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!

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.

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.”

We are excited to introduce our Inaugural Community Member of the Month, Dr. Robin White.  She is an integral member of our Board of Directors and a renowned pediatrician in northern Nevada!   We are grateful for her guidance and honored to spotlight her commitment to northern Nevada’s youngest cancer warriors!

How did you first get connected with NNCCF?

I was serving on the Board of Angel Kiss Foundation prior to their merger with Keaton Raphael Memorial Foundation. Since the mission of NNCCF was the same as Angel Kiss, I wanted to help grow this new foundation in any way I could.

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

During the course of my career, I have diagnosed several patients with the emperor of all maladies—cancer. I then turn them over to a pediatric oncology colleague with much more training and experience than I for their treatment, watching helplessly as they and their families endure the battle and hopefully win the war. Being on the NNCCF Board enables me to engage in the battle, as well as to work towards a future cure by supporting childhood cancer research. Giving it back and paying it forward brings great joy simply because there is no joy without giving.

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

This question is difficult for me to answer. I am very proud of the unprecented growth of NNCCF over the last 20 plus years and by association I am able to celebrate this success. I have great admiration for our NNCCF staff who work tirelessly supporting our child warriors and their families and by association I am deeply humbled by their dedication and fortitude. My participation is but a very small part of the ongoing work of the entire foundation, so my pride is not generated by any one thing I have done, but rather what our foundation has done to relieve a small part of the burden shouldered by the families we serve.

If you could meet anyone, past or present, who would you meet and why?

I would want to meet Abraham Lincoln, the 16th President of the United States of America. According to W.E.B. Du Bois, “I love him not because he was perfect but because he was not and yet triumphed.” Lincoln’s character has been described as his integrity in the longest sense of that term—his devotion to truth and justice and freedom in every department of human life and under every temptation. He was far from a perfect individual, as are we all. However, he learned from his mistakes and learned how to compensate for his own personal shortcomings. He believed to his core that people deserved equal treatment. Through constant practice and diligent effort, he treated others whom he encountered with honesty, humility, courage, justice and grace. I can only hope to barely approach these characteristics of this great human being.

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”.

Loukas loves Star Wars, coloring, drawing, playing outside with his brothers, having Nerf wars, and karate. In 2019 he was diagnosed with osteosarcoma at the age of four. Upon diagnosis, he was no longer able to attend preschool, instead, he and his family were forced to face this difficult diagnosis and treatment. Luckily, he has incredibly loving and supportive parents as well as two older brothers who are helping him every step of the way. After surgery and a difficult treatment regime, this little padawan was cancer-free for almost two and a half years then sadly relapsed in mid 2023. Now at eight years old, he continues to battle cancer courageously. But Loukas is a true fighter, and the force is strong with this one!

Corrine is a beautiful and brave warrior who was diagnosed with Hodgkin’s Lymphoma at the start of her freshman year of college.  While it may have turned her world upside down, Corrine is as strong as they come and is battling her diagnosis with grace and ferocity. Learn about Corrine’s journey in her own words:

Tell us about your journey:

My journey was very difficult because I had just moved into my dorm at the University of Arizona. Far away from my family and on my own. Once I realized I was really sick and needed to get checked out, it all started. I was sent to the emergency room and stayed there for a week with the company of my mom. This is where I found out my diagnosis of Hodgkin’s lymphoma. I was devastated and heartbroken. I then had one day to clean out my dorm and headed to renown the next day. I found out it was stage three and I would have to go through 6 months of chemotherapy, 12 rounds total. I thought chemo would be the hardest part of my journey, but the hardest part was losing my long hair and seeing everyone be able to live their lives in college while mine was put on hold. I had to learn to be able to focus on getting better and not focus on other people’s lives. These last four rounds of chemo I’ve had were some of the toughest. Taking an emotional toll on my body. But I’m so thankful to be feeling better and praying that my latest scan is clear.

How has NNCCF impacted your family’s journey?

NNCCF has impacted my family’s journey by allowing my mom to feel like there is a shoulder she can always lean on for help. They have helped my mom immensely by helping her anytime she is struggling emotionally or financially. What they have done for me is something I will never be able to thank them enough for. My two beautiful wigs. Hair has always been a big part of me, and I would’ve never imagined losing it. But sadly, I did, and it was one of the biggest challenges I’ll ever have to go through. Thanks to NNCCF they noticed how much I was struggling feeling uncomfortable being bald and they made an appointment for me to get my wigs. It was one of the best days of my life and an awesome experience. I got to try on different sizes, some with bangs, some without, and many different colors. They made me feel beautiful and confident again, and I can’t thank them enough. NNCCF is now my family and will forever be my family.