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!”
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.
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.
“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.”
Here are three ways you can help to make the holidays brighter for our ASK kids and families:
1. Purchase a Toy for a Child
Help Santa get ready for the annual ASK Holiday Party on December 2nd where over 425 ASK kids, siblings and parents will attend. Purchase a new toy that is $25-$30 in price (no stuffed animals, please) and drop off the unwrapped toy by November 28th at the ASK office (5211 West Broad Street, Suite 102). We welcome your thoughtful gifts after that date, which we'll use for Santa's inpatient visits and to help our kids celebrate treatment milestones and birthdays throughout the year.
Not sure what to buy? Shop our Amazon and Walmart wish lists by using the links below. Also, our teens love gift cards! Their faces will light up when they see a $25 card to shop Target, Walmart, Amazon, Barnes & Noble or anywhere they choose with a VISA gift card.
2. Adopt-a-Family & Shop
This holiday season, ASK is planning to create joy for over 40 families of children with cancer in our community. Round up your family, friends or co-workers and help us make the wishes of an ASK family come true! Your generous gifts will alleviate stress while providing comfort to families taking care of a child with cancer. Here's how:
3. Don't have time to shop but want to help?
Make a holiday gift and let us do the shopping! A gift of $30 helps to buy a holiday toy for a child, $300 to adopt a family of two, $600 for a family of four and $1,000 will help us to make a mortgage payment or to pay a past due bill for a family who needs assistance.
On Sunday, September 9th, ASK and Governor of Virginia Ralph Northam honored thirteen of our brave patients and survivors with the help of WRIC's Morgan Dean at our Kourageous Kids Party at the Children's Museum of Richmond.
Our Kourageous Kids represent the more than 100 children currently on treatment in Central Virginia and the 500+ survivors in our community. Governor Northam also issued a proclamation declaring September as Childhood Cancer Awareness Month in Virginia.
"I think that we can always provide hope for children..for their families," shared Governor Northam. "And I remind people that if you take away one's hope you take away their will to live."
The Kourageous Kids exhibit is one way ASK is working to raise awareness about childhood cancer in our community. To see the exhibit, visit CMOR this week. Next week the exhibit moves to the atrium at The James Center until October 1st, then it will move to the Children’s Hospital of Richmond Pavilion until October 12th.
Alma Morgan is ASK's educational coordinator and director of summer fun. After planning and implementing 4 weeks of ASK Summer Camp, she sat down and reflected on her time spent with our ASK kids. We're grateful for all of our donors who help to make weeks like this possible for our patients, survivors and siblings.
A memory is defined as something we store or remember from the past; a recollection. As the fourth week of the ASK Summer Camp comes to a close, I can say that our patients and siblings will walk away with many happy, exciting memories of summer camp. While many of the children stated their favorite part of camp was making new friends, others shared their love of the various activities: Engineering for Kids, Laughing Yoga, Bricks 4 Kidz, Libbie Mill Library, Printing Studio Two Three, Rigsby Jig Dance, Johnathan Austin the Magician, and the VCU Pet Therapy Program.
As staff and educators at camp, we often think that we teach the lessons. However, after leading the morning discussion each morning at camp, I realized that the children are teaching us the lessons. They are teaching us that everyone needs a safe place to go and socialize in which the participants have shared similar experiences and have an understanding of what they have been through.
We have learned that the sibling may sometimes connect his or her identity to that of the brother or sister who had cancer. As one young man said, “The teachers want me in their class because Susie is my sister.” We had to make sure that this little guy knew that he was wanted in the new class because he was smart, kind, compassionate and a great kid, not because his sister had cancer.
We also learned that children often do not share their worries and concerns because they do not want to upset the parents. One child said, “I do not talk to my parents about what is bothering me because I do not want them to overreact.” I think overreact meant the same as get upset because these children have witnessed what it is like for parents to worry and become upset over serious, critical health issues. Children are protective and want to protect their parents.
Lastly, we learned that these children have many strengths and talents that often are not recognized. As staff, we watch in amazement as one breaks out singing with a voice of an angel, draws a picture that takes your breath away, writes a story that shows so much expression and creativity, or constructs a Lego structure that reminds you of an engineer.
Without a doubt, the four weeks of ASK summer camp will hopefully carry these children into the start of a good school year. When they report to school on the first day and have to share what they did for summer vacation, we hope they will share that they attended a summer camp for cancer survivors and siblings. At ASK Camp, they made new friends, played games, worked puzzles, did crafts, participated in various workshops, and left feeling loved each day. And as they grow older, may these memories of ASK Camp be stored as happy times and stay with them throughout their lives.
“Tiny leader,” “miracle,” and “dynamo” are just a few of the words friends and family use to describe Maiyah Tanner. Small in stature, but big in personality, Maiyah doesn’t let Diamond Blackfan Anemia get in the way of anything she’d like to accomplish. Diagnosed at 18 months, Maiyah is no stranger to clinic or treatment, and is proof that big things come in small packages.