Northern Nevada Children's Cancer Foundation
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Braden
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Tell us about your warrior and their journey: 

Braden is a shy but outgoing kiddo who loves to play video games on his Xbox with his cousin Noah in Arkansas, He loves to Skateboard and do tricks, and Play Pokémon GO.

At age 14, Braden was diagnosed with stage 2 nodular lymphocyte predominant hodgkins lymphoma on April 3rd, 2024.
On March 1st, Braden was taken to Fernley Renown Urgent Care for concerns about 2 large, non-painful swollen lymph nodes on his neck. Dr. Hall was very concerned and had blood drawn, which sent us to Reno for an Ultrasound that day. The Ultrasound, however, didn’t give clear results, so a CT scan with contrast was done the next day.
CT scan results weren’t clear either, so we were then Referred to Dr.Zucker with Renown Children’s Pediatric Hematology/Oncology. Braden then had a core biopsy done on March 14th, which actually came back negative for cancer. However, Dr.Zucker (Thankfully) said he wasn’t happy with that answer and suggested we take out one of the large lymph nodes and have it biopsied. So on April 2nd, Braden went in for his 2nd surgery and had a 6cm lymph node removed for testing, which unfortunately was malignant. We were informed Braden would need 3 cycles of Chemo. Braden has taken chemo so well and taken the news so well. We are so proud of him. He still has his bad days, and life has definitely changed for our family.

How has NNCCF impacted your family’s journey? 

NNCCF has been so wonderful to our family; they didn’t even know us but took us under their wing and made us part of their family. We are forever grateful that we were told to contact them. From making our kiddo smile and showering him with gifts and love, to helping with medical bills, we cannot thank them enough. They truly make you feel loved and never judged.

Meet Zane, our #WarriorWednesday! After unexplained vomiting and weakness led to a pineoblastoma diagnosis, Zane has faced multiple brain surgeries, radiation, and chemotherapy. Despite it all, Zane remains a bright light, spreading joy and smiles wherever he goes. His strength and positivity are truly inspiring.  Read more about his story as told by his mom below:

Tell us about your warrior and their journey: 

What started out as what we thought was unexplained vomiting turned into unexplained weakness, which in the end turned out to be Pineoblastoma.
On October 5th, we came into the ER at Renown and then were life-flighted out to Utah. We got to the ER doctor for a CT Scan and found a large tumor on his third ventricle. Within 2 weeks, he had 3 brain surgeries and another 1 by the end of the month. We then got the news from pathology that he also has the rare gene malformation called Dicer1, which is something that puts him at higher risk for multiple forms of cancer. We ended up testing his siblings and mother and found that they, too, have the gene.
Zane then went under 6 weeks of proton radiation and is now in the process of 6 months of chemotherapy. He is a ray of sunshine through all of this. He is a true warrior. He can brighten up every room he walks into. Even though he has had to undergo multiple surgeries and transfusions and has lost all of his hair and lots of weight, he still walks around with a big smile on his face, which is absolutely contagious.

How has NNCCF impacted your family’s journey?

Thanks to NNCCF, our family has been able to keep our focus on Zane and his needs and truly enjoy every moment with him. Without their help, I’m not sure how we would have gotten this far.

Is there anything you would like to add?

I want to thank everyone who has helped and supported my son and our family through all of this. I know we are nowhere done with this nightmare, but to have the amount of support we have by our side is absolutely incredible and much appreciated.

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!

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.

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.

From diagnosis to victory: Haley’s battle with Burkitt’s Lymphoma at 17 was a journey of courage and resilience. Supported by NNCCF, she triumphed over surgeries, chemo, and setbacks. Today, as a pediatric oncology nurse, she’s a fierce advocate for young cancer warriors while inspiring strength and determination through sharing her own journey.

Tell us about your journey

“I was diagnosed with Burkitt’s Lymphoma in 2015 at the age of 17, right before the start of my senior year in high school. I was treated at UCSF Benioff Children’s Hospital, away from home, and had to be careflighted there a few times. I had a tumor on my intestines and had to have an initial surgery to remove the tumor. Due to the tumor being larger than they originally thought, I ended up having to have an ostomy bag in order to give my intestines time to heal. I had 5 rounds of chemotherapy at UCSF but was hospitalized many times in Reno in between treatments due to complications, including neutropenic fevers and seizures. After 6 months of chemo, multiple surgeries, having to be in a wheelchair due to being so weak, and having multiple seizures, I was told I was cancer-free! Today, I still have long-term side effects from the treatment I received.
While going through treatment, I appreciated everything that my nurses did for my family and me. I also became extremely passionate about advocating for childhood cancer. Today, I am a pediatric nurse at Renown and absolutely love taking care of pediatric oncology patients, sharing my story with them, and being able to relate to them on a deeper level.”

How has NNCCF impacted your journey?

“NNCCF has been there for me and my family both emotionally and financially. Throughout treatment, they were able to help pay for medical bills, as well as travel expenses for having to be treated out of town. They also always welcomed us with open arms whenever we needed someone to talk to or a shoulder to cry on. Throughout college, I received the Inspire Scholarship, which helped me achieve my goals of getting a nursing degree and getting my dream job as a pediatric oncology nurse. To this day, I still feel so welcome around everyone at NNCCF, and I know that whenever I need them, they are there for my family and me. NNCCF has also helped me connect with other young adult cancer survivors and fighters and helped me to make new, amazing friends. The cancer community is not one anybody would ever want to be part of, but NNCCF helps to make it a great community and family.”

Bailey is a fiercely strong warrior who, at just five years old, was considered a 4-time survivor of Neuroblastoma.  Now, at 25 years old, he is graduating from Colorado State University!  His story is nothing short of miraculous!  His mom shared his journey with us below:

Tell us about your warrior and their journey

My son, Bailey, was diagnosed at 9 months of age on December 29, 1999, with Stage IV Neuroblastoma, n-myc non-amplied, favorable histology. We were told not to expect him to live through the night because of the extent of his disease and if he somehow survived the night, that he would be paralyzed from the primary tumor compressing his spine and he certainly would never see his first birthday. At diagnosis he had a tumor on his left skull, a tumor behind his right eye, the primary tumor in his chest wrapped around his aorta and compressing his spine, hundreds of tumors in his liver (his liver was so large the original biopsy scar is on the left side of his abdomen), a tumor on his left shin and full bone marrow involvement. He survived that first night at UCSF and was treated at that time as intermediate risk because of his age with 8 rounds of chemo, surgery and inter-operative radiation. He was No Evidence of Disease (NED) for 7 months and relapsed. He was then treated as high risk and did another 6 rounds of chemo, bone marrow transplant and stem cell transplant, external beam radiation, followed by 6 months of Accutane. He was NED before his bmt and sct, then 10 months after completing Accutane had another surgery to remove what was determined through pathology to be a ganglioneuroma on his left lung. He then was NED for 10 more months, when a new tumor showed up behind his liver. We were told by surgeons at both UCSF (Dr. Farmer) and MSKCC (Dr. LaQuaglia) that it was inoperable and the best they could do was try to biopsy to see what it was. Our amazing surgeon at UCSF (Dr. Farmer) ended up being able to remove the ENTIRE mass on 1.16.04 and Bailey started 2 years of Accutane. The mass was 98% ganglioneuroma and 2% neuroblastoma. He completed the 2-year course of Accutane in February of 2006. So, at the age of 5, he was considered a 4-time survivor of Neuroblastoma! On February 11, 2009, Bailey had his LAST MIBG Scan – 5 years after his last surgery and 3 years since finishing treatment! He is now 18 years since his last treatment, 25 years old, and will graduate on May 11, 2024 from Colorado State University with a Bachelors Degree in Human Development and Family Sciences. He has worked closely with Coach Matt Mumme for both the Nevada football team, and now the Colorado State football team as an assistant for the past 8 years and hopes to continue working in the sports field after graduation.

How has NNCCF impacted your family’s journey?

NNCCF (KRM and Angel’s Kiss) have been a part of our family’s journey for almost all of Bailey’s years of treatment and post-treatment long term affects. We could not have made it through this journey without the never-ending support of such an amazing organization.

NNCCF will always hold a very special place in all of our hearts! Their amazing support of our local community is like no other! Northern Nevada is very fortunate to have such an amazing organization to support local families through their worst times. Then, they continue to be there as these warriors beat their battles with financial support to help them succeed in college! Not only were they there for us during the worst of times, they’ve continued to be there for Bailey throughout his college career with continued financial support via scholarship.

Victoria was diagnosed with leukemia when she was 15 years old. Throughout her cancer journey, Victoria’s motivation and commitment to her education did not waver. Last December, Victoria graduated from the University of Nevada with a Bachelor of Science dual degree in Human Development & Family Science and Biology with a minor in Developmental Disabilities. Her dedication to working with individuals with disabilities stems from her own long-term side effects from treatment. Victoria remarked that her scholarship helped her succeed both in education and in life, stating “As a kid with cancer, I never would have imagined I would be living in my own apartment with two degrees. NNCCF helped with my tuition throughout my educational journey and gave me the confidence to pursue my many educational goals”.



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