Meet Zoey, an 8-year-old ganglioneuroma survivor!

Zoey’s tumor was found quite by accident. Initially, she had gone to the doctor for a bad cough which led to an x-ray. Zoey was misdiagnosed with pneumonia and after two weeks, her doctor took another look. At that point, the tumor was found and Zoey spent 9 days in the hospital. Surgery took 8 hours to complete and doctors removed 80% of the tumor. The remaining 20% was left in her spine and too close for removal. 

“When Zoey was diagnosed, it was a complete shock as she was a healthy 3-year-old” remembers Susan, Zoey’s mom.

Zoey’s tumor is located in her spine and was too close for removal so the team tried two rounds of chemotherapy first. After the tumor didn’t respond, the team continued to keep an eye on it through scans every six months. During her treatment, she encountered many doctors who were quick to start one treatment rather than taking time to assess all avenues of treatment. Her parents decided to take her to specialty doctors instead. 

“She handled everything with a smile and took to learning about her cancer and treatment. She has become knowledgeable about what she’s going through and loves to play doctor with her medical play kit she received from ACCO.” 

ACCO spoke to Zoey’s mother, Susan in late April 2024 who provided us with this update: “Zoey’s treatment is going good. She had surgery and chemo back in 2020 and now we monitor it. 20% is left but it is in her spine so they are not touching that. We see a neurologist every 6 months and she has tests ran. So far, so good. Her tumor does press on her spinal cord and the free flowing fluid but you would not know it.  She is a happy, adventure-seeking 8-year-old how loves participating in gymnastics, trampoline and swimming.” 

Meet Justin, a stage 3 acute lymphoblastic leukemia hero.

One week before Justin’s 12th birthday, Justin was diagnosed with cancer. He had complained of chest pains and was taken to urgent care. After a chest x-ray was performed, the family was told to go to Stanford Children’s Hospital for additional testing. 

He relapsed in 2017 but still continued with his chemotherapy treatments. A bone marrow transplant was no longer available. The last few months of Justin’s life were ‘extremely challenging’ because of long-term side effects. He suffered with mobility issues and loss of kidney function. 

His mother fondly remembers Justin by saying, “warriors are not born; they are forged through adversity and hardship. Justin’s name means ‘righteous, just, fair. Since the day he was diagnosed, he lived up to his name. He was loved by all he came in contact with. He was the life of any party and loved basketball. 

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

Meet Hailey, a diffuse intrinsic pontine glioma hero.

When Hailey began experiencing headaches and loss of bodily control, her parents were quick to take notice. Initially, doctors suspected drug involvement but soon discovered she was battling DIPG. Tragically, Hailey succumbed to DIPG shortly thereafter.

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

#childhoodcancer #childhoodcancerawareness   

Meet Trey, an Atypical Teratoid Rhabdoid Tumor (ATRT) survivor!

“Trey attended his first day of soccer practice at daycare and came home with no appetite. He was completely exhausted. The look in his eyes is one I’ll never forget, it was like he wasn’t there. We were in complete denial” remembers Trey’s mother, Ebony. 

At two and a half years old, Trey walked into the emergency room able to recite his colors, ABC’s, and body parts. He was potty trained and did all of this with a tumor that covered the majority of his head. On March 7, 2023, Trey was rushed into emergency surgery to resect his brain tumor of which his surgeon had never seen in his 20 years of practice. Trey endured two brain resection surgeries, a stroke, seizure, chemotherapy, platelet and blood transfusions, stem cell treatments and proton radiation. He spent almost nine months inpatient. 

As of April 2024, Trey’s six-month post-treatment MRI showed no evidence of disease (NED) on his brain and spine! 

Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®

Learn more about brain cancer here. 

This article originally appeared on VRforHealth.com Website.

VRforHealth has been supporting the great work of 18Loop and ACCO since April 2022. On this second anniversary of their partnership, Denise Silber interviewed both Greg Tarnacki (18Loop) and Ruth Hoffman (ACCO).

VRforHealth: Greg, How did you become interested  in applying virtual reality to help children suffering from illnesses and subsequently contact ACCO ?
Greg: I started 18Loop after a 20 year career in technology sales and a year stint in Americorps. I was a VISTA, or Volunteer In Service To America. My Americorps service fueled my interest in the nonprofit world, and I was intent on entering that world by delivering technological impact. 18Loop was formed in 2017 and focused on cancer because of a personal experience that I had with the young cousin of a friend suffering from the disease. We originally decided to base our intervention on robotics, but eventually found that VR was more immediately impactful. I called the ACCO as a cold call because all signs pointed to their organization taking a lead role in fighting for a cure for pediatric cancer in the US. We initially tried cheaper and more basic Google Cardboard style VR, but once Oculus introduced their GO HMD, we realized that we had to work to deliver the best solution to Ruth’s kids. We now have over 100 headsets in total and most of those are with the ACCO.

VRforHealth: Ruth, how did you first react when Greg contacted you about his project? How does 18Loop fit with the mission of ACCO and how does the partnership work?
Ruth: 18 Loop’s VR program fits beautifully into ACCO’s resources that we provide to children. Kids undergoing cancer treatment receive harsh therapies that can include toxic chemotherapy, surgery, and radiation. Teens face unique challenges in that they are often isolated from their friends and school community during a time in their lives when they would normally be expanding their social reach. Additionally, one in five teens will learn that they will not be cured of their cancer, and must face death with an increased cognitive understanding as a result of their age. When Greg first introduced the VR program, I had known many teens who had died from cancer and had witnessed their emotional and physical pain. Helping these kids to not feel as isolated, and assisting them with pain management through the VR headset was a gift to these incredible teens as they faced death.

VRforHealth: Greg, you have mentioned that VR supports children in 5 ways: mood, pain control, collaboration, education, exercise.  Can you say more?
Greg: 18Loop has discovered that our VR intervention benefits our kids in the five ways that you mention. We deploy Tripp to our kids which is designed in terms of neuroscience to benefit mood. It also delivers an ancillary benefit in terms of pain management. Tripp’s CEO has gifted lifetime environments to our current batch of kids and their team has been very supportive of our joint mission. Seven years ago, I witnessed a port access procedure done with bulky and expensive legacy VR. That study illustrated how immersion can effectively distract patients from pain and discomfort. We now can replicate that immersive distraction every day at a fraction of the cost with Quest 2. That’s the magic of technological progress. There is some correlation to Moore’s Law in terms of the exponential increase in processing power. VR exercise is a great benefit as well, as it keeps our cancer patients moving in the hospital at home. Physicians find that exercise is vital and we concur based on the feedback that we have received. We are examining collaboration tools currently and have explored formal partnerships for immersive learning. Our families have been pointed to a few options for each, but stay tuned for more structure from us on collaboration and learning.

VRforHealth: Ruth, How does ACCO  present the opportunity of using VR to the families of the unwell children?  And did you have to set up any special logistical process to deliver the headsets?
Ruth: ACCO receives requests every day for our resources, which are provided without charge to all children with cancer and their families across the country. We identify potential kids who are age appropriate, who are on active cancer treatment, and who would most benefit from the VR headset program, based upon diagnosis, and prognosis. Once a month, ACCO filters resource requests to find kids eligible for the 18Loop Headset. From there, our staff reaches out to the kids’ families individually to let them know about the opportunity and to see if they would be interested in getting involved. Once the headset requests come through, our staff member Blair determines if they are legitimate requests and adds them to a spreadsheet. She lets our resource coordinator know that there have been new kids added and he processes the headset. Headsets are sent out along with shirts as soon as they become available.

VRforHealth: Greg, Tell us more about how the families use the headsets while the child is ill and even after?
We have seen families use the headset as a group for all of the same reasons that the kids do alone. 18Loop has stories of brothers and sisters benefiting from the technology because they are stressed from the disruption that illness causes in their families. We also see certain cases where our kids lose their fight to cancer and have evidence that Tripp and other VR apps help with grieving and bereavement. You can go to our website for statistical data, which we have gathered from our ACCO families. Pictures tell part of the story, but feedback from parents and oncologists point to a high degree of success for the program. Health and wellness VR is no longer a novelty, but sometimes the benefit gets lost in the description of the technology itself. The next frontier is standards development, hardware commoditization and more pervasive regulatory approval for xR wellness apps. It’s cool that Apple has jumped in as well.

VRforHealth: Ruth and Greg, This is such a worthy cause. We are so impressed. What are your current needs? I know you are regularly applying for grants. Can you tell us about that?
Ruth:  As you mentioned, financial support is always a huge need. We need people with big hearts who are willing to support these incredible kids by raising funds or donating to support our programs.

Greg: 18Loop is relaunching in April and we’d love to drive traffic to our site in order to scale individual donations. We plan to offer options to purchase individual HMDs on behalf of an ACCO child and we are raffling off a Quest 3 to raise funds for our program. We expect additional funding this Spring, but there is never enough capital for our headset demand. We’ll keep working to meet the need.

VRforHealth: And to conclude with an opening – what are you hoping for from the partnership with VRforHealth? Why us?
We hope to continue the work we’ve done with you. I hope we can expand the level of cooperation in order to drive headset revenue and support your business collaboratively. It’s always pleasure to partner with VR for Health.

Denise Silber: Thank you Greg and Ruth for the time, for your kind words, and for the great work you do!

For more information about 18Loop and ACCO, check out these links.