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ASK BLOG

STORIES OF  MAKING LIFE BETTER FOR KIDS WITH CANCER

Meet ASK kid Skylar

11/19/2020

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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.” 
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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.”
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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.”
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Meet ASK kid Connor

11/2/2020

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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.”
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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.”
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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.”
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The Tennessee Family with Miss Jane at an ASK Holiday Party.
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Connor's goofing off at ASK summer camp made the Annual Report cover.
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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.”
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Connor volunteered his time to help out at ASK Summer Camp. (2017)
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Connor enjoying a game of Connect Four with Miles, friend and fellow ASK kid. (2017)
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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!
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Ways You Can Help This Holiday Season

10/28/2020

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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.
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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.
MAKE A GIFT
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Meet ASK kid Lillian

8/19/2020

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“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.
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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.
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Photos: Lillian being flown back to the States for medical care. 
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.”
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Photo: Lillian beating cancer for the second time.
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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.”

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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.
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Launch Project: Meet Xavier

8/4/2020

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Charming. Talented. Motivated. A big dreamer with the ability to make those dreams come true.  Cancer survivor.  Xavier Kirkland is an 11-year survivor of Acute Lymphatic Leukemia (ALL), but he’s not letting anything stand in his way of becoming an acclaimed chef.
 
“I think of different plating options all the time,” laughs Xavier. “When I was diagnosed with ALL at age nine, I had no idea where my life would go or if I would even live to be 20 years old. Now I have a career plan and a goal of owning the best restaurant in Richmond someday.”
 
Xavier will graduate from the J. Sargeant Reynolds Community College’s Culinary Arts program in May 2021 and says that wouldn’t have been possible without the Launch Project program, one of the survivorship programs ASK provides for young adults.

 
“ASK’s Launch Project coordinator, Michelle Johnson, contacted me and asked if I’d like to go to J. Sarg to get my degree through the PAVE Program for Adults in Vocational Education.  I had to think about it at first, but then I realized that I love to cook and the Culinary Arts program would be a perfect fit for me.”
“We realized that we had educational programming and services for pre-school through high school childhood cancer survivors, but there was a gap for high school students wishing to attend college or vocational schools, and for those who were beginning their job search.  The Launch Project started four years ago to address these needs,” explains Michelle.
 
Michelle connects students to colleges, universities and trade schools. She also provides referrals to other service agencies, as well as works with potential employers and college campuses to help childhood cancer survivors who may need special accommodations as a result of their cancer diagnosis. 
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Michelle Johnson, ASK Launch Project Coordinator.
“We work as a team at the Children's Hospital of Richmond at VCU's Survivorship Clinic, so there is a pediatric oncologist, psychologist, social worker, educational consultant, nurse practitioner and myself assigned to each survivor.  Together, we support the survivor in determining educational goals, career strategies, job searches, and intervention when needed to allow for special accommodations.  We’re seeing huge successes for our kids.”
 
ASK keeps in touch with all patients well past the end of their treatment specifically to provide not only medical follow-up but social, educational and career services into young adulthood. “We host young adult retreats and regular activities to foster comradery,” continues Michelle.  “It’s a great way for our young adult survivors to connect with people who truly understand their unique needs into adulthood.”
Last year, ASK began a partnership with 1st Choice, a college counseling service in Richmond, VA, to provide a three-day college boot camp for high school pediatric cancer juniors and seniors and their siblings.  Topics for the seminar included everything from how to navigate and write essays for the Common College Application, to completing the FASFA financial aid forms and searching for financial aid. 
 
“It was an amazing three days for the kids and their parents, and we plan to continue the partnership this year,” says Michelle.  “Rachel Loving, owner of 1st Choice, is amazing with the kids and very intuitive about their specific and unique needs.  It’s one of my favorite programs provided through the Launch Project.”
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Rachel Loving with 1st Choice providing college counseling support to ASK's rising juniors and seniors, July 2019.
Xavier is just one of the many Launch Project success stories.  He’s currently going to school full-time and has an internship as a line chef at the Boathouse Restaurant in Rocket’s Landing.  ASK helped him purchase his chef uniform and knives to begin his internship, but Xavier has supplied the drive and determination necessary to succeed.
“I think about the people in the ASK Clinic every day, and every day I am grateful for the smiles, hugs and true care and concern I continue to receive from the ASK folks,” says Xavier.  “They have impacted my life in so many ways, and now it’s my turn to give back to all those kids who are just starting their ASK journey.”
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These days, Xavier serves up good food, and these words of wisdom:  “I want them to know that they will feel like giving up, but they should never give up.  I felt like an outcast because none of my friends could understand what I was going through when I was on chemo, but you’re not an outcast.  Do what you want to do.  Be who you want to be.  I had to let that notion sink in, but then I realized that I can do whatever I set my mind to do.  So can you.” 
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Meet ASK kid Kayleigh

7/14/2020

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Courageous.  Spirited.  Happy.  Passionate.  All words that describe Kayleigh, a twelve-year-old girl who also happens to have cancer.  Kayleigh was diagnosed last year with Metastatic Ovarian Cancer, or “Yolk Sac,” stage 3, a type of cancer only seen in one percent of diagnoses worldwide.
 
In spite of her constant chemotherapies, multiple surgeries to remove tumors as they spread and radiation treatments, Kayleigh continues to enjoy playing with her sisters and cousins, keeping-up with schoolwork, and is a gifted artist.  “I love anime,” explains Kayleigh.  “I love making-up characters and stories.  It’s relaxing to draw, and I enjoy Cosplay and dressing up as some of the characters I create.”
 
Kayleigh’s cancer is spreading, but she is a fighter.  “I’m not done yet.  I’m not giving up,” defies Kayleigh.   She understands that her tumors are unresponsive to treatments, but is committed to living life to its fullest and will soon start another trial of chemotherapy in hopes of slowing the growth.  
Kayleigh’s mom, Ashley, says it’s important for her to be part of the decision-making process.  “It’s her body and we have all medical discussions with her so she can ask questions and have input.  Her maturity and ability to make difficult decisions at such a young age absolutely amazes me.”
 
An inspiration to all who meet her, Kayleigh’s spunk and grit keep her strong.  “Even when she feels awful, she has a smile on her face.  She just keeps pushing through the pain.  That kid is a force to be reckoned with,” exclaims Ashley.
 
“When we’ve needed help staying positive, ASK has been with us to lift us, support us, provide financial assistance and pray with us,” continues Ashley.  “Little things like random gift cards in the mail, treasure boxes for the girls when we’re in clinic, the back-to-school shopping spree, food vouchers for when we spend all day in clinic or when Kayleigh is in-patient, and fun activities like Prom have been our lifelines throughout this process.”
 
Eleanor Roosevelt described courage as “grace under pressure.”  Kayleigh is a powerhouse of courage, grace and life, and an ASK kid who’s showing everyone how to live through your most difficult moments with a smile. 
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Kayleigh gives her sisters a hug during the ASK Kourageous Kids photo shoot, July 2019.
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Kayleigh and Miss Katie, ASK's child life specialist, enjoying the clinic Valentine's Day party.
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Meet ASK kid Ava

6/11/2020

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“I have a princess room!” yells Ava as she enters her newly decorated bedroom.  Thanks to the generosity of the Richmond Homearama sponsored by the Home Builders Association of Richmond, a long-time partner of ASK, Ava received a total room make-over.  Each year, HBAR donates Homearama proceeds to ASK and participating builders in the show sponsor room make-overs for ASK kids who need a boost in spirit. 
Ava was diagnosed with Pre-B Acute Lymphatic Leukemia when she was 15 months old.  She had flu-like symptoms, but when her mouth started bleeding and she developed petechiae, both common symptoms of ALL, her pediatrician sent her to VCU where she was immediately diagnosed.
 
Like all ASK kids, Ava is a fighter. She has survived many lengthy in-patient hospital stays, multiple chemo changes as her protocol evolves, two port surgeries, blood clots and now daily shots of blood thinners, PICC lines and spinal taps.  Now three, she seems to take it all in stride and even helps the nurses in the ASK Clinic set-up her shots, blood tests and chemo.  


“She’s smart and catches on quickly to procedures,” says Ava’s mom, April.  “She’s handled everything much better than many of the adults in her life."
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ASK kid Ava enjoyed a tea party during her dream room reveal with Schell Brothers and designer Shannon Tootle, May 2019. 
“So much was thrown at us in the beginning,” continues April.  “We’re trying to understand the medical terms and help our child, and work, and it’s all very overwhelming. Then ASK staff showed-up with information, and financial support for our meals, and presents for Ava, as well as helped us emotionally deal with everything.”
 
ASK-funded chaplain, Rich Catlett, checks-in daily or weekly depending on the family’s needs.  “He prays with us and for us and that means more than I could ever say.  Mary Jo (ASK's family support coordinator) makes us feel welcome in clinic, sends cards and gift cards in the mail to us and to Ava, and Katie (ASK's child life specialist) always has something to keep Ava occupied while we’re waiting to see a doctor.  We couldn’t do this without them.”
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Ava gives a big smile during the Kourageous Kids photo shoot at the VMFA, July 2019.
Ava received a special surprise for her third birthday when friends and neighbors hosted a parade past her house. Both Rich and Mary Jo were part of the parade.  “They help make an awful situation so much better, and are just great people.  We can’t wait to returning the love once we’re in a better place.”

This year, Ava is looking forward to participating in more ASK events, like the Build-a-Bear day, the Holiday party, and the annual Mother-Daughter Spa Day.  “She was too sick to do many of the activities in her first year of diagnosis, so there are so many activities we want to do.  We were able to participate in the Spa Day,” shares April.  “It was one of her best days!”  
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Ava wore a sparkly mermaid outfit to her surprise birthday parade, May 2019.
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Meet ASK kid Holden

5/26/2020

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When Holden was nine months old, his parents thought his low-grade fever was a cold or maybe strep throat.  But a simple blood test showed an abnormality and within hours of being sent to the emergency room, Holden's entire young life changed.
 
Holden was diagnosed with Acute Myeloid Leukemia (AML), but this wasn't his family's first experience with this disease. Holden's dad, Josh, was diagnosed with AML in 2006 when he was 19 years old and carries the CEBPA genetic mutation for the disease. 

Holden's treatment included six months of intensive chemotherapy and long weeks of hospitalization.  ASK became a lifeline for the family, and providing spiritual, emotional and financial support.
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​"We’ve been social distancing before there was social distancing,” says Holden’s mom, Jess.  “Initially, we couldn’t participate in the fun activities ASK offers for patients and their families because Holden was in the hospital or going to the ASK Clinic two or three times per week.  We felt so isolated from family and friends, and that’s when the folks of ASK became so important to our family.”

Like many ASK families, Jess and Josh had to make the decision for one of them to stay home to manage Holden’s healthcare.  Within days of Holden’s diagnosis, Jess quit her teaching job and they became a one-income household.  

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​“We were so worried about finances and then we heard that ASK helps families financially.  ASK paid two mortgages and some of our electric bill.  What a huge relief!” 

“Our ASK family is always in here for us.  Whether it’s surprise gift cards in the mail, remembering our birthdays, or just a smiling face in clinic when we’re having a bad day, ASK is always working in the background to support our entire family.”

Holden’s four year old sister, Piper, attends First STEP Preschool at First Baptist Church.  First STEP was designed to meet the unique educational, social and emotional needs of young children with chronic illness, and includes siblings. 
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“ASK is this amazing organization that provides such a wide variety of programs and services for families diagnosed with a childhood cancer,” Jess continues. 

​“They get what’s most important -- not the stuff, but the caring and connection.  Everyone is so helpful and caring.  Respite care on my birthday, mother-daughter spa day that made our daughter feel so special, and just having someone who truly understands our situation is a so comforting. Holden is in remission right now, but we don’t know what the future holds for him.  We do know that ASK will be with us every step of the way. “
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Meet ASK kid Talon

4/7/2020

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“When we received the initial cancer diagnosis, we were completely overwhelmed,” recalls Gentry Busic.  “ASK became an amazing partner, without whom we could not have found our way.”
 
Gentry’s son, Talon, was eight years old when he was diagnosed with Stage 1 Large B-Cell Lymphoma.  After weekly chemotherapy treatments and three spinal infusions, Talon entered remission and hasn’t looked back. 


Now 10 years old, Talon plays baseball, loves to be outside on his bike, swims for his neighborhood swim team, and is crazy about Disney.  His family is grateful for his recovery, and the constant care they received from ASK.

“We know that we couldn’t have gotten through such an ordeal if it weren’t for the constant love and support from the staff of ASK.  Little gifts and notes and even just a kind word, not to mention the patient services and support groups that ASK provided to our entire family, were vital to our success.”

Gentry stresses that ASK is a local organization, and your donations help kids here in Central Virginia.  “I think it’s so important that we support this amazing organization that is going above and beyond for children with cancer right here in our community,” continues Gentry.  It also means that ASK can create and modify programs to best serve patients and survivors in our community.
 
“Our support from ASK began from the moment of diagnosis,” says Gentry.  “ASK knew that Talon’s diagnosis would affect our entire family, so their sibling and caregiver programs have been as important to us as the care they’ve given to Talon.  We could never say thank you enough!” 
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ASK Honored with Richmond History Makers Award

3/12/2020

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On March 10th, 2020, ASK Childhood Cancer Foundation was honored with the Richmond History Makers Award under the category of "Creating Quality Educational Opportunities."  ASK was one of six local nonprofits and individuals recognized for their work in our community.  The awards are given out each year by The Valentine Museum.  ASK Executive Director Amy Godkin and Educational Coordinator Alma Morgan received the award on behalf of ASK's education team. Alma has been an educational consultant and passionate advocate for pediatric cancer patients and survivors in our community for thirty years. ASK provides educational support services from preschool through post-secondary for patients and survivors in Central Virginia. ASK also provides educational support across the state through its educator conferences, educational toolkits and advocacy work.
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