ASK Blog - ASK Childhood Cancer Foundation

Meet ASK kid Campbell

2/10/2021

ASK is an organization that truly makes life better for kids with cancer. Just spend five minutes with ASK kid Campbell who is one of ASK's biggest fans and an ASK kid now in her teens. Campbell was diagnosed with Acute Lymphoblastic Leukemia with the positive Philadelphia chromosome, a rare leukemia for children, when she was six years old.

Now 15, Campbell still remembers the first time she was introduced to ASK's special events and programs for kids with cancer. "It was so comforting to talk with other kids just like me, who knew what I was going through and to go to a place where I wasn't the only bald kid," recalls Campbell. "I enjoyed getting together with them, especially when we were at the ASK Summer Camp."

A week-long summer camp is just one of the programs that ASK provides for pediatric oncology children, held at the ASK administrative offices. When it began, campers could attend multiple weeks. However, as the number of children diagnosed with cancer or rare blood diseases increased each year, campers could only attend one week due to space limitations. That's just one reason why the new ASK Family Center is so critical for children with cancer and their families.

Campbell and Valentin at ASK Summer Camp

Meet ASK Education Coordinator: Alma Morgan

2/8/2021

"It's my job to make sure that all ASK kids know that they can be functional, contributing members of society regardless of their diagnosis or disability," lovingly states Alma Morgan, ASK's education coordinator and education team member at the Children's Hospital of Richmond. Alma's position is just one of the professional positions supported by ASK funding and a key member of the administrative team that keeps ASK kids on track academically, while in-patient or in clinic.

"I help them become advocates for themselves and tell their brave, courageous stories. It's vitally important that they be able to express themselves," says Alma.

"The kids love spending time with one another, sharing stories, studying together or just hanging out. ASK events and programs are a home away from home and a space where they can be themselves and accepted for exactly who they are and what they are experiencing," says Alma.

That's why she's so excited about the new ASK Family Center, which will provide additional space for programs and events. Soon, ASK will have enough space to expand programs to include college counseling, vocational training, independent-living skills and other educational opportunities that will address the unique needs of long-term survivors.

Miss Alma with ASK kids at ASK Summer Enrichment

Meet Game Changers: Doug & Sharon Keefer

2/1/2021

Doug Keefer attended a small fundraiser with his son, Ben, while visiting from California. Ben, one of the founders of Mustaches 4 Kids - Richmond, wanted his dad to hear about one of M4K's primary partners, ASK Childhood Cancer Foundation. After five minutes of listening about the purpose, programs and services in which ASK provides to pediatric cancer children and their families, Doug was "all in for ASK."

"I was so overwhelmed by the caring and targeted way ASK is able to touch families as they go through the unimaginable. I wanted to learn more and I knew I had to become part of their team," said Doug.

Meet ASK kid Grady

1/5/2021

Just six months ago, Grady was a very different little boy, always complaining of leg and stomach aches and sleeping much of the day away.

Today, Grady is a typical four-year-old boy who loves long nature walks, summers at the pool, and lots and lots of running outside. His mom, Daniele is abundantly grateful for his energy and enthusiasm for life. "Looking back at his short life, I realize he's always been kind of sickly, with several ear and strep infections, and flu and stomach issues," says Daniele.

When Grady and his family flew to Texas for Thanksgiving in 2019, his health took a turn for the worse and he was uncontrollably sick the entire flight back to Virginia. He never fully recovered from this episode and was eventually diagnosed in April 2020 with B-Cell Acute Lymphoblastic Leukemia, the most common type of pediatric leukemia.

Meet ASK kid Emmett

12/31/2020

"Your baby has Wiskott-Aldrich Syndrome," heard Malia Gregory. She was familiar with the rare gene mutation because her cousin passed away from the syndrome 25 years prior. Caused by a genetic mutation in the Wiskott-Aldrich gene and carried by the mother, one in one million boys are born with the abnormal immune deficiency disorder. Small and only a few weeks old when diagnosed, Emmett was going to show everyone how mighty he could be.

When Emmett experienced abnormal bleeding after his circumcision, and then again when he had a simple procedure on his tongue, doctors knew that something was wrong. Tests proved to be negative for leukemia, a natural assumption for Emmett's symptoms, but then Malia remembered her cousin, who had similar symptoms when he was born. Malia and her husband, Michael, had genetic testing, which showed Malia was the carrier for the mutated Wiskott-Aldrich gene.

Emmett immediately began aggressive chemotherapy to kill his existing bone marrow to prepare a bone marrow transplant. His then five-year-old sister, Eden, was the perfect match and at six months old, Emmett had his transplant. Today, Emmett is thriving with no presence of the mutated gene and his family is looking forward to his first birthday.

ASK Childhood Cancer Foundation has been with the Gregorys from the first day of diagnosis. "ASK has been a true God-send," says Malia. "Over and over again, ASK anticipates our needs as fast as they change. They know what we need before we have a chance to process what's happening and that's a God thing."

The Gregory family was introduced to ASK when Rich Catlett, the pediatric hematology/oncology chaplain, asked if he could pray with them. "Rich is so loving and such a Godly presence amid the chaos," continued Malia. "He's been our advocate and our liaison with hospital staff and he constantly reminds us that we can find peace rather than giving into fatigue and confusion. He represents Jesus for us in everything he does." ASK financially supports the chaplain as a child life specialist and child psychologist positions in the clinic.

As part of ASK's Adopt-a-Family program, Michael, Malia, Breyanna (age 14), Eden (age 6) and Emmett received gifts that filled the space under their tree. "We opened the door and ASK volunteers delivered giant gift bags - bigger than anything I'd ever seen - into our home. We thought this was going to be a sad and mopey Christmas, but ASK made it amazing. Instead, it was our mega-Christmas." Even Eden was overwhelmed by the generous support and said Santa didn't need to come this year because ASK took care of them. "Mommy, did they do this because I was brave and helped Emmett? We don't deserve this. I would have done it any way!" exclaimed Eden. "You can call Santa and tell him he doesn't need to come this year."

Emmett's sisters, Breyanna and Eden playing in the delivery bags.

Miss Katie, child life specialist and Miss Joyce, Adopt-a-Family coordinator drop off presents to Emmett and his family.

Meet ASK kid Skylar

11/19/2020

Leroy Reed is an adult survivor of Acute Lymphoblastic Leukemia, a diagnosis typically reserved for children. When his newborn baby, Skylar, began running a fever which spiked to 103.7, he knew from experience that something was wrong.

“We spent three days in another hospital’s pediatric ICU before we were transferred to VCU Health System. My wife, Traci, was completely overwhelmed. Having a cancer diagnosis for your child is a parent’s worst nightmare, but I knew once we were at VCU, everything would be OK” recalled Leroy.

At six weeks of age, Skylar was diagnosed with HLH, rare immune disease, in which the immune system no longer works properly by producing too many antibodies. In Skylar’s case, her body didn’t have an infection to fight, so her body started attacking itself. Leroy and Traci were told that no genetic link exists to Leroy’s previous cancer.

Skylar started chemo the day she arrived at VCU, which lasted four months until she had her first bone marrow transplant, bone marrow donated by a stranger. “We’ve been told Skylar’s donor is a 35-year old man who didn’t hesitate when given the chance to save our daughter. He’s our hero, and he gave enough marrow to last Skylar a lifetime, if she needs it,” chokes Leroy.

She did need it, having her second bone marrow transplant one year later. “Her engraphment started to decline, so we elected to have a second transplant,” explained Traci. “We wanted to be proactive this time, rather than reactive.”

After a second round of stronger chemotherapy, Skylar’s health is on the upswing. She still visits the ASK clinic twice per week and takes “medicine” each night at home, but now she helps administer the medicine by handing her parents the necessary equipment and pushing the syringe herself.

“She’s so resilient. She loves to imitate Beyonce, playing peek-a-boo and hanging with her big sister, Elana. And Elena is the best big sister ever,” gush Leroy and Traci. “Elana can calm Sky, when nothing else works. We would FaceTime Elana from the hospital and she would say ‘it’s OK, Sky. Big sister is here,’ and Skylar would be fine. They have a beautiful bond.”

ASK kid Skylar is lovingly embraced by her sister Elana during the Kourageous Kids photo shoot, July 2019.

The Reed family shares a bond with the ASK Childhood Cancer Foundation, as well.

“All of the ASK staff and care partners are amazing. Whenever I think of them, I cry,” say Leroy. “They’ve been with us from the moment we entered the hospital, through chemo treatments and lengthy hospital stays, and sat with us during both transplants. ASK has helped us financially by paying our mortgage and electric bill, provided gas cards and meal vouchers for the many days we’ve spent at the hospital, and delivered Christmas gifts to our home for both of the girls when Skylar was too sick to go to the holiday party. After they left, we sat in the middle of the floor and cried like babies. Tears of gratefulness, for sure.”

The family cheers on Skylar as she's recognized at the Kourageous Kids party, September 2019.

“And the ASK chaplain, had the ability to show up just when we needed him most,” continues Traci. “I would see him coming and I knew everything was going to be alright.” ASK financially supports the chaplain position, as well as a child psychologist and child life specialist in the clinic at the Children's Hospital of Richmond at VCU. “We are forever changed because of the kindness we’ve experienced.”

Meet ASK kid Connor

11/2/2020

Connor was diagnosed with Acute Lymphatic Leukemia (ALL) at age 3. He had more than four years of chemotherapies following a National Children’s Hospital protocol, but ALL couldn’t stop this bright and strong boy from becoming the talented young man he is today.

Now 17, Conner is an accomplished artist, attending his first year at the Virginia Commonwealth University School of the Arts for graphic design. His accomplishments didn’t come easy, and he’s worked for every accolade he’s received.

“Experiencing cognitive delays and the inability to fully focus are common side effects of some chemotherapies and steroid treatments,” explains Jane Gordon, one of the ASK Childhood Cancer Foundation’s First STEP Preschool and After School Enrichment program teachers. Jane met Connor in first grade when she was working then as an educational consultant for the Hospital Education Program.

“Connor had some processing issues but was very bright. It was recommended that Connor repeat first grade, but we knew that he just needed some help. That’s when Connor became a huge part of my life, and I’m honored to have played a small role in his success.”

Connor's Kourageous Kids Portrait on display.

Together, Jane and Connor studied for tests, Virginia SOLs, the SATs, his driver’s license test, and Jane even helped with research in art institutes for Connor’s undergraduate opportunities. Jane also attended every IEP meeting with his schools, providing critical input for Connor’s educational goals.

“My wife and Mrs. Gordon spent hour after hour working with Connor,” says Russell Tennessee, Connor’s dad. “Every time he passed his SOLs, it was time to celebrate. In fifth grade, Connor received the Fifth Grade Achievement Award, the highest distinction at fifth grade graduation. I cried tears of joy because I knew how hard he worked and that he was a young man of integrity. I credit my wife and Mrs. Gordon for that.”

Connor's awards and recognitions remain treasured keepsakes from his journey.

“We had great days and we had not-so-great days,” laughs Jane. “I became his tutor, sounding board, confidant and friend. I’ve always been so impressed with his ability to face difficult circumstances head-on, with determination and hard work. His faith in God is so strong and he prayed every morning before school.”

Praying is something else Jane and Connor are comfortable doing together. While attending an ASK Summer Camp, the children had to take cover because of a tornado warning. Connor asked Jane to pray with him because he was scared. “Well, now we can’t be worried,” said Connor after their prayer. “We prayed about it, so now it’s God’s job.”

“Mrs. Gordon is family,” says Connis Tennessee, Connor’s mom. “She’s Connor’s honorary grandmother and she was even in our family Christmas card picture one year. She knows Connor as well as we do and she is sunshine to us.” Jane jokes that she would follow Connor to the University of Hawaii if that’s where he chose to go. “I’ve always told him that I had his back if he needed me, and I meant it. I hope we have many more years together.”

The Tennessee Family with Miss Jane at an ASK Holiday Party.

Connor's goofing off at ASK summer camp made the Annual Report cover.

Connor attending College Bootcamp as part of the ASK Launch Project. (July 2019)

ASK funding supports online tutoring, an after-school enrichment program and the First STEP preschool program, which is one of only two preschools in the country dedicated to serving pediatric cancer patients. Jane Gordon has been with ASK for more than ten years, serving as a First STEP teacher, After School Enrichment tutor and Summer Camp helper.

“My background is elementary education with a Masters degree in learning disabilities. I get these kids and their individual needs, and I love my job,” gushes Jane. “I tried to retire but they wouldn’t let me! I’m so happy to be with these kids every day.”

“An experience like childhood cancer will either make or break a family,” says Russell. “We thank God for this journey he gave us, and for Mrs. Gordon. We asked God to take care of Connor and to let us love him, and not only have we loved him but so has Mrs. Gordon. She has given her time and love and things money could never buy. We have so much to be thankful for.”

Connor volunteered his time to help out at ASK Summer Camp. (2017)

Connor enjoying a game of Connect Four with Miles, friend and fellow ASK kid. (2017)

The kids at ASK Summer Camp loved having Connor to lean on. (2017)

Mrs. Gordon probably won’t retire any time soon, if ASK families like the Tennessee’s have anything to do with it. Thank you, Jane, for your tireless and selfless gifts of time and expertise and joy!

Ways You Can Help This Holiday Season

10/28/2020

1. Adopt-a-Family & Shop

Update: All families and young adults are now adopted - thank you for your big hearts! If interested in still lending a hand, we would be grateful for your support in shopping for a toy or gift card as outlined below.

Since COVID-19 started, 30 children have been diagnosed with cancer here in our community. ASK estimates that at least 40-50 families with a child on active treatment could use extra support during the upcoming holiday season. Adopters will receive a wish list from the family to shop from. Gifts will need to be wrapped and delivered by December 14th to the ASK office at 5211 West Broad Street, Suite 102. Drop-off times will be coordinated following social distancing guidelines. Your generous gifts will alleviate stress while providing comfort to families taking care of a child with cancer.

2. Purchase a Toy for a Child or Gift Card for a Teen

Help us get ready for this year's socially-distant ASK Holiday get-together by purchasing a new toy valued $25-$30 of gift card of equal value (Target, Walmart, Amazon, Michael's, Old Navy, DSW, Starbucks). No stuffed animals, please.

Toys and gift cards can be shipped or dropped off during a scheduled time by December 4th to the ASK office (5211 West Broad Street, Suite 102). We welcome your thoughtful gifts after that date, which we'll use for inpatient visits and to help our kids celebrate treatment milestones and birthdays throughout the year.

AMAZON WISH LIST

TARGET WISH LIST

3. Don't have time to shop but want to help?

Monetary donations to are always helpful to make sure no family is overlooked, especially those families diagnosed in December. A gift of $30 helps to buy a holiday toy for a child, $300 to adopt a family of two or $600 for a family of four.

Adjusting to the New Virtual School Year

9/1/2020

article written in partnership with Better2gether RVA, by Debbie Glasser, PhD

With the new school year just around the corner, many parents have more questions than answers about how to navigate the new world of virtual learning. These questions often take on additional significance for parents caring for children with special needs and chronic medical conditions. Such questions include:

Will the 504 Plan or IEP, Individualized Education Plan, be followed in the virtual setting?
Will the accommodations and services on the educational plans be addressed in the virtual setting?
If the virtual setting has the entire class participating, how can my child’s special needs be addressed, particularly if my child needs individual or small group instruction?
As a parent, how can I help my child with instructional material when I am not a certified teacher and do not know the curriculum?
How is it possible to keep a child with attention issues, focused and on task in the virtual setting for 4-6 hours a day?
As parents, who do we contact if we feel our child is falling behind or the virtual setting is not working?
Are the specialists, such as the reading or math specialist, available to work with my child?

Alma Morgan, M.Ed., an Educational Consultant for ASK and the Pediatric Hematology/Oncology Department at the Children’s Hospital of Richmond at VCU, hears questions like these every day, and she understands parents’ concerns. “Many children with chronic illness often have late effects of treatment that include: attention difficulties, short term memory challenges, and slower processing speed,” she explains. “In addition, we are seeing more anxiety than ever, for children, teens and even their parents.”

While Morgan is hopeful that teachers and administrators have been working hard to create an effective and meaningful curriculum for online learning, she acknowledges that there’s no such thing as a one-size-fits-all program, especially for students with chronic and complex medical challenges.

Parents may feel a sense of powerlessness about this new mode of teaching and learning, and wonder whether it will work for their child. However, there are things they can do to help support their child’s unique needs:

Keep a detailed log of how much instructional time your child is receiving. Morgan advises, “Make notes about what’s working – and what isn’t.”
Communicate. “Parents are encouraged to communicate on a routine basis with their child’s teachers and school staff,” Morgan says. “Right now, we’re just speculating what will work. That’s why parent feedback is so important.”
Be vocal. If parents feel like their child’s learning needs are not being met or their child is falling behind academically, they need to request a meeting with the school based team to discuss these concerns. A comprehensive evaluation may be needed to address specific areas of concern.
Be creative and flexible. “As parents and teachers work together, it may be helpful to introduce creative ways in multiple modalities to demonstrate mastery,” Morgan explains. “Each child has a unique learning style. Teachers need to come up with creative ways to show that learning has been achieved.” For example, your child might learn best by listening to a book on tape or acting out a story. The child might show comprehension of a book or story through a visual poster board project or a song rather than writing it in a standard book report form. Since students won’t be receiving the same access to specials like art, physical education and music, it can be helpful to roll these experiences into the curriculum of the core subjects. “This is a time unlike ever before,” Morgan says. “We need to dig deep, be creative, and do things differently.”
Request a modified workload, if indicated. “If parents are feeling like their child is overwhelmed, they can ask for a modified workload emphasizing quality over quantity,” says Morgan. “For example, can they show mastery by doing five math problems instead of ten?”
Pursue more specialized learning opportunities. If a child continues to struggle academically in the large group virtual learning format, parents can request individual instruction or small group support. “Talk with the teacher about this or request a meeting with the school-based team,” Morgan advises.
Seek additional support. If parents notice changes in their child’s mood or behavior, or have educational concerns, they are encouraged to seek support from their pediatrician and/or mental health professional. If an educational consultation is needed, call Alma Morgan at (804) 514-7897.

“Parents are going to have to be proactive and work closely with the teachers and school personnel to see that their child’s unique needs will be met in this new instructional setting,” says Morgan. “Now, more than ever, parents need to be actively involved.”

Meet ASK kid Lillian

8/19/2020

“This child has fight in her.” Words that Lillian’s family has heard more than once in her long battle with Actute Myloid Leukemia (subset 6).

Diagnosed when she was seven years old, Lillian’s leukemia diagnosis – usually reserved for the elderly population – is one of three pediatric-documented cases in the world in children. At every turn, Lillian has fought cancer, multiple affects of experimental treatments and chemotherapy, and most significantly, Graph vs. Host Disease common among transplant recipients, with grit and determination.

While living in Italy where her dad was working for the US Navy, Lillian experienced difficulty breathing. After several trips to pediatricians and emergency rooms, she was diagnosed with “some form of leukemia” and sent back to the States for an official diagnosis.

“Lillian wasn’t expected to survive the flight home or the first night in the PICU. The odds against Lillian were so great,” shared Tina, Lillian’s mom.

Within two weeks, a tracheotomy was inserted to help her breathe and she started chemotherapy. This was the beginning of a six-month hospitalization for chemo- therapy and physical rehabilitation, but Lillian defied the odds and continued to improve.

Until one year later, when Lillian’s leukemia relapsed. She had a life-saving bone marrow transplant, now sharing a unique bond with her older sister who was her donor. Lillian’s determination to beat cancer has been an inspiration to everyone around her, especially her mom.

“Over the years, we’ve watched her go from the sickest child in the hospital to a healthy 13-year-old,” says Tina. “Lillian is an identical twin and she’s fought so hard to keep-up with her sister physically and academically. She still has physical therapy for stamina, but she’s come so far, against crazy odds, and has never, ever given up.”

Photos: Lillian being flown back to the States for medical care.

Photo: Lillian beating cancer for the second time.

ASK has been working behind the scenes to provide both in-patient and out-patient clinic services for Lillian and her family, including chaplain support, summer camps and tutoring.

“Our kids have spent a number of birthdays and holidays in the hospital or in clinic and the ASK staff has always made us feel special,” continues Tina. “It is a very aptly named organization because, literally, all we have to do is ask for something and there is always a positive answer. Someone is always there to ease Lillian’s burden or just smile and say hello. We’re very lucky to have them, and are so grateful.”

Left: Lillian and Michelle working on a collage during ASK After-School Enrichment. Middle: Lillian and her mom, Tina, smile during the ASK Kourageous Kids Party. Right: Lillian and Michelle during the Kourageous Kids photo shoot, July 2019.