STORIES OF MAKING LIFE BETTER FOR KIDS WITH CANCER
Let's make their holidays bright!
During this festive season, as your family begins making holiday plans and wish lists, we hope you’ll consider supporting an ASK Family right here in RVA. Your generous donations will help to alleviate stress for families taking care of a sick child and will allow our ASK kids to be what they should be – kids! Kids who are able to attend a holiday party with their family. Kids who get to visit Santa. Kids in the hospital who get to unwrap a new toy they love.
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 3rd where collectively 400 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 24th 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 wish list by using the link below. And, by the way, our teens love gift cards! Their faces will light up when they see a $25 card to Target, Walmart, Game Stop, Amazon, Barnes & Noble, or a VISA gift card.
2. Adopt-a-Family & Shop
This holiday season, ASK is expecting to serve more local families of children with cancer than ever before, so 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 and joy to families taking care of a child with cancer. Here's how:
3. Don't have time to shop but want to help?
Make a holiday gift and let us do the shopping! A gift of $30 helps to buy a holiday toy for a child, $300 to adopt a family of two, $600 for a family of four and $1,000 will help us to make a mortgage payment or to pay a past due bill for a family who needs assistance.
Thank you for your kindness this holiday season!
ASK is family to us
It was October 2016 when Becky was doing her Saturday morning bath routine with Zuri and her younger sister. She noticed how Zuri’s stomach didn’t look normal. It was disproportionately large for what it should be for a 5-year-old.
Becky’s intuition said something was wrong, so she gently pushed on Zuri’s tummy and asked if she could feel any pain. Zuri, in her typical care-free way, expressed no pain.
An hour later, Zuri was no longer the strong, happy kid. She was complaining of stomach pains and crying. That was the cue to head to the emergency room.
The doctors took the immediate steps of an x-ray, then an ultrasound, and finally a CT scan which showed a mass tumor surrounding Zuri's left kidney. Four days later, a biopsy was scheduled and the diagnosis was confirmed: Wilms Tumor, a common cancer in children that starts in the kidneys.
Wilms tumors often become quite large before they are noticed, and the doctors believe that Becky pressing on Zuri’s tummy moved the tumor so that she could finally feel it. Zuri's cancer had spread to her lungs making it a stage IV diagnosis. About 10% of all Wilms tumors are stage IV so it's no wonder that "our little fighter" is how Becky refers to Zuri.
How do you tell a 5 year old they have cancer?
Becky shared that Zuri was a trooper throughout it all. Initially, from the outside, no one knew she was a sick child. But she was and she didn’t understand why she was going to the doctor all the time.
“You’re sick in a different way,” Becky would explain to her. “You don’t have a cough or cold, but you’ve got to go to the doctor to get better.”
Just like many kids in her shoes, Zuri quickly came to learn about chemo, taking care of her “button” [chemo port] and knowing her way around a hospital – although, that, too changed for Zuri through her treatment.
The family had moved from Northern Virginia and was temporarily living in Roanoke with family while Zuri's dad started a new job in Richmond. It was in the midst of the family's transition that Zuri was diagnosis and started treatment at a local hospital. Zuri's parents wondered if she should finish treatment before making the move to Richmond, but her medical team encouraged them to continue with their move, knowing they’d be in good hands at the Children’s Hospital of Richmond at VCU.
Keeping a Routine
Becky was determined to not let going to clinic for a day disrupt the routine and normalcy she worked hard to maintain for Zuri, her younger sister, and her now baby brother. It wasn’t ever a surprise for Katie, ASK's child life therapist, or the nurses to find the family in their room, with the lights out, for their designated nap time.
But there are moments for children with cancer that simply are not normal and can’t be stopped no matter how much a mom may try. For Becky, those moments included the agony of seeing Zuri struggle with losing her hair, handfuls at a time, and hearing about classmates who weren’t always kind.
“They don’t want to be my friend” was something Becky often heard from Zuri who struggled to be a “normal” kid.
Friends Who Understand
Crafting and talking about fun times while at clinic was how it all started for Zuri and Katie’s friendship. For a little girl known to be shy, she warmed up quickly to Katie, ASK’s child life therapist.
“It makes it easy,” is how Becky describes the amenities and care the family receives at clinic. “I don’t know how normal clinic would be without ASK and Katie there… Katie is entertaining, talkative and jokes with Zuri.”
But, Zuri wasn’t so sure of her new friend when Katie invited her to ASK’s summer camp. She was scared and worried, in part because she thought camp was out in the wilderness but also thinking thoughts no 6 year old should ever have: “people will laugh at me” and “no one will like me.”
It didn’t take Zuri long to find several new best friends at ASK summer camp, including Lhea, Olivia and Campbell. In addition to seeing familiar faces from the clinic, like Katie and Tom David, Zuri left that week knowing that there are other kids like her – some bald, some wearing a face mask, some needing to take a breaks throughout the day. Everyone there understanding, as everyone has been there at some point.
Summer camp may be over, but we’re so happy to see Zuri’s big smile and to hear her adorable giggle as she catches up with her new friends at other ASK programs.
Returning to the Classroom
Advice by Alma Morgan, ASK Educational Consultant
We recognize that a child with cancer returning back to school can sometimes feel overwhelming. The following information is intended to provide advice and resources available through ASK to make the return to school more comfortable for you and your child.
3. Find balance between academics, activities and home life.
Sometimes parents try too hard to get back to "normal" after their child's cancer treatment. Kids are shuffled from school to soccer practice to dance to piano lessons. I often hear kids say, "I just want to be home." And, that's okay. This isn’t necessarily a sign that your child is experiencing social anxiety or that it's a setback. Keep tabs for whether that's the case or if the extra activities are too much. You don’t have to go, go, go to be “normal.”
4. Don't spend hours on homework.
No, the kids didn't pay me to say that. I truly believe that kids shouldn't come home from a full day of school and spend hours on homework. Similar to the advice above, our kids need a break and the chance to be a kid again. Play a video game, go for a walk, or let them read. It's okay to step away from school work and to take a break. During ASK's weekly after school enrichment program, we incorporate both homework help/tutoring with a chance to play games and hang out with other kids who have been in their shoes. After school will start-up the first week of October. Click here if you're interested in learning more.
5. Strive high!
We must not do our children an injustice by expecting less from them because of their diagnosis or treatment. Parents sometimes shelter their child and don’t push them to reach their full potential. Striving high for them helps to create normalcy.
Providing a Chance to Play
For children with cancer, simple illnesses can be dangerous as chemotherapy suppresses their resistance to ordinary childhood viruses. So preschool, playdates and other social outings are not always an option.
At First STEP (Socialization Through Enriched Play), our kids can learn and play with each other safely. Precautions are taken, like using hand wipes throughout the day, and we understand when attendance is interrupted due to medical treatment.
Families at First STEP are connected to caring teachers like Miss Jane who help our youngest patients and survivors (and their siblings) get back a part of their childhood they otherwise would have lost due to cancer. Mornings filled with free play, circle time, and arts and crafts are the memories we want our kids to have, versus visiting the hospital and being isolated at home.
Suffice it to say, our ASK kids and their siblings are in extremely capable hands when Miss Jane is helping them. We are grateful that she's chosen to share her valuable experience with our ASK community!
Click here to learn more about First STEP.
Behind the scenes with ASK kid Jonathan
Written by Amy Godkin, Executive Director
Courage in Action
One very warm summer day in late June, I visited a photo shoot at the VMFA for ASK’s upcoming Kourageous Kids exhibit produced by Commonwealth Photography. Aimed at raising awareness about childhood cancer in our community and ASK’s programs, the exhibit coincides with September’s National Childhood Cancer Awareness Month.
At the shoot, I had a chance to hang out with ASK kid Jonathan, one of our portrait stars, and his mom Keondra. Jonathan's signature look of a matching hat for his outfit speaks to his sense of style, which made it easy for James Clark, owner of Commonwealth Photography, to capture his big personality, just as he does for all of our kids.
In between hearing James tell Jonathan, "You're looking handsome! These are going to turn out great!" and finding a shady spot to stand in with Keondra, I learned that Jonathan has braved not one but two bone marrow transplants since being diagnosed with Neuroblastoma. He has endured months of recovery, even having to learn to walk again.
This was heart-crushing to hear as Jonathan loved to play soccer and was a goalie before his cancer diagnosis. He was also active in riding his dirt bike. Jonathan has kept a positive attitude though throughout his treatment and is looking forward to enjoying his favorite outdoor activities.
I invite you to come see Jonathan and all of our Kourageous Kids this September at the following portrait display locations:
Children’s Museum of Richmond: September 10th – 11th
1 James Center Lobby: September 11th – 22nd
Children’s Pavilion: September 22nd – October 6th
There will be others ways throughout September for you to show your support for children with cancer and to help to make their life better. Follow us on Facebook and here on the blog as we Go Gold for our ASK kids and families.
The Professor Q&A
Strength + Guidance
He's already one month into his new role and we are so grateful that Josh Kugelman has stepped up to lead as ASK's new president of the Board of Directors. Josh began his service with ASK in 2009 as a volunteer, helping at the ASK Walk and serving on a committee.
"I have been blessed to have two children who have not needed the services of ASK, but when I first learned about this organization (my kids were 6 and 4), I thought: What if tomorrow, I heard the words 'your child has cancer?' I would want a group like ASK there to support me," shared Josh.
Josh follows in the footsteps of Jodie Kitchens who served as president for the past two years, as well as participated as an ASK volunteer for years before that. While she is often seen enjoying our fun events with families, Jodie has never shied away from embracing and supporting our bereaved families, too. Her passion, commitment, and vision have set an example for us all.
Josh has big shoes to fill but we know his thoughtful management style, great sense of humor and most important, strong support for ASK's mission will guide us in how we respond and grow to improve the lives of children with cancer and the lives of the survivors of childhood cancer.
"When you see the challenges that present themselves to these beautiful children and their families, it is virtually impossible not to want to join in and help," Josh explains.
Life comes at you fast when you’re diagnosed with a life threatening disease and support is essential to survival. That's why we couldn't ask for better leadership than Josh for helping us to carry out the mission of making life better for children with cancer.
So, the next time you see Josh at one of our events, please say hi! And, if you're interested in ways you can share your time and talent, please click the button below. We welcome you to join us as a volunteer.
The sky is the limit
After complaining of stomach aches, Mark's parents took him to the emergency room where tests and surgery followed. It was then, October 2015, that Mark learned he had cancer. Two days later, he began an aggressive chemotherapy treatment protocol for Burkitt’s Lymphoma, a form of non-Hodgkin’s lymphoma that starts in the immune cells.
“It is every parent’s worst nightmare to learn their child has cancer,” Gwendolyn, Mark’s mother, shares. “There is a whirlwind of emotions you go through the strongest of which is the drive to battle this disease”.
Months later, in February 2016, Mark returned to school to complete the eighth grade with his classmates. Even after missing so many days in the classroom and enduring days spent at the hospital for treatment, Mark stayed the course.
He finished the year with all A’s and continued this feat during his ninth grade year -- earning all A’s for every marking period! Mark gives thanks to his teachers and tutors for the help they provided at the hospital while he was undergoing treatment.
Mark has always loved science and technology and his goal remains unchanged despite his cancer diagnosis and treatment: to attend the USAFA to study aeronautical engineering. He would like to fly F-35 Lightening II Planes as well as design future planes and spacecraft.
“I have loved planes and flying for as long as I can remember,” Mark says. “I took every toy plane and model apart to reengineer and streamline the design to see if I could get them to fly faster and further!”
Mark will be one step closer to his dream as he takes off this summer for NASA’s Space Camp in Huntsville, AL. Like most 15 year old teens, Mark is ready to step behind the wheel... his "wheel" just happens to be in the cockpit and he'll get that chance with NASA’s flight simulators.
Mark shows us that a cancer diagnosis does not mean the end of your dreams. His courageous determination to achieve his goals remains intact and we can tell that he's ready to launch into a bright future! It's also what has made him such a great inspiration as a 2016 ASK Kourageous Kid.
ASK kids Grace, Mason and Hugo are all smiles with online tutoring at the Fredericksburg Afterschool Program.
Trilogy Mentors is helping to make the grade
Missed school days and cognitive late effects from treatment mean that our ASK kids often need to work harder than their peers to keep up and are at risk of not moving to the next grade level with their peers. That’s why one of ASK’s key focus areas is education.
This spring, ASK launched a pilot program to address this need with area start-up Trilogy Mentors. Trilogy was founded by recent University of Richmond graduate, John Failla. His goal was to create an online tutoring program that would be accessible to all students, not just those with financial resources. He considers his tutors to be mentors because they are encouraged to develop supportive relationships with their students.
“Our purpose is to empower students when it matters most, turning their most challenging moments into breakthroughs. Our personalized online learning platform supports students of any background, wherever they are” says John.
The pilot program was developed to supplement the educational assistance that our patients and survivors are getting in ASK’s afterschool program. It is also a resource to help ASK kids in outlying communities that can’t reach one of our afterschool enrichment program sites on a regular basis. The results from the first six-week session are in and it was a resounding success.
Within the first 3 weeks, the pilot nearly doubled in size from the initial 6 students to 11 students. In addition to increasing student engagement for ASK, Trilogy was able to increase the parental engagement as well.
“The best thing about this program is, it caters to their individual levels and academic needs. It also give an opportunity for the kids on how to use long distance learning skills” says ASK parents Gaurang and Jigna Dave.
While academic improvement was the main focus, we have seen the students’ confidence and willingness to learn also increase which is why we're looking forward to continuing this partnership in the coming year. None of this would be possible though without our donors and sponsors who generously give to ensure all of our ASK kids have the educational support they need for thriving after cancer,
Summer Camp Love
Meet ASK kid Molly, one of our 2016 Kourageous Kids.
Molly has Beta Thalassemia Major, a blood disorder that reduces the production of hemoglobin. Hemoglobin is the iron-containing protein in red blood cells that carries oxygen to the cells throughout the body.
Molly is transfusion-dependent and will receive a blood transfusion every three weeks for the rest of her life. Since kids with serious blood disorders are treated in the ASK Pediatric Hematology/Oncology Clinic, they are also included in ASK’s programs.
That’s just one thing to know about Molly. What’s more important to know about her is that she’s a sweet, funny girl who likes dancing, music and dolls. She especially loves anything American Girl.
We first met Molly at last year's summer camp where she decorated cupcakes, played handbells, and enjoyed games with other kids from clinic. Her mom shares that Molly loves going to ASK’s summer enrichment camp and seeing her friends Sylvia and Josh.
Pictured above: Molly decorating cupcakes with Sylvia, camp helper.
ASK summer camp is a chance for so many of our kids in similar situations to have a place where everyone understands because everyone lives the experience... and, it's fun! Who doesn't love cupcakes??
Camp is also important for the parents. It's an opportunity for them to have a safe place for their child to go during the day. Since the financial burden for many of our families who have a child with ongoing health problems is often heavy, ASK’s camp is provided for free.
Donations are necessary though for paying for teachers, special activities and purchasing supplies. If you'd like to help us host our three weeks of summer camp for 2017, please consider making a donation using the link below.
We can't wait to see Molly's big smile at this year's camp! We'd love for you to stop by and see her smile, too. Email Britt Nelson to learn more and to set up a visit.