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- Advocacy | ASK Childhood Cancer Foundation
Advocate for childhood cancer awareness in Virginia. Join us in spreading the word and helping create legislative change for young patients, survivors and their families. in Virginia ADVOCACY IN VIRGINIA We need your help in advocating for children with cancer and their families across the state! Whether your family has been impacted by childhood cancer firsthand, or you just have a big heart, we are always looking for more advocates to help spread awareness and lend their voice to the cause. Why is Advocacy Important? Approximately 1 in every 300 children will be diagnosed with cancer before their 20th birthday. Share on social media > Two-thirds of all childhood cancer survivors develop late effects from treatment that make it harder to learn and thrive. Share on social media > On average, more than 350 children across Virginia's communities are diagnosed with cancer each year. Share on social media > Advocacy Social Share Join Our Advocate Community Join ASK's Advocate Community It is vital that children with cancer receive the support that they need to ensure a brighter, healthier future. Since we started on this path in 2018, our advocacy efforts have grown from just a few voices into an inspiring community of advocates from across Virginia. Our goal is to educate and engage our elected officials to champion policies and programs that will improve the lives of children with cancer across our state. Your insight on the impact of childhood cancer helps elected officials understand why support is a MUST for our kids. Join us! Become an Advocate Sign up for advocacy emails and receive updates on childhood cancer issues and advocacy efforts in Virginia, and an invitation to participate in Virginia’s Childhood Cancer Advocacy Day. Our Success Thanks to the tireless efforts of our advocates across the state, children with cancer were included in the 2022 state budget for the first time in Virginia’s history. Our collective work resulted in a new education support navigator program at each of the Commonwealth’s five primary pediatric cancer treatment centers. These navigators are serving as a bridge between a child’s medical and school teams, helping them get back to school with the support that they need to be successful. See More Impact Our Advocacy Partners Cancer Action Coalition of Virginia Carilion Children's Children's Hospital of Richmond at VCU Children's Hospital of the King's Daughters Inova Schar Cancer Institute UVA Children's Hospital
- Webinar Series | ASK Childhood Cancer Foundation
Empowering families: Join our Webinar Series on childhood cancer and sickle cell disease. Expert insights, personal stories & valuable topics. Register now for upcoming webinars! WEBINAR SERIES SERIES ASK's webinar series provides information and support to families to help them navigate the childhood cancer & blood disorder journey. Hear from guest experts as well as parents, teens, and young adults who shared their lived experiences. Previous Webinars ASK Us About: Class In-Services ASK Us About: Positivity More Videos
- Stay Connected | ASK Childhood Cancer Foundation
Stay connected with ASK with email or text updates! Opportunities to give, volunteer or advocate with ASK to support children with cancer in Virginia. Stay Connected with ASK Sign up to hear about opportunities to give, volunteer or advocate with ASK, and receive monthly stories to meet the children and families your generosity is helping to support. First Name* Last Name* Email* What types of messages would you like to receive from us?* Feel Good Stories Ways to Give Volunteer Opportunities Event Notices Advocacy Please provide just a few more optional details about you that will allow us to keep you more engaged! Phone Number Birthday Month Month Day Year Subscribe
Blog Posts (69)
- Meet ASK Kid Nikolas
Meet ASK Kid Nikolas ! He loves spending his free time outside with his older brothers on the family campground, playing Minecraft, and making friends everywhere he goes. As the family navigated the COVID-19 Pandemic with the rest of the world in 2020, they noticed that Nikolas was not acting like his usual self. "He got COVID, and then he just never really got better. He started getting more and more tired, putting on some weight, losing his appetite, not eating, lots of headaches, nose bleeds, and we would take him to the doctor," ASK Kid Nikolas's dad, James, recalled. While medical professionals were still trying to figure out the COVID-19 virus, they wrote off Nikolas's symptoms as a continuation of COVID-19, suggesting more vitamin C, zinc, and lots of rest to recover. Despite following doctors' orders and COVID protocols, Nikolas wasn't improving, and his decline became increasingly noticeable. ASK dad James recalls the day he had a gut feeling that his son was experiencing something more serious: "Nikolas was going to bike around the family campground as he normally would, but he just couldn't do it. He would go outside, ride his bike for maybe 30 seconds, and then come in and say, 'Oh, Dad, I'm just so tired, I just can't do it.' And then the real turning point was he ate very little." A few days later, Nikolas' symptoms became even more evident. "He was with his mom, and he ate very little, and then he laid down on the floor, and he just threw up and he wouldn't move. So his mom called me and said, 'I need to take him to the emergency room.'" James shared. Nikolas chimed in, saying, "It was one of my favorite meals, too!" further emphasizing the abnormality of his symptoms. Nikolas's mom quickly rushed him to the emergency room only to be told the same answer—COVID-19. Nikolas' parents weren't satisfied with that answer. They knew this was different and decided to request blood work for Nikolas. What they found changed their family's life forever. Nikolas was officially diagnosed with Philadelphia-Positive Acute Lymphoblastic Leukemia (Ph+ ALL) in 2022. "It was one of those; everybody got real quiet…they wanted to transport [Nikolas] to whichever children's oncologist would take him first. Fortunately, Roanoke answered the call first and was immediately transported to Carilion Children's Hospital. ASK Dad James was a constant presence at every hospital visit, trying to make sense of their new reality. "The one thing that I didn't even consider or think about was school," he recalled. Similar to many parents navigating childhood cancer, he was focused on Nikolas' medical appointments, health, and treatments; it simply hadn't crossed his mind. That's where ASK came in. Amy Fender, the ASK Education Support Navigator, walked into the room all smiles and ready to help Nikolas get resources and activities to help him overcome any gaps he may have accumulated while out of school for treatment. Amy is one of six Navigators stationed at each of Virginia's five pediatric cancer treatment centers, bridging the gap between hospital inpatient stays and patients' schools to help them stay on grade level and receive the accommodations they need to be successful. "It was such a relief to have her walk in and say, 'I got this part. You take care of him. You keep him happy. The doctors are going to do the medicine. I'm going to do the school. You take care of Nikolas.' And that's what we did." - James, ASK Kid Nikolas' Dad At Carilion Children's Hematology/Oncology, the family found a supportive network of people who quickly connected with Nikolas. They patiently guided them through the complexities of his diagnosis, explaining that his specific case required a treatment approach more akin to Acute Myeloid Leukemia than the typical ALL protocol. This meant a more aggressive course of action. Though the standard treatment for PH-ALL lasted three years, Nikolas's intense regimen concluded in two. "It was very aggressive, but he was a trooper," James said proudly. This spring will mark Nikolas's family's third year participating in the annual ASK 5K & Fun Walk, one of our signature events that raise funds and awareness for childhood cancer. James expressed, "We are very happy to continue to donate to that cause…I know there are so many people that have to make that choice. 'Do I go to treatment, or do I go to work? Do I buy gas, or do we buy medicine?'" Just like his favorite Marvel superheroes, Nikolas faced his cancer journey with remarkable courage and an unwavering smile, forming many friendships. His resilience continues to inspire not only his family but everyone who meets him. He is regaining strength and returning to his regular life, one step at a time.
- Meet ASK Kid Kyleigh
Meet ASK Kid Kyleigh! At just 9 years old, she's got a big, fun life! Imagine this: she's got a whole crew at home with two brothers, a sister with one more sister on the way. When she's not hanging out with them, you can probably find her dominating the soccer field, zipping around on four-wheelers and dirt bikes, or getting super creative with art projects. With such a vibrant personality and spirit, you would never guess that Kyleigh faced a serious health challenge. Life took an unexpected turn for Kyleigh when her mom, Kelsey, noticed a bump on her left arm during the family's Memorial Day trip to the pool when she was just six. Kyleigh told her mom she thought she had hurt it a few days before on the trampoline, prompting the family to go to urgent care. Urgent care initially suspected a fracture, but a subsequent examination by an orthopedic specialist resulted in the family going to VCU Massey Cancer Center, where they uncovered a more serious issue: a Rhabdomyosarcoma tumor. Kyleigh's mom, Kelsey, knew that Kyleigh had several unexplained fevers and everyday bumps and bruises from jumping on her trampoline but never suspected childhood cancer. "After the biopsy and diagnosis, we thought she would need her arm amputated. However, surgeons decided to see how the tumor responded to radiation and chemo. Sure enough, the tumor began to shrink, but amputation was still recommended long-term," explained Kelsey. After the initial shock of her diagnosis, Kyleigh's family began searching for the best path forward. They knew they had to act quickly and do everything possible to protect her future. "I felt like we needed to do all we could to save her arm, so we got a second opinion at the Cleveland Clinic. There, we received more bad news. Kyleigh now had cancer spots in her lungs. We immediately started new chemo and radiation treatments for her lungs. We were devastated," shared Kelsey with a heavy heart as she remembered the day the family received the news. From the early days of Kyleigh's diagnosis, ASK became an integral part of her and her family's journey and was there to lend a helping hand during difficult times. "I had to quit my job to manage Kyleigh's healthcare, so ASK's financial assistance was a lifesaver," remembers Kelsey. “I was pregnant and felt like I had the weight of the world on my shoulders. Grocery and gas gift cards were just the beginning, and the bill assistance ASK provided relieved some of the financial stress of childhood cancer.” - Kelsey, ASK Kid Kyleigh's Mom In addition to providing financial support, ASK stepped in to help ensure Kyleigh stayed on track in school. ASK's Education Support Navigator, Jon Longenecker, played an integral role in developing her homebound classes and the 504 plan so that Kyleigh would have the support she needed to be successful. Jon is one of six Navigators stationed at each of Virginia's five pediatric cancer treatment centers. These dedicated professionals bridge the gap between hospital inpatient stays and patients' schools, helping them stay on grade level and receive the necessary accommodations to succeed. Today, Kyleigh is thriving and loving life as a third grader. Her medical team keeps a close eye on her to make sure the tumor stays stable, and she's back to doing what she loves! She's even a bit of a local celebrity, having served as the 2023 Anthem Lemonade Ambassador and appearing in Anthem commercials!
- Meet ASK Kid Isiah
Meet ASK Kid Isiah! Like any other 14-year-old boy, he loves playing Fortnite, Roblox, and flying planes online. However, at the age of 11, things were very different. "A social butterfly and a very happy kid," is how his mom, Yesim, describes him. "I knew something was wrong when he began complaining of headaches and generally being very emotional. Even his teachers were noticing a difference in his personality." Yesim's motherly intuition told her it could be cancer. After several visits to pediatricians, where he was diagnosed with a virus, Isiah began vomiting. This led them to the emergency room, where a doctor delivered the most terrifying words Yesim had ever heard: "Your child has cancer." Isiah was referred to VCU for more tests over a four-day period. It was a difficult diagnosis, but no one was giving up. Eventually, Isiah was diagnosed with Large B-cell Lymphoma, a type of leukemia. Isiah’s diagnosis was extremely scary and difficult for his family to process. His mom, Yesim, thought it was "the end" for her family. "I quickly realized that if I was scared, then my child would be scared, so I decided to be brave," remembers Yesim. "At first, I compared my child to other children in treatment, but I learned that every child is different. Then I realized that there is a light at the end of the tunnel, and I should not lose hope." For Yesim and her family, ASK Childhood Cancer Foundation provided that hope. “Katie Barber, the ASK Child Life Specialist, was the first person we met in clinic, and she was a beautiful example of how positivity and kindness can change a very scary day into a day that we could handle.” Since that first introduction to ASK, Isiah and his family have participated in many ASK activities, with the holiday party being their favorite. In addition, ASK’s Education Support Navigator, Jon Longenecker, has been an integral part of Isiah’s continuing education through his treatment. “We had a lot of issues with the homebound program through our school system, and Jon made sure that Isiah got the help he needed. He continues to be involved now that Isiah is transitioning back to school, ensuring that Isiah has all the resources he requires to be a good student. He’s truly one of the kindest humans I’ve met in my lifetime,” continues Yesim. “It amazes me every day how ASK knows what we need and then provides a solution to our needs, no matter what it is. For example, they discovered our vacuum broke and ASK bought us a new one without me asking. As a single mom with all my family in Germany, this type of support is vital to my family’s success.” - Yesim ASK Kid Isiah's Mom Paying the family’s rent and providing food and gas gift cards for their many trips to VCU are just a few of the financial gifts Isiah and his family received from ASK. After 2 ½ years of chemotherapy, including 14 months of very harsh treatments, Isiah graduated to the maintenance phase and is slowly getting stronger each day. “Our life is returning to normal, I think,” laughs Yesim. “Isiah is doing well and happy again. He’s doing better in school and is focusing on his health. We are so grateful for every day! To this day, Isiah “never complains about what has happened to him and we continue to have fun days,” says Yesim. “Cancer can’t stop us from going to the pool and the beach or visiting with friends. Part of the nightmare of cancer is seeing all of those sick kids in Clinic and hearing about relapses. Nobody can tell us the future, but ASK walks this journey with us every day and mitigates our fear. ASK is hope in the midst of childhood cancer!”