“I like being part of the process,” says Shania. “Now that I’m 14, I need to understand what’s happening and what I need to do to help myself. Sickle cell is a roller coaster because I don’t know what’s going to happen when I wake up. Sometimes I have weird pains and I have to miss school. Not many people know why I’m not in school, but my close friends get it.”
Shania is showing everyone that living with sickle cell anemia is possible – her infectious smile inspires us all!
Shania and her mom, Tai, at the 2017 ASK 5K Donut Run .
Sickle cell disease is a genetic condition that affects the body’s red blood cells. It occurs when a child receives two sickle cell genes—one from each parent. In someone living with this disease, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. When sickled red blood cells travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such as infection, acute chest syndrome and stroke. The pain experienced by people living with sickle cell disease can vary in intensity and last for a few hours to a few weeks. Source: U.S. Department of Health and Human Services
Summer has flown by but we finally got the chance to catch-up with Steve McCoy, who took on the role of ASK Board President in July. Steve is no stranger to ASK and shares why he volunteers his time helping our kids and families. Pictured above, Steve smiles with ASK kid Berekley during the Kourageous Kids Party held on September 8, 2019.
I first became involved with ASK in the late 1990s after a friend who served on the board told me about it. I’d been looking for something meaningful to pull me out of the work bubble I was in as a young lawyer at a large firm. I love practicing law but you do occasionally ask yourself “what good did I do today”? I never ask myself that question after an ASK event.
Early in my initial tenure on the board, I came unprepared to a meeting and a fellow board member let me have it. After the meeting she came over, put her hands on both my shoulders, and said “This is important, you know?” Then she gave me a hug. I was struck by how maternal her approach was and then the penny dropped: she was an ASK mom. My inattention affected her family, however indirectly. I haven’t forgotten that. I saw her recently and she gave me another hug, so either I’m doing something right or I’m on my way out.
At times, charity board service can feel removed from the day-to-day of the group you hope to serve. At ASK events, the person next to me is often a parent, friend of a patient, or patient him- or herself, and I can’t help learning a little more about life with cancer and the ways we might be able to make it just a bit better.
The thing I love most about volunteering with ASK is the degree to which volunteers are able to roll their sleeves up and work alongside staff, families and patients. I love the immediacy of service with ASK. It's also a real joy to work with so many thoughtful and dedicated people. The staff and volunteers at ASK are remarkable.
Missed school days and late effects from treatment can make returning to school a challenge for children with cancer. That’s why ASK is rolling out a new resource to make sure that every child with cancer in Virginia has the support that they need in the classroom. Our new educational toolkit will help guide parents, teachers and doctors in creating a plan to support a child when they return to school.
Cancer treatment can create many late effects that will affect a child’s ability to learn, grow and thrive after treatment. Common late effects include cognitive such as slower processing speeds, short term memory loss, and difficulty multi-tasking. Some cognitive late effects may not show up until years after treatment.
As a student’s course load becomes more challenging, impaired executive functioning skills (ability to juggle multiple projects successfully) can become apparent. Physical late effects that impact a student in the classroom include fatigue, hearing and vision loss, nausea and pain. And then, there are many emotional challenges for young patients. The loss of contact with friends and peers and the quest for normalcy all make returning to school a challenge.
"While not every community has an education coordinator to assist with transition back-to-school, this toolkit gives the medical team, school, parent and child with the support needed to identify accommodations and awareness to ensure academic success," shares Alma Morgan, ASK's Education Coordinator. With over thirty years of experience in helping young cancer patients and survivors transition back to school, Alma has a wealth of knowledge and tips in ensuring an easier return to school.
This toolkit was made possible with a grant from the Virginia Department of Health and the Centers for Disease Control and Prevention. It will be distributed through all five pediatric cancer treatment centers in Virginia as patients and survivors return to school.
Join us in welcoming Rich Catlett as ASK's new chaplain! Rich joins us after serving six years as the chaplain for Noah's Children where he provided spiritual care for children with chronic, life-threatening illness and their families.
Rich has worked with children, teens and their families throughout his career which is what makes him the perfect fit to our clinic support team at the Children's Hospital of Richmond at VCU. ASK's chaplain was the first position created in 1978 and today still plays an important role in providing the psychosocial care that helps to Make Life Better for Children with Cancer.
Rich is a proud graduate of Virginia Tech and Campbell University. He will be married to his amazing wife Anne for 15 years in October and has two daughters - Ellyson, age 10, and Embrey, age 5.
Rich, we're so glad you're here!
In March of 2018, then two-year-old Lillie Agyeman took a family trip to Charlotte, NC to celebrate Easter with her grandparents. Lillie didn’t seem like herself, not wanting to play or walk, and began running a low-grade fever. When they returned home, she had a simple blood test and within minutes, her mom, Stacie, received the phone call that she needed to go the nearest emergency room as soon as possible. Lillie was diagnosed with pre B acute lymphoblastic leukemia and referred to the pediatric oncology/hematology department at the Children’s Hospital of Richmond.
“The diagnosis came out of nowhere,” remembers Stacie. “I thought she had a stomach flu, so leukemia was the last thing on my mind.” Within days, Lillie began her almost three-year treatment, starting with a steroid regimen, then lumbar punctures, and finally chemotherapy. Now, almost four years old, she is more than half-way through treatment and is back to her old self.
“Is this ever going to be over?” sighed Heather Whitehead. Her son Matthew was in the middle of his chemotherapy and radiation treatments for a childhood cancer called Pineal Germina, a rare brain tumor, and she was tired. Thanks to the pediatric oncology team at the Children’s Hospital of Richmond and lots of prayers, Matthew’s treatments are over now, and he is back to being a third grader at Battlefield Elementary School in Fredericksburg, Virginia.
When Matthew grew four inches, four shoe sizes and four clothing sizes in three months, Heather knew something was wrong. An endocrinologist sent him for an MRI to rule-out the “5% chance of a brain tumor,” and then the diagnosis came that a tumor was growing on the pineal gland, in the middle of his brain. Matthew had surgery to reduce the pressure on his brain, but because of where the tumor is situated, doctors recommended radiating to shrink the tumor.
ASK kid Valentin was first diagnosed with Pre-B ALL Leukemia at the age of 2.5 and then relapsed at the age of 6 in 2017, shortly before his seventh birthday. He has had chemo treatment ever since he can remember and in two countries, Germany and the US, as the family was traveling at the time of first diagnosis. He's an incredibly courageous, gracious, patient and kind little boy who inspires us to keep going. And that is why we asked him to be our co-chair of the 14th Annual ASK 5K & Fun Walk. His mom, Margaret, shared their story below at the walk on May 4, 2019.
by Melanie Goodpasture
Meet Patrick. He loves math and robotics. Patrick just finished building his first computer, part by part, while taking chemotherapy treatments for Leukemia.
When Patrick was 12 years old, he began having chronic strep throat infections and generally didn’t feel well. When he was too weak to carry his backpack home from the bus stop, his mom knew something else was wrong.
Now in 8th grade at the Collegiate School in Richmond, Virginia, Patrick is back in the groove of school and extra curricular activities while still taking chemo treatments. He continues to excel in math and is one of only a few middle school students on the high school robotics team.
Mary is grateful that her family has ASK as a resource. “I don’t know what we would do without all of the ASK events, camps and friends that we’ve made throughout this journey. All of these things are instrumental in Patrick’s recovery and I could never say ‘thank you’ enough!”
On Friday, April 5th ASK held it's "Educating Pediatric Cancer Patients & Survivors" Conference to Roanoke. Experts from the Children's Hospital of Richmond at VCU and Carilion Clinic gave compelling and information-packed presentations to school personnel from around the region about the unique needs of pediatric cancer patients and survivors. The teachers, nurses and school counselors who attended learned practical ways to support those kids when they return to the classroom. This conference was made possible with a grant from the Virginia Department of Health.
The Lynch Family: Dennis, Marshall, Eleanor and Coley.
ASK Childhood Cancer Foundation, Central Virginia’s leading and most comprehensive provider of emotional, financial and educational support to children with cancer and their families, has received a generous gift from Marshall and Dennis Lynch. These funds will be used to develop and expand programs providing direct assistance and guided care for families struggling with a pediatric cancer diagnosis.
Families caring for a child with cancer face extraordinary stress, an experience all too familiar for the Lynch family. Dennis and Marshall’s daughter, Eleanor, is currently undergoing treatment for Acute Lymphoblastic Leukemia at the Children’s Hospital of Richmond at VCU.
At the time of diagnosis, 16 year old Eleanor was a sophomore at St. Catherine’s School. She played in a soccer game one afternoon and then woke up that night with a mild fever and sore knee. Marshall describes the days that followed: “We thought she was just run down, and that the fever and the knee pain were likely unrelated. Then we thought maybe she had Lyme’s disease or something like it. We took her to her primary care doctor, but didn’t get the blood test results right away. By that evening, Eleanor’s pain had escalated. We knew something wasn’t right and rushed her to the emergency room.” Doctors discovered the pain was coming from the bone marrow in Eleanor’s knee that had become crowded with cancer cells. That’s when the family received the news that Eleanor had leukemia. Their world turned upside down as Eleanor began chemotherapy two days later.
The first year of treatment was extremely difficult. Between countless spinal taps, IV chemo treatments, side effects, and constant neutropenia, Eleanor spent many nights in the hospital. As a stay-at-home mom living relatively close to VCU, Marshall was able to focus on her daughter’s care while still taking care of their son, Coley. Even so, it was not easy, and she often wondered – "how do families with two working parents, or a single parent, or who live further away handle this?"
Caregivers of a child with cancer often find themselves unable to leave their child's room or bedside for things as basic as eating a meal, doing laundry, having a private conversation with clinicians, or just taking a mental break. That’s where the Lynches saw a need for expanding dedicated respite care, which was a program goal that recently had been identified by ASK. “Hospital stays are exhausting. Leaving your child alone is often not a viable option. Having respite support available is incredibly helpful,” said Marshall.
In September 2018, ASK utilized the Lynch family’s gift to hire a Family Support Coordinator – a new staff position aimed at providing more support to families with a child in treatment. The position is dedicated to helping families manage stress, improve quality of life, increase quality time with siblings and improve their overall well-being.
In addition to providing in-patient respite services, the family support coordinator gets to know each family and is able to personalize her efforts. From assisting parents and caregivers with organizing all of the paperwork, appointments and medications, to sending personalized care packages with gas and grocery gift cards, or planning events just for siblings; she ensures the entire family unit is supported.
Marshall notes, “No one is ready for this diagnosis. No one has an education in caring for your child with cancer. You don’t know what you don’t know. If I needed this type of support, I know that other parents do, too.”