Northern Nevada Children's Cancer Foundation
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3550 Barron Way #9a • Reno, Nevada 89511
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Jully
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Meet Jully, a brave 4-year-old little girl who was recently diagnosed with myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML).  She has been at Renown since the day of her diagnosis, where her brave mother has not left her side while waiting to be transferred to a specialty center for a bone marrow transplant.  Read more about her story as told by her mother here:

Tell us about your warrior and their journey: 

Jully is our brave 4-year-old little girl and definitely the toughest 4-year-old I know. She was diagnosed with Myelodysplastic Syndrome (MDS) & Acute Myeloid Leukemia (AML).
We were at a routine dentist appointment to replace Jully’s spacer and remove a previously missed root. I had her put under Anesthesia, and when the anesthesiologist started to remove Jully’s breathing tube, her nose started bleeding and would not stop. We were then rushed to Renown Emergency, where we were told that the reason Jully wouldn’t stop bleeding was because she had anemia and then was diagnosed with MDS/AML. Since that day on March 29, 2024, we have not left the hospital and have now been here at Renown pediatric oncology for 38 days and counting.
I have since had to go on unpaid leave with my job, and my daughter and I have not been home since. She has definitely been a trooper going through 5 blood transfusions and 4 platelets transfusions. She has also had a chemotherapy port installed in her chest and neck. She has undergone 10 days of intensive chemotherapy, where she ended up losing the majority of her hair and a few other side effects like less energy and some nausea. Still, other than that, nothing stops this little girl from enjoying her life on a daily basis.
We are now waiting to be transferred to Stanford Medical, where Jully has to undergo a Bone Marrow transplant that will hopefully help her fight off the leukemia for good.
She has definitely livened up the place on the 4th floor of the Renown Pediatric Oncology department. She has become a patient favorite of some of the Doctors and Nurses here.
I would also like to add that if it was not for the WONDERFUL CHILD LIFE DEPARTMENT’s various activities and just being a person to talk to and vent about this entire process, I know our stay for these 38 days would not have been as painless as it has been going through something like this.
We are so thankful to all the DOCTORS, NURSES, CNA, and CHILD LIFE STAFF here at Renown; you have no idea how truly amazing you are.

THANK YOU!

How has NNCCF impacted your family’s journey?

Oh goodness, what is there not to love about NNCCF, ever since the moment I talked with your foundation on the phone, I have had a huge weight lifted off of my shoulders. I was the only parent working in the household when all of this happened. When I found out I was not being paid even though I was on an emergency medical leave, I was stressing so hard about how to take care of my family’s rent, our car insurance, phone bill, and just various costs for being here in the hospital. I honestly didn’t know what to do, and all I could do was pray and leave it to God and when your foundation approved us for help with bills throughout Jully’s treatment, just writing this now it brings tears to my eyes, your foundation truly is a GODSEND because without you it would have been 10 times harder in this entire process and because of NNCCF you all have given my family hope to focus on what’s truly important and that is Jully’s care.
I can’t thank you enough from the bottom of my heart!

 

 

Meet Tucker, a brave little boy who was diagnosed with a rare brain tumor condition at 5 years old.  Two years later, Tuckers still bravely continues to fight with his fierce mama by his side!  Read about his journey as told by his mom below:

Tell us about your warrior and their journey: 

Tucker was 5 years old when we took him to the local ER because he was complaining of “seeing copies.” An MRI discovered a brain tumor. We were taken by ambulance to Lucille Packard in Palo Alto, Ca. where he underwent emergency brain surgery. While there, another MRI revealed 2 more brain tumors located on his vestibular nerves. We were told that having these tumors on each hearing nerve is a hallmark sign of a rare tumor predisposition disorder called NF2. Genetic testing later confirmed this diagnosis. Since diagnosis, many more tumors have been discovered in Tucker’s brain and spine. Now, in 2024, Tucker’s doctors are concerned that he has accumulated too many tumors that have caused too many symptoms to “wait and watch” anymore. We will be going to the Bay in late May to discuss the treatment they think would benefit him. NF2 is caused by a mutation in a tumor suppressor gene, causing patients to accumulate more and more tumors throughout their lives. These tumors mostly affect nerves in the brain and the spine, causing eventual deafness in all patients, and depending on the individual, can cause blindness, seizures, paralysis, and more. NF2 manifests in ways that are different than we typically think of when talking about oncologic conditions, as fighting NF2 is more of a “marathon” than a “sprint”. The tumors are slow-growing, but individual circumstances can cause malignant growth. However, the mutation is encoded in the person’s DNA, meaning there is no “remission” for individuals affected. Tucker understands as much about his condition as a (now) 7-year-old can, but he never lets it bring him down. He is so bright and full of energy! He loves to play outside with his friends, hang out with his cousins, bake with his big sister, and read and snuggle with me (mom). He likes to play video games, skateboard (he’s really good!) and be silly. There’s never a dull moment when he’s around! He brings so much love and laughter to those around him, and he will continue to do so as he fights to bring awareness to CURE this cruel disease!

How has NNCCF impacted your family’s journey? 

NNCCF has been such a blessing to our lives by helping us to afford our crazy travel expenses! We love our Sparks/Reno area, but unfortunately, we do not have doctors here who specialize in his condition to treat and monitor his tumor growth. We need to travel out of state every three months just for monitoring. This is not even counting the numerous times we’ve had to travel under urgent circumstances. Thank you, NNCCF!

Zoe is again wild and free. The way she is meant to be.
She passed away today, March 5th, at 3:15 this morning on her birthday. She was 12.
Zoe had requested that instead of birthday presents that people donate to the Northern Nevada Children’s Cancer Foundation. Zoe loved the staff there and they were such a gift to her. She would shine her beautiful smile and brightened everyone’s day!

Please help us in making Zoe’s wishes come true and donate. Northern Nevada Children’s Cancer Foundation (NNCCF) is the only organization solely dedicated to supporting children with cancer in northern Nevada. The impact they are able to make both financially and emotionally are huge, we aren’t sure how we could have done this without them.

Hello friends,
For my birthday this year I am asking for donations for Northern Nevada Children’s Cancer Foundation (NNCCF) in memory of my beautiful daughter Haley.  The pain of her loss is with me every single day and it’s terrible that others have to go through this too.  NNCCF is there for families in a big way, and their support meant so much to Haley and our family.  Haley always wanted to help kids with cancer, and supporting NNCCF means that she can fulfill her mission.  Thanks for keeping Haley’s memory alive, and thanks for anything you can contribute!

For my birthday I hope to help other families that are going through hell like my daughter and her family are with their baby. Little Mica isn’t even 2 years old and she’s spent as much time in the hospital as out. She’s beaten 2 brain tumors just to find another tumor in her spine. She’s suffered through the loss of her hearing, her ability to talk, facial paralysis and so much more.

The family is strong, but I can’t imagine any family going through this.

This month, we’re thrilled to shine a spotlight on a remarkable woman for our Community Member of the Month. Lynn embodies the essence of fostering community within the realm of childhood cancer. She stands as a fierce advocate for childhood cancer awareness and a steadfast source of support for parents of young warriors across the nation. To know Lynn is to experience love, encouragement, and resilience firsthand. We are immensely thankful for her invaluable presence within the NNCCF family. Dive deeper into Lynn’s inspiring journey with NNCCF below:

How did you first get connected with NNCCF?

My daughter, Katie, was diagnosed with Ewing’s Sarcoma, a rare childhood cancer, when she was 17 years old. She has been fighting for 5 years, having relapsed 3 times. It has been the hardest thing watching your child fight for her life. It’s a daily physical and emotional challenge to live with childhood cancer. Having NNCCF in our corner has lightened that burden.

What is your NNCCF “why”?  What makes you want to continue supporting NNCCF?

Of course, my daughter, Katie, is my number one “why” for supporting NNCCF. Sadly, there are so many kids like Katie; kids fighting cancer. I wish every community had an organization like NNCCF. I’ve met too many families throughout the country who, because of childhood cancer, are struggling not only physically and emotionally but also financially. Because of NNCCF, families fighting childhood cancer in Northern Nevada can focus on their child’s health and happiness without the constant worry and stress of medical bills. We constantly say that NNCCF is “The biggest little Nonprofit in the biggest little city.” There is no red tape or layers of bureaucracy at NNCCF, only family.

What is one thing you’ve done for NNCCF that you’re proud of?

Beads of Courage is a national organization that helps children visually display their cancer journey. The child receives a different colored bead for each and every appointment, poke, procedure, etc. A red bead is given for blood transfusions, a white bead for chemotherapy, a black bead for a shot or port access. I have been stringing Katie’s beads for over 5 years now. I have been bringing Katie’s long strands of Beads to different NNCCF functions. I think it gives people a glimpse into the length and depth of not only Katie’s battle but to the battle of the kids fighting cancer.

Is there anything you would like to add?

Breast cancer, sadly, is a very common secondary cancer with which kids with cancer are diagnosed. But, I’d like to see awareness of childhood cancer and GOLD be as prevalent and known as PINK is for breast cancer.

Conozcan a Darey, un valiente guerrero en su segundo año de tratamiento por un tumor cerebral. A lo largo de este difícil tratamiento, Darey ha mantenido una actitud positiva, trayendo alegría a su familia. Lea más sobre su viaje aquí:

Cuéntanos acerca de tu guerrero y su experiencia.

A sido un golpe muy fuerte para Darey y para toda la familia no a sido facil estos 2 años con esta enfermedad pero gracias a Dios Darey a sido muy fuerte y a seguido su vida siendo feliz y eso nos alegra y estamos muy orgullosos de Darey ♥️

Cómo ha impactado NNCCF en esta experiencia de tu familia?

A sido de gran ayuda yegaron en el momento mas difícil de nuestras vidas y nos an ayudado muchísimo económicamente an estado en todo ,momento para ayudarnos para cualquier pregunta , preocupación q tengamos nos an ayudado estamos muy agradecidos con todos gracias

 

Meet Darey, a brave warrior in his second year of treatment for a brain tumor. Throughout this difficult treatment, Darey has remained positive, bringing joy to his family. Read more about his journey below!

Tell us about your warrior and their journey:

It has been a very tough challenge for Darey and for the whole family. These past 2 years with this illness haven’t been easy, but thanks to God, Darey has been very strong and has continued living happily, which brings us joy. We are very proud of Darey. ♥️

How has NNCCF impacted your family’s journey?

NNCCF has been a tremendous support; they arrived at the most difficult moment of our lives and have helped us immensely financially. They have been there at every moment to assist us with any questions or concerns we have had.

We are very grateful to everyone. Thank you.

Meet Jeremiah, a courageous fighter whose journey with Acute Myeloid Leukemia led him to discover strength he never knew he had. With NNCCF’s unwavering support, Jeremiah continues to face each challenge with resilience and hope. Jeremiah tells us about his journey below:

Tell us about your journey:

July 3rd, 2023 I was diagnosed with Acute Myeloid Leukemia. I didn’t know the severity at first but soon found that it was much more serious than I could have imagined. For a time, I was suffering form Acute Renal Failure, Disseminated Intravascular Coagulation, and several other things. Once these were explained to me, I realized just how beautiful life was and how thankful I am to still be here.

How has NNCCF impacted your family’s journey?

NNCCF Has helped me and my family throughout this trial in my life in ways they could never imagine. From helping with bills and household items, to mental health support and introducing me to others that have gone through similar things that I have. All in all NNCCF has made things astronomically easier on me during this time period of my life. I will forever be grateful.

Join us for a special restaurant takeover! Help raise funds for Northern Nevada Children’s Cancer Foundation while enjoying delicious comfort food served to you by the men and women of North Lyon Fire. Bring your loved ones to Black Bear Diner at 1190 E Main Street Ste b in Fernley, on Wednesday April 24th from 5pm to 8pm, for an evening of community support and making a difference in the lives of children battling cancer in Northern Nevada.

Meet Jayme, a true warrior in her battle against ‘Bob the Blob’.  Despite facing unimaginable challenges – from crippling migraines to a rare tumor – Jayme’s resilience shines through. With the incredible support of UCSF neurosurgeons, the NNCCF community, and the steadfast love of her family, she’s faced each hurdle head-on. Though the journey ahead is uncertain, Jayme’s determination to fight until a cure is found is unwavering.  Read about her story as told by her parents below:

Tell us about your journey:

Jayme has suffered and was being treated for migraines for about 3 1/2 years. On 11/27/2023, Jayme had an MRI of her head, and within three hours, we were told she had a massive tumor, which Jayme named “Bob the Blob.” UCSF neurosurgeons got involved immediately, and on December 18, 2023, Jayme underwent a biopsy. It was determined that she has a Keratin Positive Giant Cell tumor of the Clival bone in her skull. She is suffering from horrible migraines, loss of voice, and loss of balance. In January, we spent 2 1/2 weeks at Renown Hospital trying to get the pain under control. She had a blood vessel feeding the tumor embolized on February 12, 2024, and underwent a 13-hour surgery on February 13, 2024. She was left sedated under general anesthesia until February 14th, and 30 hours after her surgery started, she woke up. We found out before the debulking surgery that she is the first reported case of this type of tumor in this location. They were able to remove 75 to 80% of the tumor, but she is left with 20 to 25%, which they are unable to remove. The Doctors are unsure of what will happen now. The tumor does not respond to typical chemotherapy or radiation, and there is no cure for the remaining cancer. She will continue to fight this until a cure can be found. She will undergo scans every six months to see if the tumor has continued to grow, as well as a yearly scan to see if it is metastasizing to other locations within her body. There may be additional surgeries and possible therapies to try and remove the balance of the tumor.

How has NNCCF impacted your family’s journey?

Without NNCCF’s continued support, it would have taken a toll on our ability to continue to be present through Jayme’s hospital stays, surgeries, and recovery.

The events they have held have given Jayme the opportunity to connect with other warriors, hear their battles, and see them conquer this horrible diagnosis of childhood cancer and see the light at the end of the tunnel.

Please add anything else you would like us to include in your warrior feature

Jayme has been strong and courageous since her diagnosis and understands this is not the end of her battle.



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3550 Barron Way #9a Reno, Nevada 89511
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