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- Meet ASK Kid Caroline
“I want people to know that everything that happens to you in your life will make you a better person, even cancer,” says Caroline Dunn. “The longer you mope, the longer you’ll be stuck in the mope. Having a positive mindset is huge to not only recovering but actually thriving.” Sage words from a young cancer survivor. In December 2021, at age 14, Caroline was diagnosed with B-Cell Acute Lymphoblastic Leukemia. Now, one year into a potentially three-year chemotherapy regimen, Caroline is looking forward to doing all the things that a typical 15-year-old is ready to do, like picking a college and driving a car by herself. “I just want to get through this and have a future,” continues Caroline, “I’m enjoying the time to sit back and think about what I want to do, and then I’m going to do it!” Caroline knew something was wrong before she was diagnosed with Leukemia. Random bruising and feeling “gross” left her with an uneasy feeling that her health was declining. One day, she called her mom from school and asked for a blood test. When her mom took her to the pediatrician, Caroline was told she was depressed and should talk with someone or start depression medication. Luckily, the doctor did a finger prick blood test which confirmed Caroline’s suspicions: something was terribly wrong. “My initial cancer diagnosis was a relief. Finally, I knew what was wrong with me. But I immediately wondered how the chemotherapy would affect me short term, and what my life would look like long term. I was a competitive gymnast, and I knew that I would need to quit so that I could heal." Luckily, ASK Childhood Cancer Foundation was there to guide Caroline and her family through her diagnosis, treatment, and remission. “I’m so grateful for donors to ASK. Sometimes I feel like people assume that someone else will help or donate. I want everyone to know that we all need to actively do something to help!” And Caroline is willing to pitch in herself. She and her mom produced a video to encourage people to donate blood. Caroline was denied blood twice when VCU Health System was critically low on blood. "I don’t know what we would have done without the gift cards for food and gas, presents at Christmas, emotional support through counseling for me and my siblings, and all the programs and services that ASK provides to every family. I will be forever thankful for everything they’ve done for us." - ASK Kid Caroline “Katie, the Child Life Specialist in the ASK Clinic, is one of my favorite people in the world,” gushes Caroline. “All of the people associated with ASK have been so kind and supportive of not only me, but my whole family. I don’t know what we would have done without the gift cards for food and gas, presents at Christmas, emotional support through counseling for me and my siblings, and all the programs and services that ASK provides to every family. I will be forever thankful for everything they’ve done for us." “Nothing that happens to you defines who you are as a person or how you will be identified for the rest of your life," Caroline continues. "You can make a difference in this world, and that will determine how people know you and remember you.”
- ASK Honored with Richmond History Makers Award
On March 10th, 2020, ASK Childhood Cancer Foundation was honored with the Richmond History Makers Award under the category of "Creating Quality Educational Opportunities." ASK was one of six local nonprofits and individuals recognized for their work in our community. The awards are given out each year by The Valentine Museum. ASK Executive Director Amy Godkin and Educational Coordinator Alma Morgan received the award on behalf of ASK's education team. Alma has been an educational consultant and passionate advocate for pediatric cancer patients and survivors in our community for 30 years. ASK provides educational support services from preschool through post-secondary for patients and survivors in Central Virginia. ASK also provides educational support across the state through its educator conferences, educational tool-kits and advocacy work.
- Self-Care is Important for ASK Parents, Too
As ASK’s chaplain, Rich Catlett sees every day the many stresses that having a child with cancer can put on a family. But as Covid isolation and concerns continue, and opportunities for ASK families to connect with the outside world are diminished by treatments and extended hospital stays, Rich knows that new mental health challenges are developing and deep fatigue is growing. For three years, Rich has served every family that is treated in the ASK Clinic at the Children’s Hospital of Richmond. Serving as the chaplain in a previous job, he was accustomed to helping children and families with chronic illnesses and end-of-life care. However, when Covid hit, Rich noticed that the isolation for ASK families became even more significant. “We no longer had a connection point for parents in Clinic or through in-person ASK events,” explains Rich, “and we began to see a new level of anxiety among patients, families and staff. These families need a lifeline in others who truly understand their struggles. This population needs connection to get through the day." Rich knew that these connections needed to be more deliberate and began coordinating “happy hours” for Clinic staff where they could get coffee and a treat, and just talk at a distance. He began encouraging parents to take time for themselves and do something as simple as taking the long way home to help clear their heads. “Self-care is so important if we truly want to be helpful to others,” says Rich. “It’s hard for these parents to care for themselves when their child is so sick.” To promote his own self-care, Rich started getting therapeutic massages with an oncology certified massage therapist. He found himself wishing that ASK parents could have the same opportunity to unwind, but knew that time, money, and scheduling would make this impossible for some. So he thought: “What if we just make it happen? What if this could be one more service that ASK can offer?” The response from families was overwhelming. Rich converted the Children's Corner in the ASK office into a peaceful atmosphere where parents were able to feel compassion and care for themselves. “There’s something so therapeutic about human touch that allows us to clear our minds and be reminded of our humanity. We want to constantly provide better care for our patients and our families, and it’s my hope that a monthly massage day will become one more regular service that ASK provides,” says Rich. While mental health issues continue to evolve in this ever-changing environment, Rich credits his faith and his colleagues with the ability to meet the needs of patients and families. His typical day is anything but typical, and he purposely doesn’t schedule his day so he can adapt to whatever situation may present itself. “Some days, I care for all staff and some days, my care is directed to only patients and parents. This is doable because my faith sustains me, and because we work as a team in the ASK Clinic. We all work on spiritual, medical and emotional care. We all support one another and that helps us deal and cope with our environment.”
- Meet ASK Kid Eshan
With Harvard in his sights and many more documentaries to produce through his non-profit film company, Eshan Vishwakarma is ready for the next chapter in his life. The fact that he is a 15-year cancer survivor of Stage 3 Neuroblastoma helped shape his future, but didn’t derail his goals and aspirations. “I don’t remember a lot of my diagnosis,” explains Eshan, “but I know my parents and I fought hard for me to be here. We shifted our entire lives for my chemotherapy, radiation and immunotherapy, and I’m so grateful to just be here and for all of the support I’ve received from ASK.” Eshan says his most challenging moments came after survivorship when he had two major surgeries for hip dysplasia in 2020. “I missed a great deal of school before the pandemic and virtual learning became a thing,” says Eshan. “I experienced ASK’s online tutoring program and the power of Alma Morgan, ASK’s educational coordinator. She was a constant advocate for me within my school system, and continued her support even after I recovered.” And Eshan is paying it forward. “It was a very sweet moment for me when I could shift from student to tutor, helping other cancer kids with their homework at ASK’s after school program,” Eshan shares. His ASK 5K team, Outspoken Narrative, named for his non-profit, raised more than $1,000 this year, and Eshan was named the 2022 Tad DuPriest Volunteer of the Year. Eshan’s future plans include volunteering in Clinic and ASK’s after school program when he’s home on college breaks. “I love going back to Clinic because I know and love everyone so much. It’s like going home.” "I almost lost everything and, with the support of my family and my ASK family, came back stronger." “I’ve spent a lot of time reflecting on my cancer diagnosis and how it has shaped me," says Eshan. "I almost lost everything and, with the support of my family and my ASK family, came back stronger. My cancer survivorship made me want to tell the incredible stories of others who have overcome obstacles, and it led me to form Outspoken Narrative.” In collaboration with other high school and college film makers across the world, the company produced 12 documentaries in its first season and attracted the attention of Adobe. “The new partnership is just surreal,” laughs Eshan. “We have been awarded a grant from Adobe to test some new film making software they are creating. I’m completely astonished.” Congratulations on all of your accomplishments, Eshan. You continue to astonish all of us!
- The Levi Family Legacy
Celebrating 10 Years of the Fredericksburg Classic 10 years ago, two little girls had a dream to raise $1 million for ASK Childhood Cancer Foundation. 10 years of hard work and dedication later, they are a 1/3 of their way towards that goal! “Mackenzie has never known life without cancer,” explains Victoria Levi, co-founder of the Fredericksburg ASK Golf Tournament. When Mackenzie was 21 months old, she was diagnosed with Medulloblastoma, a brain tumor at the base of her brain. She underwent 2 surgeries and 7 months of chemo down at VCU before being declared ‘cancer free’. But that didn’t stop the visits to the clinic and the follow up testing. Every few months, she would have to have blood work and MRIs to look for tumor recurrence, so it seemed like she spent a lot of time down at the hospital. But instead of being afraid of it, Mackenzie made it a playground and everyone there was her friend. So much so that the Levi family started attending ASK social events to connect with clinic staff and other cancer families they had befriended at the hospital. “ASK is the invisible, behind-the-scenes force of nature that families don’t know they need at the time of treatment,” says Victoria. “We mistakenly believed that all of the toys and games and gas and meal cards, and even staff like Katie Barber, were provided by the hospital, but all of that support was provided by ASK. They were a Godsend to us, and we knew we needed to do what we could to give back.” The Levi started by attending the ASK Walk and set up a team and a webpage to raise money for ASK. As the years passed, Mackenzie began to understand what was going on and wanted to do her part to raise money for the “boys and girls at the big hospital.” In first grade, Mackenzie and her best friend Megan decided to sell painted rocks and lemonade to earn ‘1 million dollars’ for ASK and her parents knew they needed to do something else to support them in their effort. With Megan’s dad, Ralph Rapillo, and his friend Mac Church, Jon and Victoria organized the 1st Golf Tournament to raise funds that would stay in the community. Ten years later, it’s become a full family affair with Mackenzie’s little sister Grace joining in and volunteering at the tournament along with Victoria and Jon’s friends. “It definitely takes a village to pull this off year after year”, Victoria said. “We have great friends that volunteer every year to run the registration and the logistics of the day and put together goodie bags. We wouldn’t be able to do any of this without them." Victoria credits the success and growth of the tournament to those community partnerships. “Mac Church knows everyone in Fredericksburg, and they all come out to help and support the tournament by playing, sponsoring or donating. Without their support we wouldn’t be able continue to meet and even exceed our goals. Every year, our players and sponsors return and the tournament gets bigger and better. And here we are on year 10! We never dreamed it would be this successful or go on this long." “We were helped so much by the community and our friends and by ASK during and after Mackenzie’s treatment," reflects Victoria. Covid threatened to cancel the 2020 tournament, but faithful followers remained loyal and were open to any changes that needed to happen to make it a safe event. “Things like the dinner and raffles didn’t matter to them”, Victoria says. “They just wanted to play and raise money for the kids, so we adapted to the situation, and made some changes that allowed us to social distance”. Instead of raffle gift baskets, the tournament gave out gift cards, and provided pre-packaged snacks instead of dinner. “Everyone embraced the changes because we knew we were continuing the tradition of raising money for children with cancer in our community.” Mackenzie Levi is a senior this year, and continues to motivate and inspire participants in the tournament. Victoria says it’s a full-circle moment. “We were helped so much by the community and our friends and by ASK during and after Mackenzie’s treatment. Watching your child undergo cancer treatment is heartbreaking and it changes you. So every time Mackenzie’s story can inspire someone to take action, to get involved, or to give to ASK, well then that means that maybe her hard days have helped someone else have a better day.”
- Having Fun and Making Friends (& Pizza!) in Fredericksburg
When Jon Longenecker started with ASK to create services and programs for our families in the Fredericksburg area, he saw an opportunity to create something amazing. As a retired special education teacher, he was accustomed to creating new and different approaches to learning and social challenges with adolescents and young adults, and he knew that he could help build the same type of programming and services in Fredericksburg that are offered to young pediatric oncology patients in Richmond, ASK's home base. “The more I learn about ASK and its mission of making life better for children with cancer, the more I fall in love with this organization and what it accomplishes on a daily basis,” says Jon. “I wasn’t aware of the learning and social difficulties that children with cancer can experience until I discovered ASK and all of the ways that ASK reaches each child, sibling and parent. I’m more convinced than ever that we can help mitigate some of the challenges these children face during treatment and in survivorship.” Perhaps one of Jon’s most important initiatives is the after-school tutoring program. Here, kids are helped not just with their schoolwork, but something else just as important: socialization and building long-term friendships. “These kids experience so much isolation because of treatments,” continues Jon, “and their mental health needs are as important as their physical needs. We’re able to build lasting relationships by meeting once a week and helping each other with homework, but also through games, field trips and just having the opportunity to be teenagers. This is vital to their continued development, in spite of a thing called cancer.” “I go to the kids’ school functions and sports games, and they have built such strong friendships as a result of our programs." Jon hit the ground running by hosting a make-your-own-pizza party, a tour of the local airport and museum, a movie night, a fishing derby and so much more! Plans are in the works for a Fredericksburg Nationals night and a week of summer camp. “I go to the kids’ school functions and sports games, and they have built such strong friendships as a result of our programs. They are starting to attend one another’s high school plays and camps outside of ASK events. It's really incredible to see their support of one another develop and grow organically as a result of their time spent with each other here at ASK." “I am a man of faith and I know I’m where I’m needed most. I’m so excited to be part of such an impressive team of incredible people. I know we are making a difference in the lives of those affected by childhood cancer and I want to see our programming and participation grow exponentially. Thanks to generous donors, we’re on our way!”
- Kids with Cancer Included in VA Budget for the First Time!
The moment we've been waiting for has finally arrived! Earlier today, the state budget was signed and approved by Governor Youngkin. This means that children with cancer will receive dedicated state funding for the FIRST TIME in Virginia’s history. In a nutshell, this new funding will: Provide a Pediatric Cancer Support Navigator for each of the five pediatric cancer treatment centers across Virginia. Create a bridge between a patient's medical team and their school to ensure they don't fall behind. Help EVERY young cancer patient transition back to school during and after treatment. This amazing win wasn't achieved by ourselves or overnight. We've worked closely with the Virginia Childhood Cancer Network members as well as our advocates throughout the state over the past four years to make this a reality. This also would not have been possible without the incredible pro bono guidance and support of Robb Bohannon and Hunton Andrews Kurth. While Central VA is our home base, we believe every family in Virginia deserves this support. #MakingLifeBetter for kids with cancer is the very heart of our mission, and this is the next step in fulfilling it. Thank you to everyone who lent a hand to make this possible!
- When You're Ready: Written by Rich Catlett, ASK Chaplain
Photo: ASK families hugging after the Moment of Remembrance at the ASK 5K & Fun Walk on May 4, 2019. On July 31st of 2019, I joined the team at ASK and it has been a wonderful six months of learning and orienting to VCU. Before I joining ASK, I worked as a chaplain for a pediatric palliative care and hospice program in the Richmond area. In that role I was able to work with some amazing families where a beloved child died. Through my five years of service to this organization, I was able to gain a deep perspective around grief and loss. Today I would like to address an aspect of bereavement that I feel is very important. I will refer to it as 'When you are ready.' Whether sudden and unexpected or due to a long chronic illness, the death of a child is the most stressful and traumatic event that any human can experience. It is unlike almost any other type of loss because it goes against the natural order that life teaches us. A parent is supposed to bury and grieve the loss of a grandparent, parent or aunt because they are older and have had a longer life. But burying a child is unnatural. An unnatural event makes us question everything in our lives because it rocks us to the core of who we are and shakes the foundations of our beliefs. Because of this, getting into a natural life order again after the death of a child is incredibly difficult. Life for the grieving family is now more like being in a haze and less like any reality that existed before. The time period after the death of a child is an unnatural state of being, and therefore it is important to remember the phrase, 'When you are ready'. Here are some examples: When you are ready... Share with someone you do not know well the story of your child and all of the beautiful and unique qualities that made them who they were. Share your experiences with someone who is going through the loss of a child. Talk to a counselor about the death of your child and how it is affecting you and your family. Ask a trusted friend or family member to just sit and listen to you for awhile without giving you feedback. And in turn, sit and listen to someone else share the stories of their heart without you giving them feedback. There is power and healing in being heard as you share your story. Go on a trip somewhere your child loved to go or somewhere they always wanted to go. Go on the trip for them and enjoy the things they would have enjoyed. Celebrate their life. Reconcile a relationship with someone where there has been discord. You know better than anyone that life is too short for holding a grudge. Doing these things will life you out of the pit of darkness and allow you to step forward into a brighter direction. Part of my role as the chaplain of ASK is to work with bereaved families. You may be hearing from me in the near future as I attempt to offer support to you and your loved ones. Please know, I do not take it personally if you do not respond right away. I will still be available to you 'When you are ready'. If you are ready now, please feel free to email me to set up a time to talk. Until then, be patient with yourself as it takes time to heal from such a deep wound. Email Rich: Add link here
- Volunteer Spotlight: Rich Chandler, ASK Dad
ASK dads Rich Chandler (left) and Sean Adams (right) reviewing the 5K course route with ASK volunteer Henry Finn. It's 4am and Rich Chandler is busy setting up orange street cones for the next ASK Childhood Cancer Foundation race. He's led the logistics for the ASK 5K & Fun Walk and ASK Donut Run for the past fifteen years and he doesn't plan to stop any time soon. "It's important to me as a business owner and human being to give back to our community and share our many blessings," says Rich. "And we've been incredibly blessed." In 2000, Rich's daughter, Kaitlyn, was diagnosed with a rare form of leukemia, Acute Myeloid Leukemia, typically an adult leukemia. At age three, Kaitlyn's only chance of survival was a bone marrow transplant. Rich considers it a miracle that a donor was found in Germany, a military officer who flew back to the United States to provide Kaitlyn the bone marrow she needed to survive. Now a senior at the Virginia Commonwealth University School of Engineering, Kaitlyn is health and looking forward to life after graduation in May 2020 and Rich's commitment to ASK is even stronger. "We became involved with ASK because of Kaitlyn's diagnosis. ASK was there for us every moment of Kaitlyn's diagnosis and treatment and I want everyone to know what an incredible team ASK becomes with every family diagnosed with childhood cancer." Rich says he's a lifelong ASK volunteer, "I want to help spread the contagious positive energy that comes from ASK administrators, clinicians and volunteers!"
- Henry & Allison: An ASK Love Story
Allison was diagnosed with Non-Hodgkin's Lymphoma in 2010, when she was 14 years old. In 2011, she relapsed and had a stem cell transplant to save her life. She knew she loved life and was willing to fight hard for it, but she had no idea that she would eventually find the love of her life through her cancer diagnosis and volunteerism with ASK. As a survivor, Allison became a dedicated volunteer for ASK, wanting to give back to the organization that had done so much for her. She looked forward to being a counselor each summer at ASK Summer Camp, where she met another volunteer, Henry. He was the babysitter of an ASK kid and was happy to help with camp when asked by Amy Godkin, ASK's executive director. "I felt a connection with the kids that attended camp, year after year," says Henry. "This is a rare and wonderful organization where everyone is willing to get into the trenches and do whatever it takes to make life better for children with cancer, and I love that!" Allison and Henry saw each other at camp every summer and then reconnected Allison's senior year in college. They started dating and three years later, in October 20019, they married. "Their wedding was absolutely beautiful and I was so honored to see their story come full circle," exclaimed Alma Morgan, ASK education coordinator. "It's a beautiful love story. I believe that we go nowhere by accident - Henry and Allison came to camp for a reason!" Henry and Allison are very involved in the ASK 5K & Fun Walk and the ASK 5K Donut Run. They can be seen setting-up course cones before each race and staying till the end to breakdown the course. "It's so important to me to give back," says Allison. "I love that ASK is a full-service organization with services and programs that help from diagnosis to remission. The staff and volunteers do so much good work!" Congratulations Allison and Henry!