ASK kid Caleb was diagnosed Stage IV High-Risk Neuroblastoma in February 2017 at the age of 3. Last April, Caleb was in the hospital and was just starting his 14-month long treatment journey. He and his family were unable to attend the annual ASK 5K & Fun Walk which brings together ASK's kids and families for a day of celebration and remembrance. This year was different. Read on for Team Caleb's story as shared by ASK mom Kimberly.
From Chaplain Tom David’s first visit during our scary first hospitalization (who by the way has spent time with us every single hospitalization including some clinic visits) to Katie’s first visit to Caleb during his first clinic visit, always providing the red DVD player and the DVD collection to Caleb--and ALL of the support we have received from ASK over the past year from encouraging notes in the mail and gift cards to fun events for the kids – we were welcomed into this family with open arms! And as most of you know, when you are thrust into such a scary new world that is childhood cancer, having this kind of support is crucial.
We weren’t sure if we should go the standard treatment route or head to Sloan, CHoP or somewhere else. We traveled for other opinions. We ultimately decided to complete treatment here at home at VCU. Caleb ended up having a successful surgery on June 7, 2017 and went on to spend most of his summer in the hospital enduring two stem cell transplants, 12 radiation treatments in the fall and then six rounds of immunotherapy in the hospital throughout the winter. And on April 17, 2018 he took his last treatment dose.
Caleb will start a clinical trial in a few weeks to help keep him in remission but it will be a breeze compared to everything else he has been through. We have had a tough year, but we have been able to see the blessings more than anything else.
We now have a cancer family! We have supported each other, even if just by following each other’s journeys, in prayer or in passing in the halls of the hospital. Some kids are doing well and Caleb’s health has been restored, but still others we’ve lost. Some we followed their pages. Some we just met their parents. Each passing we felt deeply. It was personal. Many of these kids have walked this walk before.
This is not fair and this fact keeps us from celebrating too wildly. There is just too much heartache that we feel for these parents. And really, there is always that nagging fear deep inside that Caleb’s cancer might return. We watch him play in the backyard, up to his ears in mud wearing his fireman rain boots pushing his dump trucks around. We see him dancing in the living room. Antagonizing the pets. Driving his sisters crazy. But it’s what we don’t see that tends to overshadow our joy. Fear creeps in as we wonder what could be brewing just beneath the surface. It’s never ending. This is our life now, but we can’t sit in fear. We must keep moving forward.
This month’s staff spotlight is on our chaplain, Tom David Siebert. ASK mom Venus perfectly expresses why Tom David is an invaluable member of the pediatric hem/onc psychosocial team at Children's Hospital of Richmond at VCU.
When I think of some of the difficult moments during our journey, I am reminded of the blessing of Father Tom David. Father Tom David is incredibly soft spoken, but equipped with a strength and calming presence that spoken or unspoken is reassuring.
I vividly remember the day I had to sit through another bone marrow biopsy anxiously waiting for the team to arrive to perform the procedure. I expressed to Father Tom David how much I didn’t want to be there and I remember him finding a chair to pull into the room to sit there with me shielded behind the curtain, sharing a word of encouragement and a quick prayer that helped to still my heart and thoughts.
Mireya was quite young during most of her active treatment, but she fondly remembers visits with Father Tom David. I along with many families are thankful for the importance of his call and his role on the ASK team. It was and continues to be a joy to see him (and his collection of bowties) visiting with families and children.
Sophia Bonner-Armstrong is a typical fifth grader. She likes to read Harry Potter books and Shel Silverstein poems. She’s an avid crafter who fires up her glue gun regularly. She loves fashion and music and making her own videos with the popular social media app Musically. She’s a fan of “Stranger Things” and Steph Curry — she loves Steph Curry.
What’s not so typical is that since July 20, 2016 when she was diagnosed with Langerhans cell histiocytosis (LCH), Sophia has been in treatment for this rare type of cancer.
Sophia’s symptoms started with a swollen eye. Doctors thought she had cellulitis and at first, the swelling responded to antibiotics. But when the swelling returned and persisted, further investigation revealed a tumor located behind her eye. And attached to her brain’s outer membrane.
Less than two weeks later, after surgery to remove the tumor, Sophia started a 13-week regimen of weekly chemotherapy treatments, high-dose steroids and antibiotics., then chemo every three weeks for a year.
After the first five rounds of chemotherapy Sophia entered Pemberton Elementary for her first day of fourth grade.
“Some of the kids she went to school with didn’t even know she had cancer,” her mom, Debbie, says. “They found out at the end of the year at an awards assembly. I don’t think she knew how strong she was. She really is tough.” Sophia missed only a handful of school days and finished the year with all As and one B.
Deborah credits Alma Morgan, ASK’s educational consultant, for setting Sophia up for academic success. “Alma didn’t play,” Deborah says. “She got her plan together with Pemberton very quickly so they had a good understanding of what Sophia’s needs would be. Alma gave them everything they needed to know.”
Sophia began attending ASK’s after-school tutoring program which also helped her keep up with the fast-moving fourth-grade curriculum. Not only does tutoring help her academically, but through these weekly sessions, and through other ASK activities, Sophia has made friends who are also dealing with the challenges of childhood cancer.
“Sometimes it makes me see that I am not doing that bad,” she says. “I can relate to the other kids.”
Deborah also credits child life specialist Katie Barber with making the experience of cancer treatment just a little bit easier. “Katie was the first person with ASK that we met and she was such a blessing,” she says. When Sophia was scared about having a port installed, Katie introduced her to another child her age at clinic who showed her his port and told her it was no big deal.
“It eased her mind,” Deborah says. “From pretty early on, ASK was there for us. … It’s how we met some of our support people. I had never heard of ASK before, but now I tell as many people I can about it.”
Though the journey through cancer treatment is arduous, ASK provided some bright spots. Sophia is proud to be featured as a Kourageous Kid. Last year, she and he mother participated in the ASK 5K and Fun Walk, and will do so again this year. She’s also looking forward to attending camp this summer.
And Sophia even got to meet Steph Curry. The video of Sophia embracing him, in tears, on center court, went viral last year, and was shared by the NBA.
“Cancer puts things in perspective,” Deborah says. “It makes you decide what’s important.”
While ASK’s mission is to make life better for kids with cancer in Central Virginia, we recently had an opportunity expand our reach and help pediatric cancer patients and survivors from across the state.
Working together with the Virginia Childhood Cancer Work Group, ASK helped organize Virginia Childhood Cancer Awareness Day at the General Assembly on February 15th. In addition to ASK, the VCCWG includes representatives from major pediatric cancer treatment centers from around the state – Children’s Hospital of Richmond at VCU, Carilion Children’s at Carilion’s Clinic, Children’s Hospital of the King’s Daughters and University of Virginia Children’s Hospital.
Our awareness day started bright and early with a kick-off breakfast at the Children’s Hospital of Richmond at VCU where advocates received their key messages and meeting assignments. Our eighty advocates then walked across Capitol Square to the General Assembly where they spent a busy morning meeting with legislators and their staff. Our focus this year was to make sure that folks learned about how many young Virginians get cancer each year, the challenges that they face and the lack of state resources to support them.
“The awareness day was such a great opportunity to educate our state’s leaders. The delegates I spoke with seemed surprised at the lack of support, and hopefully our efforts planted a seed for change” said Jeff Hennessey, ASK dad and advocate.
It was inspiring to see parents, patients, survivors, doctors, social workers and other community advocates from around the state all come together for a common cause. We hope that this will be a first step toward raising the level of care for all pediatric cancer patients and survivors in Virginia.
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!