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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?
 
  • 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.   
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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.
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.
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“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
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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:

  • Call ASK volunteer Joyce Heyer at 804-748-3898 to adopt a family. 
  • Joyce will begin matching families on November 10th and will provide shoppers with a wish list.
  • Please deliver wrapped and labeled gifts on December 17th from 12pm to 7pm to the ASK office (5211 West Broad Street, Suite 102)
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.
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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.
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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.
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​“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.
Maiyah was born with a hole in her heart, an indicator of Diamond Blackfan Amenmia, and wasn’t expected to live past six months.  Ladies at her church called her “miracle” and now at 16 years old, the name is still her hallmark. “Maiyah means ‘God’s creative power’ and anyone who meets her immediately loves her,” explains LaVerne Tanner, Maiyah’s mom.  “She’s lived with this her whole life, but thrives in spite of it.”
 
The youngest of six girls, Maiyah loves hanging with her sisters, but finds comfort in the friendships she's built with other ASK kids who understand what it’s like to live with a serious illness.  ASK is a family that has taught Maiyah how to advocate for herself, as well as have a deep compassion for others.  She loves being surrounded by other kids who share the same struggles and know what it’s like to be a hematology patient.
 
“We are so grateful to ASK for providing so many opportunities for Maiyah,” continues LaVerne.  “ASK not only deals with the kids, but with the whole family.  ASK is a huge part of our story.”
Maiyah's 2018 Kouragoues Kids Portrait
Maiyah is an active swimmer, cheerleading coach for the Chester Cheerleading Squad, and is looking forward to making friends as a new junior at Thomas Dale High School.  She can be seen at ASK events and as a camp counselor at ASK’s Summer Camp.
Maiyah spending time with other ASK kids during Summer Enrichment Camp, 2018
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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! 
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​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 britnih@askccf.org.
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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).
After several tests and brain scans, Maya was diagnosed with medulloblastoma, a rare childhood brain tumor.  Maya’s dad, Ronald, returned from his Virginia National Guard deployment in Kuwait in time for her surgery to remove the tumor.  ASK was there to help Maya and her family navigate their “new normal.” 
 
“ASK helped our family in clinic, providing activities and emotional support for Maya through diagnosis and treatment,” says Melissa.  “They made us feel like we were not alone and supported our entire family." 

Education about diagnosis and treatment, the psycho-social affects of childhood cancer, and medication information are just a few of the resources that ASK has provided for Maya’s family.  
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.
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