Northern Nevada Children's Cancer Foundation
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On this #WarriorWednesday we’re celebrating Jayme! Jayme was diagnosed in November 2023 with a brain tumor and underwent a 13-hour debulking surgery on February 13, 2024, where she was sedated until the afternoon of the 14th. She is the first documented case of this type of growth in this location from what the team of doctors told her and her family. The unknowns of how this will continue to affect her life are daunting, but this warrior is fighting with everything she has.

Tell us about your warrior and their journey: 
Jayme was diagnosed with a substantial giant cell tumor of the clival in November 2023. She underwent a 13 hour debulking surgery on February 13, 2024 and was sedated until the afternoon of the 14th. They were able to remove 75% of the tumor. The remaining 25% has various crucial nerves that control breathing, swallowing, eye sight and tongue movements encased in it. Jayme is still having issues with her back from the compression at the stop of her spine and still has extreme headaches and dizziness at times. We are also dealing with anxiety and depression. Part of the area in the brain that controls emotion was extremely compressed given the size of Bob the blob. We are working with her team both at UCSF and here in Reno/Carson City to get the right medications to help with this. We also found her right vocal cord in paralyzed and will more than likely never function correctly.

Jayme is the first documented case of this type of growth in this location from what the team of doctors told us just before her surgery. The unknowns of how this will continue to affect her, probably for the rest of her life is daunting, but this warrior is fighting with everything she has. Because she is the first case, no one knows what to except, but we did get some good news this passed weekend. Her MRI on September 8th showed a slight decrease in size. BOB THE BLOB is getting smaller!!!! This doesn’t mean it will continue to shrink and it’s still possible for it to grow. Waiting to find out how often scans will take place to track its movement. Hoping the copper coil they placed to stop the blood flow to the growth will help it continue to shrink or at least remain the same.

How has NNCCF impacted your family’s journey?
The continued support has helped us at every turn. Whether it be a family event or just cheering her on through emails brings a smile to her face.

Is there anything you would like to add?
Thank you to our family, friends, and teachers who have been there for us and work with us. I never truly understood “It takes a village” until we were faced with this. Thank you to our village. You guys ROCK!!!!

Meet Benjamin, a strong little boy who was diagnosed with ALL in June of 2023. Prior to his diagnosis, Benjamin enjoyed playing baseball and lots of outdoor activities, but has since developed a passion for video gaming and Lego sets. He is proud of how far he has come through his cancer journey — one of the things he looks forward to after treatment is over, is bringing his port to school for show and tell, once it’s removed. Read our interview with Benjamin’s mom below:

Tell us about your warrior and their journey: 
Ben was diagnosed in June of 2023 with b-cell ALL. This came of course as quite a shock. Prior to his diagnosis, Ben enjoyed playing baseball and lots of outdoor activities. Since being diagnosed and having to be more cautious of injury, he has developed a passion for video gaming and building Lego sets. Occasionally we look back at pictures we’ve taken so far on this journey, to show him how much progress he has made and you can see that he is proud of himself. He tells us how strong he is and how much he has been through and how he can’t wait for all of this to be over.

How has NNCCF impacted your family’s journey?
NNCCF has helped our family immensely with holidays and eased the stress of regular life. As a family we love that we are always welcomed there with a warm smile and a friendly atmosphere.

Is there anything you would like to add?
One of the things Ben looks forward to after treatment is over, is bringing his port to school for show and tell, once it’s removed (since he’s now grown comfortable with his battle scar).

On this #WarriorWednesday we’re celebrating Rosemarie! This fierce little girl was diagnosed when she was just two and a half years old where she was taken to UCSF in Oakland via helicopter. Rosemarie stayed in the hospital for roughly a month to begin her treatment journey. Through the ups and downs of treatment, she has been a strong fighter with her baby doll right by her side. Read our interview with Rosemarie’s mom below:

Tell us about your warrior and their journey: 
Rosemarie was diagnosed when she was just two and a half years old where we were taken to UCSF in Oakland via helicopter. We stayed in the hospital for roughly a month to begin her treatment journey. Through ups and downs as well multiple hospital visits she has always had a baby doll near her and been our strong, fierce little girl!

How has NNCCF impacted your family’s journey?
We have been able to feel like we are part of a community as well as be able to experience events we didn’t think would be possible during a tough situation, such as movies! We have been able to be less stressed, and ALWAYS feel cared for anytime we are around a member of NNCCF.

Is there anything you would like to add?
She loves Disney princesses! She has always been fierce.

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.

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.”



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