STORIES OF MAKING LIFE BETTER FOR KIDS WITH CANCER
Mid-year review of what we've accomplished together
As the calendar rolls over to 2018, we pause to reflect on the first half of our program year. We are so proud of all that we have accomplished in the last 6 months. ASK is able to touch people in our community, not only supporting families whose children are in active treatment for cancer, but we are also dedicated to taking a 360-degree view of how other lives are affected. ASK continues to create events, seminars and special programs that surround the childhood cancer community and lead the way in educating others through assistance, support and kindness.
Special Events for Kids
Kids just want to be kids and have some fun. Through ASK hosted programs like these, a child who is living with cancer, or a young adult who knows what it’s like to fight through childhood cancer, can meet and bond together in a relaxed environment.
- Holiday preschool party for First STEP
- Holiday parties at all three After School Enrichment locations
- Clinic staff lunch
- Clinic holiday party
- Young Adult Tacky Light Tour
- 50+ Adopt-a-Families
Special Events for Siblings & Parents
The family calendar can change dramatically when a child is diagnosed with cancer. Instead of running to basketball games and ballet, parents are now visiting with doctors and making trips for tests and treatments. ASK hosts programs for siblings and parents of kids with cancer to offer some fun, normalcy and bonding opportunities.
Education Based Support
This is just a glimpse of how ASK is reaching out to families in Central Virginia thanks to our community of support! Your gifts allows us to make these amazing opportunities possible for local families. Please consider committing your new year to helping ASK. Check out our “Ways to Give” section on our website for information on how you can get involved and how you can make a donation.
A Pediatric Cancer Diagnosis Changes Household Finances
Getting a cancer diagnosis for a child can be challenging enough. There are so many things going through a parent’s mind that the thought of dealing with finances is often last on the list.
At least half of all families with a child battling cancer will report severe financial hardship as a result of their child’s treatment. 49% of families surveyed reported taking on “considerable to severe” new debt as a result of their child’s treatment.*
In addition to health care costs, there are other hidden expenses that add up quickly:
However, there are resources available that can assist you if your expenses are starting to become challenging during treatment.
Robyn Dillon and Janice Graham are the social workers for the ASK Pediatric Hematology/Oncology Clinic at the Children’s Hospital of Richmond at VCU. They can be reached by calling 628-0422 or 828-9065 or emailing them at firstname.lastname@example.org or Janice.email@example.com.
ASK Childhood Cancer Foundation is proud to be the local resource for families in Central Virginia managing a child in cancer treatment and beyond. We are here to assist you. We may not have all of the answers, but our goal is to help you get the resources and assistance you need.
This article includes tips from a workshop that ASK recently offered to parents and caregivers. Each month, the workshop series will focus on a different issue facing our ASK families.
One ASK Family Gives Back to Other ASK Kids
This week, we will welcome 50 ASK families as they stop in and pick up some amazing, thoughtful and incredibly generous gifts that are bought with love by volunteers throughout RVA.
This would not be possible without the ASK Adopt-A-Family program which provides support for parents of children who are in treatment so that they can focus on things other than shopping, wrapping and the stress of having to make sure their loved ones are able to open something special on Christmas morning.
For the Heyer family, the ASK Adopt-A-Family program has become an annual tradition for helping out during the holiday season. Joyce Heyer has been coordinating and matching volunteers with ASK families in need during the holiday season for more than 18 years! Joyce has helped so many wishes come true for hundreds of kids and was inspired to get involved because she comes from an ASK family, too. Joyce's son William (Bill) Heyer was diagnosed in 1997 at the age of 15 with rhabdomyosarcoma.
"From day one, ASK was instrumental in helping me and my family through a very challenging time," shares Bill.
Each year, Bill now adopts several ASK families of his own with the help of his extended family. "I hope our gifts enable the children and families to escape, if even just for a moment," Bill said. "During my treatment, I escaped by playing video games, which also helped get me out of my parent's hair!"
So many ASK families have had their holidays feel a bit brighter thanks to the Adopt-A-Family program and to the Heyer family's dedication, which is why we consider Joyce, Bill and their family as one of our most treasured gifts!
ASK Survivor Jessica East Shares Her Special Wedding Story
I was diagnosed in August 1997 with Stage 4 Wilm’s Tumor at the age of 5. I had to have a left nephrectomy, radiation and chemotherapy. ASK has always been what has held my family together; during and after my treatment.
Alma Morgan (ASK's Educational Consultant) has been the most constant person. She has been with my family every step of the way. I met Tom David when he became our ASK Chaplain. I instantly connected with his warmth.
Leslie Wright (ASK volunteer and former program coordinator) is the one who got me back into being an ASK kid after retreating from the group for a long time. It was difficult for me for a few years to want to be friends with any other survivors or patients as I had seen to many people have their cancer come back and pass away. Leslie was the one who pulled me back and I will always be grateful for it.
The three of them combined have been so supportive of me as I went through college, got my Master’s Degree, and started teaching. All while dating my now husband. They always asked how he was and made sure we were both doing well.
When Jamie proposed to me, I knew I wanted Tom David to officiate. He knew me better than my church pastor and obviously anyone from the courthouse would! I felt like my wedding day wouldn’t be complete if I did have Alma there, since she had seen me through the toughest part of my life; even if it did shape me into the person I am today. Leslie also needed to be there. She cares so much about people that aren’t even her own children and cared enough about me to always check up on me.
Leslie and Alma have also been checking up on me since my husband is currently deployed for the Navy. I am coming up on 20 years cancer free this coming May and I know that Alma, Leslie, and Tom David will support me for many more!
Congratulations to Jessica & Jamie and warmest wishes for a lifetime of happiness!
Hosting Events, Volunteering and So Much More
Isaac and Andrea Wright got involved with ASK Childhood Cancer Foundation through close friends, Scott and Leslie Armstrong, who received support from ASK during the treatment of their son, Tucker.
“ASK does a great job with their summer camp, after school enrichment, and being present for families that are affected by childhood cancer. The clinic and its staff are equally amazing,” shares Andrea.
For the past seven years, Isaac and Andrea and their son, Jackson, have collected snack and toy donations, brought in lunch during summer camp, laced up their sneakers for the ASK 5K and have sponsored ASK’s Above & Beyond Gala through their company Financial Dynamics & Associates. The FDA staff have also shown their support through toy donation drives.
And, most recently, the Wrights held their 2nd Annual Fawls Golf Invitational at their home as a way to introduce friends and neighbors to ASK’s mission… while having a little competitive fun on the putting greens.
What wasn’t so little was the generosity of their friends who helped to raise over $5,000 in support of ASK’s annual holiday party, which was held earlier this month with over 103 ASK families in attendance. It’s hard for parents to keep up with holiday traditions while taking care of a child in treatment but thanks to the Wrights and their friends, ASK was able to provide a party filled with presents, games, dancing and a visit from the big guy himself, Santa.
The Wrights say that “we would tell anyone thinking about getting involved to just do it, make the time and get to know the organization. It will touch your heart and enrich your life by being around these children.”
Growing up should be fun. Kids should be thinking about holiday parties and playing and being carefree – not doctor’s appointments or chemo.
Andrea & Isaac, thank you for all that you do to help our kids be kids!
Jonathan Enjoys a Fresh New Space
There is much to be thankful for this holiday season for one of our ASK families. ASK Kourageous Kid, Jonathan received a Dream Room Makeover on November 15, just in time for this busy season.
Thanks to Breese Romano with Cobblestone and Home Building Association of Richmond for helping ASK make wonderful things happen for kids with cancer in Richmond.
Thanks also goes out to our great friends at R Home Magazine for the great coverage of this fun surprise.
Jonathan we hope you enjoy every bit of your new space!
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.