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.
This week ASK is kicking off its first Summer Enrichment Camp specifically for siblings. This is just one way ASK is supporting siblings who have a brother or sister going through treatment. Dr. Jennifer Rohan, Director of Psychosocial Clinic Care & Research (an ASK-funded position) at the ASK Pediatric Hematology/Oncology Clinic at CHOR on why it is important to support siblings:
When a family member is diagnosed with a chronic illness, the illness impacts the entire family, not just the patient. Siblings of patients often report increased psychological distress, including anxiety/worry, fears, stress, depression, sadness, irritability, and anger. Siblings often report decreased quality of life. Some siblings may also expressed increased guilt that they did something to cause their brother or sister to develop an illness. It is very important for siblings to be given education about what to expect, how things may change, and have many opportunities to ask questions along the way. It also is very important for the entire family to maintain increased structure and daily routines so that things can remain “as normal” as possible. It also is very important to prioritize 1:1 time with both the child/adolescent who is sick, but also with children/adolescents who are healthy.
Siblings should be given lots of opportunities to engage in activities by themselves so that they can maintain some level of normalcy (when possible). Patients, parents, and siblings will often report feeling like their lives have been turned upside down so opportunities to forget about clinic visits, hospital visits, and illness are very much needed and appreciated for everyone! Siblings often benefit from support groups or being able to talk with other siblings who are going through similar things. The ASK Sibling Camp will offer all of this and more!
This week ASK is helping some of our rising high school juniors and seniors get a head start on their college application process through our first College Prep Workshop. This three-day program was organized under The Launch Project, our newest initiative aimed at helping teen and young adult survivors successfully navigate life after graduation.
Our survivors are completing their Common Application and developing their essays for submission through a workshop led by Rachel Loving of 1st Choice College Counseling.
College application assistance is just one way The Launch Project is encouraging the growth and development of our emerging adults this year. This fall we will be offer another workshop in partnership with Goodwill Industries that will focus on job seeking skills. We will cover topics like resume building, job application etiquette and interviewing skills. The Launch Project also continues to offer individual coaching to patients and survivors.
ASK currently has 22 participants in The Launch Project. If you’d like to learn more about the program, please contact ASK’s Launch Project Coordinator Britni Higginbotham at firstname.lastname@example.org.
Melissa Smith describes her 11-year old daughter as a ball of energy, so when Maya Smith began having headaches, vomiting and sleeping unusually long periods of time, Melissa knew something was wrong.
A few weeks after being diagnosed with migraine headaches in March 2017, Maya’s vision became blurry and she felt pressure behind her eyes. An optometrist found fluid behind Maya’s eyes and immediately referred her to the emergency department at Children’s Hospital of Richmond at VCU (CHoR).
Maya particularly enjoys the support group for kids with cancer that is hosted at Penny Tree Place, ASK’s administrative office located near Willow Lawn.
“Maya is really looking forward to Prom this year,” says Melissa. “Dancing is what she loves.”
Maya, a lover of ballet, tap, lyrical and pointe, hopes to return to dance class as soon as possible. In the meantime, she dances when she can and continues to impress her physicians by accomplishing balance and cognitive milestones in spite of her treatment.
This spirit carried her through her first radiation treatment – the day of her brother’s high school graduation – and will sustain her through chemotherapy treatments that will end in early Fall 2018. Maya is looking forward to returning to school and dance class when she finishes treatment.
Congratulations to the Class of 2018!
On Friday, June 1st, ASK hosted its 20th Annual Graduation Celebration to recognize graduating high school patients and survivors who have achieved academic success while persevering through treatments for cancer and blood disorders.
This celebration was organized by Alma Morgan, ASK’s educational consultant. When speaking with our graduates this year, Alma was cited as a constant factor that helped them achieve everything up to this point in life. She has served at VCU hospital for 30 years and has organized this graduation celebration for over 20 years.
Travis Compher, one of our 2018 graduates who will likely be attending trade school in the future, described Alma as someone that was always there for him, keeping him straight and focused. Another 2018 graduate, JayQuan McNair will head straight into the workforce after graduation. He explained that Alma is always around to help people.
Congratulations to our 31 graduates from around Central Virginia! You did it!
ASK kid Caleb was diagnosed Stage IV High-Risk Neuroblastoma in February 2017 at the age of 3. Last April, Caleb was in the hospital and was just starting his 14-month long treatment journey. He and his family were unable to attend the annual ASK 5K & Fun Walk which brings together ASK's kids and families for a day of celebration and remembrance. This year was different. Read on for Team Caleb's story as shared by ASK mom Kimberly.
From Chaplain Tom David’s first visit during our scary first hospitalization (who by the way has spent time with us every single hospitalization including some clinic visits) to Katie’s first visit to Caleb during his first clinic visit, always providing the red DVD player and the DVD collection to Caleb--and ALL of the support we have received from ASK over the past year from encouraging notes in the mail and gift cards to fun events for the kids – we were welcomed into this family with open arms! And as most of you know, when you are thrust into such a scary new world that is childhood cancer, having this kind of support is crucial.
We weren’t sure if we should go the standard treatment route or head to Sloan, CHoP or somewhere else. We traveled for other opinions. We ultimately decided to complete treatment here at home at VCU. Caleb ended up having a successful surgery on June 7, 2017 and went on to spend most of his summer in the hospital enduring two stem cell transplants, 12 radiation treatments in the fall and then six rounds of immunotherapy in the hospital throughout the winter. And on April 17, 2018 he took his last treatment dose.
Caleb will start a clinical trial in a few weeks to help keep him in remission but it will be a breeze compared to everything else he has been through. We have had a tough year, but we have been able to see the blessings more than anything else.
We now have a cancer family! We have supported each other, even if just by following each other’s journeys, in prayer or in passing in the halls of the hospital. Some kids are doing well and Caleb’s health has been restored, but still others we’ve lost. Some we followed their pages. Some we just met their parents. Each passing we felt deeply. It was personal. Many of these kids have walked this walk before.
This is not fair and this fact keeps us from celebrating too wildly. There is just too much heartache that we feel for these parents. And really, there is always that nagging fear deep inside that Caleb’s cancer might return. We watch him play in the backyard, up to his ears in mud wearing his fireman rain boots pushing his dump trucks around. We see him dancing in the living room. Antagonizing the pets. Driving his sisters crazy. But it’s what we don’t see that tends to overshadow our joy. Fear creeps in as we wonder what could be brewing just beneath the surface. It’s never ending. This is our life now, but we can’t sit in fear. We must keep moving forward.
This month’s staff spotlight is on our chaplain, Tom David Siebert. ASK mom Venus perfectly expresses why Tom David is an invaluable member of the pediatric hem/onc psychosocial team at Children's Hospital of Richmond at VCU.
When I think of some of the difficult moments during our journey, I am reminded of the blessing of Father Tom David. Father Tom David is incredibly soft spoken, but equipped with a strength and calming presence that spoken or unspoken is reassuring.
I vividly remember the day I had to sit through another bone marrow biopsy anxiously waiting for the team to arrive to perform the procedure. I expressed to Father Tom David how much I didn’t want to be there and I remember him finding a chair to pull into the room to sit there with me shielded behind the curtain, sharing a word of encouragement and a quick prayer that helped to still my heart and thoughts.
Mireya was quite young during most of her active treatment, but she fondly remembers visits with Father Tom David. I along with many families are thankful for the importance of his call and his role on the ASK team. It was and continues to be a joy to see him (and his collection of bowties) visiting with families and children.
Sophia Bonner-Armstrong is a typical fifth grader. She likes to read Harry Potter books and Shel Silverstein poems. She’s an avid crafter who fires up her glue gun regularly. She loves fashion and music and making her own videos with the popular social media app Musically. She’s a fan of “Stranger Things” and Steph Curry — she loves Steph Curry.
What’s not so typical is that since July 20, 2016 when she was diagnosed with Langerhans cell histiocytosis (LCH), Sophia has been in treatment for this rare type of cancer.
Sophia’s symptoms started with a swollen eye. Doctors thought she had cellulitis and at first, the swelling responded to antibiotics. But when the swelling returned and persisted, further investigation revealed a tumor located behind her eye. And attached to her brain’s outer membrane.
Less than two weeks later, after surgery to remove the tumor, Sophia started a 13-week regimen of weekly chemotherapy treatments, high-dose steroids and antibiotics., then chemo every three weeks for a year.
After the first five rounds of chemotherapy Sophia entered Pemberton Elementary for her first day of fourth grade.
“Some of the kids she went to school with didn’t even know she had cancer,” her mom, Debbie, says. “They found out at the end of the year at an awards assembly. I don’t think she knew how strong she was. She really is tough.” Sophia missed only a handful of school days and finished the year with all As and one B.
Deborah credits Alma Morgan, ASK’s educational consultant, for setting Sophia up for academic success. “Alma didn’t play,” Deborah says. “She got her plan together with Pemberton very quickly so they had a good understanding of what Sophia’s needs would be. Alma gave them everything they needed to know.”
Sophia began attending ASK’s after-school tutoring program which also helped her keep up with the fast-moving fourth-grade curriculum. Not only does tutoring help her academically, but through these weekly sessions, and through other ASK activities, Sophia has made friends who are also dealing with the challenges of childhood cancer.
“Sometimes it makes me see that I am not doing that bad,” she says. “I can relate to the other kids.”
Deborah also credits child life specialist Katie Barber with making the experience of cancer treatment just a little bit easier. “Katie was the first person with ASK that we met and she was such a blessing,” she says. When Sophia was scared about having a port installed, Katie introduced her to another child her age at clinic who showed her his port and told her it was no big deal.
“It eased her mind,” Deborah says. “From pretty early on, ASK was there for us. … It’s how we met some of our support people. I had never heard of ASK before, but now I tell as many people I can about it.”
Though the journey through cancer treatment is arduous, ASK provided some bright spots. Sophia is proud to be featured as a Kourageous Kid. Last year, she and he mother participated in the ASK 5K and Fun Walk, and will do so again this year. She’s also looking forward to attending camp this summer.
And Sophia even got to meet Steph Curry. The video of Sophia embracing him, in tears, on center court, went viral last year, and was shared by the NBA.
“Cancer puts things in perspective,” Deborah says. “It makes you decide what’s important.”
While ASK’s mission is to make life better for kids with cancer in Central Virginia, we recently had an opportunity expand our reach and help pediatric cancer patients and survivors from across the state.
Working together with the Virginia Childhood Cancer Work Group, ASK helped organize Virginia Childhood Cancer Awareness Day at the General Assembly on February 15th. In addition to ASK, the VCCWG includes representatives from major pediatric cancer treatment centers from around the state – Children’s Hospital of Richmond at VCU, Carilion Children’s at Carilion’s Clinic, Children’s Hospital of the King’s Daughters and University of Virginia Children’s Hospital.
Our awareness day started bright and early with a kick-off breakfast at the Children’s Hospital of Richmond at VCU where advocates received their key messages and meeting assignments. Our eighty advocates then walked across Capitol Square to the General Assembly where they spent a busy morning meeting with legislators and their staff. Our focus this year was to make sure that folks learned about how many young Virginians get cancer each year, the challenges that they face and the lack of state resources to support them.
“The awareness day was such a great opportunity to educate our state’s leaders. The delegates I spoke with seemed surprised at the lack of support, and hopefully our efforts planted a seed for change” said Jeff Hennessey, ASK dad and advocate.
It was inspiring to see parents, patients, survivors, doctors, social workers and other community advocates from around the state all come together for a common cause. We hope that this will be a first step toward raising the level of care for all pediatric cancer patients and survivors in Virginia.