“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.
“I think about Matthew’s diagnosis every day,” says Heather, but now she’s able to see the blessings in every day, as well. “Matthew was so afraid he was going to die, but ASK was there for us every step of the way. Whether it was donuts for breakfast after a long drive, or a blanket to keep us warm, the people of ASK have treated us like family and made clinic bearable.”
Matthew was able to continue his favorite activity – playing video games – in clinic and has made lifelong friends. “We are so grateful for this sense of community and love that ASK has given us.
“This wasn’t supposed to happen to us,” continued Heather. “We’re so lucky the tumor was caught early, and we’re so blessed to have the services and programming of the ASK Childhood Cancer Foundation for our whole family. How do we ever say thank you?”
Matthew is looking forward to spending the summer playing basketball with his friends and the upcoming ASK Day with the Squirrels baseball team!
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.
Valentin is currently getting treatment, which includes chemotherapy and all the effects that still brings. Valentin returned to school after heavy treatment in October 2018. He has been making the honor roll the entire school year since then - actually, he did during treatment as well, when he had home bound school. He is great at math and making good progress in reading and language arts. He loves to play soccer with his friends, is an excellent swimmer and loves monster trucks and RC cars.
ASK has been such a help to us over the course of both illnesses. The first time, we were especially grateful for the pre-school program that allowed Valentin to hang out with little friends in similar circumstances under the caring, watchful eyes of Miss Jane and Miss Ellen. This is a unique program – one of only two in the country – that adds significantly to the quality of life and development of young children affected by cancer. Valentin had attended pre-school, and this gave him a sense of normalcy and time to be a kid with peers!
Valentin is a regular participant in the ASK afterschool program, and both boys go to the summer camp in the summer. We know they are in good hands. Ms. Alma manages to keep track of how the kids are doing, who needs specific help, and offers suggestions on navigating school.
Valentin receives homework help from Libby, an after school enrichment volunteer.
We are also incredibly grateful for all the support to siblings that ASK provides – outings, summer camp, evenings with friends, the list goes on. This has helped Florian, older brother to Valentin, to feel validated and cared for, and us to remain connected to the cancer community.
One of the favorite outings was Build-A-Bear this year. The boys chose the dragons from the movie. The dragons have travelled with us on trips long and short. The boys put them to bed regularly. They negotiate who gets to have them for the night.
I think it is remarkable that this shared experience of acquiring the dragons together and seeing their making led to polite dialogue and civil sharing between two brothers known for bickering and rivalry!
Valentin and Florian with their dragons.
To summarize, ASK has been with us every step of the way, through difficult and joyful days, always ready to lend a hand, spread some cheer.
The work they do at the clinic is invaluable – to have a chaplain, psychologists and dedicated child life specialists on hand to help families cope, to have friendly staff ready to listen/chat/share/while away boredom (thanks Ms. Katie and Ms. Denice), has made a huge difference in our cancer journey.
I can’t imagine the clinic without ASK. It would not be the same. I think it’s the exercise of trying to imagine ASK not being there that makes me realize how omnipresent they actually are, how the medical mission is infused with their tireless work and effort, and what a difference they make in patients’ lives. Thank you, ASK, for your wonderful programs and support that have kept our family strong and fighting!
Valentin with Morgan Dean, 8News Anchor, after co-chairing together the 14th Annual ASK 5K & Fun Walk at The Diamond.
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 Cancer Action Coalition of Virginia.
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!
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.
Patrick loved to play soccer and run and be active outside, so when he started losing energy and interest in being outside with his brothers, my mother’s intuition told me I needed a second opinion,” said Mary Jacobs, Patrick’s mom. “A simple blood test told us everything we needed to know and within hours we were in the emergency room of VCU Health System.”
ASK was with Patrick the first time he entered clinic helping to make it less stressful. Mary shares, "Katie, ASK's child life specialist, is always available to help occupy his time while in clinic and Tom David, chaplain, is a constant source of comfort and support."
Katie, Patrick and Mary at the ASK 5K & Fun Walk, April 2017.
Patrick particularly loves the computer games he can play while getting treatment in clinic and enjoys making friends.
“The ASK staff have become our family,” says Mary. "Alma Morgan, Educational Specialist, coordinated his homebound schooling during the first year of his treatment, and continues to monitor his progress now that he’s back in school. We are so grateful to all of the people who have spent so much time helping us navigate this foreign territory.”
Patrick (seated, far left) hung out with fellow ASK kids and UR Spiders baseball players for Video Game Night at Penny Tree.
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!”
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.”
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.
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?
It could provide targeted research dollars that would help improve outcomes and reduce late effects from treatment.
It could provide educational support for young patients heading back to the classroom that would help them keep up with their peers despite missed school days.
And it could provide psychosocial support to help reduce the anxiety and depression that so often comes with this diagnosis.
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.
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.
Micah was diagnosed with a Wilms Tumor in his right kidney when he was eight months old. “We noticed a nodule on his left side when he was born, but two different pediatricians told us there was no need for worry,” explains Micah’s mom, Sherrelle. The nodule continued to grow and Sherrelle’s worst fears were confirmed. Micah was diagnosed and initially treated at the University of North Carolina Medical Center, where his right kidney was removed and he received both radiation and chemotherapy. He was transferred to the Children’s Hospital of Richmond when his family relocated to the Richmond area.
ASK kid Micah enjoys playtime at First STEP Preschool (November 2018)
“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.
“ASK is family to us, and has supported us in ways we didn’t even know possible,” says Sherrelle.
Micah is in remission and continues to receive periodic CT scans to monitor his progress. Although he is terrified of needles, the ASK Clinic provides a place for Micah to relax and participate in therapeutic play with a child life specialist while waiting to be seen by the medical team. When not in clinic, Micah enjoys playing outside, reading, watching cartoons, swimming and visiting his grandparents.
Micah and his mom, Sherrelle, at the Kourageous Kids party (September 2018)
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.
“How can I help you, Mommy?” asks four year old Callahan. Like all pre-schoolers, Callahan loves helping his mom, wrestling with his two big brothers, and playing outside with his trucks. No one would ever know that Callahan is a two-year survivor of Ependymoma, a rare brain tumor typically found at the base of the brain.
When Callahan began vomiting and holding the back of his head, his parents knew something was wrong. “We initially thought it was the stomach bug, but then Callahan started sleeping for more than 24 hours at a time,” explains his mom, Stacey. “Our pediatrician ordered an MRI and the tumor was found immediately. Three days later, he had his first brain surgery to remove the tumor. It was the scariest day of my life.”
Now, after two brain surgeries and six weeks of radiation, Callahan’s last MRI is clear and he is in remission. The ASK Childhood Cancer Foundation continues to be a “huge part” of the family’s survivorship.
Stacey says the events with other families going through a childhood cancer diagnosis help provide normalcy in the midst of chaos. “It’s wonderful for the kids to have one another in clinic and be able to make crafts, play games, watch TV and just be with other children who truly understand what they’re feeling. Without even speaking a word, the physicians and staff let us know that we are not alone in this journey.”
One of Callahan’s most prized possessions is a necklace he made in the ASK Clinic while waiting for treatment. It has a prominent place in his mom’s jewelry box to keep it safe. “Callahan continues to be sweet, and resilient and so full of life. He is a true gift every day and we can look toward the future,” continues Stacey. “We could never say thank you enough to all of the people of ASK for being one of our greatest blessings.”
Callahan at the ASK Kourageous Kids Party, September 2018
Callahan and his mom, Stacey, poise with his portrait, September 2018