulations!!! – love mom and dad

This month, Hailie is returning to many of the things she loves- her first day back to school, activities with her friends and so much more. Hailie came home from school this past week and thought about all of the other kids fighting cancer like her and the hundreds of them who wouldn’t get that same opportunity to return to school. That night, Hailie sat with her dad and said that she would like to do something to help kids fighting cancer. As a childhood cancer fighter and survivor, she knows just what kids need to be encouraged to Never Ever Give Up.

Hailie's Beads of Courage

Hailie courageously fought Germinoma (brain cancer surrounding the pituitary gland), for almost a year. Hailie was admitted into the hospital in January 2013. After a few MRI’s it was determined that Hailie had a brain tumor. Surgery soon followed in February and it was determined that the tumor completely surrounded Hailie’s pituitary gland, and mostly destroyed it. Hailie stayed in the hospital for 29 days and has since gone through 4 rounds of chemotherapy, each round she had to stay in the hospital for 3 days.

Throughout it all, Hailie never gave up, she kept going; kept fighting. Hailie continued to remind herself that she was much stronger than cancer; and that she was! Congratulations Hailie–you have the entire NEGU community behind you, celebrating with you. We send you so many wishes and prayers for the wonderful, joyful life you so deserve! Yay Hailie!!

If you would like to join us in sending Hailie tons of notes of encouragement and joy, please visit her at Go Hailie

Also watch this special video of Hailie’s journey, put together by her dad..tears of joy

By |September 6th, 2013|Categories: Be Their Support, General, NEGU Kid||Comments Off

We NEGU for Kayla!

kayla-13NEGU Kid of the Week–Kayla!!

This week, we have a special little girl to introduce to Jessie’s fans and followers. Kayla, our NEGU kid of the week,  is a very happy, active and fun-loving 3-year old. Kayla has been courageously fighting Acute Lymphoblastic Leukemia for over a year. Kayla has maintained such strength and courageous this year, and is always seen wearing a big smile–even through her most difficult treatments

.Kayla

 

 

“Kayla has inspired me to keep fighting regardless of the situation. Her strength and courage has increased my faith in God by seeing her happy and smiling almost all of the time regardless of how she feels. I feel like, with the help of God, I can conquer any situation that I’m faced with because of the strength I see in her as she fights cancer”- Kayla’s mom

Kayla loves playing with her big brother, Christian, going to the park and jumping on the trampoline. Kayla also enjoys being read to and spending quality time with mommy and daddy and her grandmother, Mimi.

Team NEGU, today, let’s be Kayla’s support. Join us in heading over to Kayla’s support page and leaving her special notes of encouragement to let her know that she has a world of support behind her. https://www.facebook.com/SupportTheCauseTheYearwoodFamily

Kayla, we NEGU for you!

 

By |September 3rd, 2013|Categories: General, NEGU Kid||Comments Off

My Dearest Sophie–This is Our Wish For You

Sophie, This Is Our Wish For You….

Love, Mommy and Daddy

My Dearest Sophie,Sophie--this is my wish for you
My whole life I have dreamt of the day that I would have you. Wondering what you would look like, how your soft skin would feel, what you’d grow up to be. I tried to imagine you, me and daddy playing and kissing and cuddling, and traveling the world together. And now here you are! More beautiful than we could have ever imagined. You have a smile that literally lights up the room, and everyone that encounters you falls completely in love with your sweet spirit. It’s literally like God hand picked the most amazing qualities a baby could have and gave them all to you! You are a blessing and just exude pure joy.

SophieThe day daddy and I learned you had cancer our worlds collapsed. It was like experiencing a death every day, over and over again for the first three days, and there were a lot of “Why Us” moments. How could our perfectly healthy baby have a tumor inside her tiny baby brain? You had only ever had one cold in your 8 1/2 months of life! But after those 3 days went by we picked ourselves up, and realized that it wasn’t about us…it was about you! We had to find a way to get you better and we searched day and night for answers.

And now here we are! It’s been two months and it seems like two years. You continue to inspire us every single day by how much you continue to evolve. By how easily you laugh, and love. Your smile continues to melt everyone that comes in your path, and the symptoms your tumor has been causing are practically gone! We are on a mission my precious girl, and we vow to do everything in our power to get that tumor out of your brain for good! We will fight for you with every ounce of energy we posses. We are warriors for you sweet girl! You WILL have the life that we have always dreamt of for you, and we will stop at NOTHING to see that happen.

You see Sophie, God gave you to us for a reason. You have a message my baby girl, and we are simply your messengers. You have already helped so many other children and you don’t even know it. You have touched people all around the globe, and you have people praying for you from all 4 corners of the Earth…literally! You have become a vision of hope, and have brought out the very best in people. You are an inspiration, a gift to this world, and especially a gift to daddy and I. I couldn’t imagine having any other baby in the world but you! You ARE my dream come true, and caring for you has been nothing short of a pleasure. I was born to be your mommy and daddy was born to be your daddy, and we will win this war on cancer together!

Sophie…you have our whole hearts baby girl. We will never, ever give up! We will stand by your side every step of the way, and we’ll go to the ends of the world to make you well.

Mommy and daddy love you…xoxoxo

Please join us in being Sophie’s support at Prayers for Sophie. And thank you to Sophie’s family for opening up their lives and their hearts to our NEGU community.

By |September 1st, 2013|Categories: Be Their Support, General, NEGU Kid||Comments Off