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.”
ASK is pleased to welcome Michell Jarnagin-Johnson as our new Launch Project Coordinator. Michelle has worked as a hospital teacher and educational consultant with the Richmond Hospital Education Program at the Children's Hospital of Richmond at VCU. She served children in the outpatient clinics of oncology, sickle cell, hemophilia, child neurology and, for the past twelve years, the Child Development Clinic.
Having worked as a special education teacher, diagnostician and special education coordinator in the Chesterfield County Public School system, Michelle brings a vast knowledge of graduation requirements, special education regulations and 504 compliance issues as well.
Michelle will be supporting our teen and young adults as they strive to "launch" into the next chapter of their lives! Welcome Michelle!
We know that a child’s cancer diagnosis affects the entire family unit. Everything else is put on hold while a child goes through treatment, and established family routines often come to a halt. That’s why ASK added a new Family Support Coordinator this year to add an additional layer of personalized support for our families.
Mary Jo Bell recently joined the ASK staff in this new position. She considers herself a helping hand to families during a time of stress and uncertainty. Mary Jo said “the essence of my job is focused on heart work with individual families. Heart work involves being an active listener and identifying the unmet needs or stressors impacting each family. I customize my work with each family to help support the entire family unit. My main goal each day is to provide practical support to families, and to remind them that they are not alone.”
Mary Jo has worked with children in a variety of settings as certified teacher, a volunteer teacher in Ghana, West Africa, and a long-term volunteer with two major hospital systems in Virginia. She also brings a special understanding about the needs of caregivers because she was long-term caregiver for many years.
Mary Jo is reaching out to our newly-diagnosed families to offer support through phone calls, cards, personalized care packages, and gift cards. We anticipate that she will be offering meal and house cleaning support to newly-diagnosed families, too, in the coming months.
While children are in-patient at the hospital, Mary Jo can provide in-hospital respite. Respite care offers caregivers an opportunity to leave the hospital for few hours to allow them to rest and focus on personal care. Mary Jo loves spending time with the children at the hospital, and she has enjoyed making her respite visits a special time for each hospitalized child.
In addition to services for ASK kids and their caregivers, Mary Jo is adding to our sibling support by hosting sibling-only events, including the Sibling Ceramics Party on the 24th (see below for details!). Siblings experience their own unique cancer journey, and we want to remind them that they have their own community, too.
We look forward to updating you on our family support services as they grow.
by Amy Godkin, Executive Director, ASK
On Tuesday, ASK joined sixty advocates from around the state for Childhood Cancer Awareness Day at the Virginia General Assembly. It was the culmination of months of work that ASK did as part of the Virginia Childhood Cancer Work Group with a goal of raising the level of care for all children with cancer in the Commonwealth.
Why did we take on this lead role in organizing this event and why do we think this is important?
It’s important that we keep the unique needs of Virginia’s young patients and survivors on the radar of our legislators and that they be included in cancer funding in Virginia.
Right now Virginia’s state budget includes $21 million for cancer funding and none of it is designated for children. We think Virginia can do better than 0%. Children are not just small adults. The same therapies won’t work and can’t simply be scaled down for their size.
Additionally, childhood cancer survivors need follow-up care. Two-thirds of them will require chronic life-long medical care as a result of the disease or its treatment. That’s why we’re working toward establishing a pediatric cancer fund here in Virginia.
What would dedicated funding do?
Right now Virginia’s hospitals and supporting nonprofits like ASK carry 100% of the burden of caring for our young patients and survivors. A dedicated fund would build upon this great care that is already being provided and help each community meet their greatest area of need.
ASK has been taking care of Central Virginia’s children with cancer for over forty years. Now we want to help raise the level of care for all pediatric cancer patients and survivors in Virginia. You can learn more and stay engaged with our advocacy efforts by visiting the Virginia Childhood Cancer Work Group webpage.
by Melanie Goodpasture
Every Tuesday and Thursday, four-year-old Micah Scales can be found at First STEP (Socialization Through Enriched Play) Preschool, a unique preschool held in partnership with First Baptist Preschool. The program is dedicated to serving pediatric oncology patients and their siblings. Like other children in his class, Micah is learning the alphabet and singing nursery rhyme songs. And like other children in his class, Micah is a childhood cancer survivor.
“We are young parents and had no support system while in North Carolina,” continues Sherrelle. “Our families are in Richmond, so when my husband, Micah Sr., left the military, we moved here to be near them and the pediatric oncology program at CHoR. Then we met the folks of the ASK Childhood Cancer Foundation and our lives changed forever.”
ASK support began as soon as Micah entered the ASK Hematology/Oncology clinic. Sherrelle and Micah Sr. immediately started attending ASK events. They family even moved closer to the First S.T.E.P. Preschool at First Baptist Church so Micah would not have to miss a class.
First S.T.E.P. Preschool is a unique preschool program for pediatric hematology/oncology patients, and their siblings. Staffed with a teacher and medical professionals familiar with pediatric oncology, First STEP is one of only two similar programs in the country. First STEP is fully funded by generous donations to the ASK Childhood Cancer Foundation.