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 Maddi, an astrocytoma warrior. 
For one year, Maddi suffered from chronic headaches that were lessened with allergy medications. Maddi delayed her speech until she was well over two years old. She began complaining of headaches at three years old and at four, when she began Pre-K, her headaches became more frequent and intense. Doctors suspected her headaches were because of poor eyesight so a strong prescription was given to her parents. At five years old, Maddi was in kindergarten and complaining of excruciating headaches.
The cause of Maddi’s migraines was pilocytic astrocytoma hydrocephalus. She was put on chemotherapy immediately and despite 19 months of treatment, Maddi’s tumors did not respond. She was accepted into a study that would help shrink the tumor by 37%.
As a side effect of her treatments, Maddi has gained weight at a rapid pace which caused severe obstructive sleep apnea with oxygen needed. When this happened, Maddi received an emergency tonsillectomy and adenoidal surgery to correct the obstructions and now she is oxygen-free.
As of April 2024, Maddi’s tumor has shrunk and she is enjoying being a kid. She enjoys swimming and making new friends.
Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®
Meet Madeline, a forever 14-year-old DIPG hero. 
When morning vomiting, loss of balance and double vision were affecting Madeline’s daily life, her parents took notice. She was able to get an appointment with a neurologist and after ten minutes, the doctor told her parents that she needed to be taken in for an MRI immediately. After six hours in the emergency room, the devastating results were shared, a Diffuse Intrinsic Pontine Glioma (DIPG) diagnosis. Madeline was then rushed to Children’s National Hospital for further evaluation.
Madeline went through two rounds of radiation treatment and two separate clinical trials including several high-dose dexamethasone treatments.
The following excerpt was taken from Madeline’s obituary. “Even though the last 13 months of Madeline’s life were very difficult, her bright light never died, and she stayed positive throughout her journey. After her November 2021 DIPG diagnosis, she underwent brain surgery for a tumor biopsy, received two separate rounds of radiation, and participated in two clinical trials. Ultimately, these efforts were unsuccessful in saving her precious life, and her neurological symptoms worsened shortly before Thanksgiving.
Despite gradually losing the ability to walk, talk, and write, Madeline remained hopeful and faithful and continued to do many of the things she loved. She was an avid baker of cookies and banana bread, and she was also an excellent artist. In fact, she continued to draw, knit scarves and bags, and make beaded necklaces and bracelets until her hands no longer worked. Madeline loved playing cello, but unfortunately, she could not do that when she started the 2022-2023 school year. However, she began high school via homebound, receiving instruction remotely through Zoom, and she maintained straight A’s.”
Learn more about DIPG by clicking here.
Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®
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.
Meet Aaron, a stage 3 rhabdomyosarcoma hero. 
Aaron started experiencing left ear pain and droopiness on the left side of his face and eye and his parents took notice. His father, Jean-Paul said that Aaron was taken to an ENT who placed a tube in his right ear. They biopsied the mass in his left ear and was then sent to OKC Children’s Hospital where he was diagnosed with rhabdomyosarcoma.
“Fear, shock and sadness – The day was January 28th, the day we as parents received the news no parent ever wants to hear; my four year old son Aaron was diagnosed with stage 3 rhabdomyosarcoma along with a blood clot near his brain.”
“From there, it was five months of chemotherapy on top of proton radiation treatments. By mid-May, Aaron was able to ring the bell, which was a sign that he was done with radiation treatments. Little did we know, he would have a seizure on a Monday and be gone by Friday.”
During Aaron’s life, he was able to travel to Rhineland Falls to see the Frankenstein Castle. He was the youngest of three boys and loved playing Angry Birds.
Learn more about rhabdomyosarcoma here.
Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®: https://www.acco.org/donate/
Meet Kim, mother of Jared, a childhood cancer hero. Today, we ran a condensed version of this story on our social media but intended to publish the comprehensive first-hand story here, on our blog. 
Q. Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
R. Not really. I saw the commercials on TV so I knew childhood cancer existed but I never had any connection to anybody that it directly affected. 
Q. Tell us about the day your child was diagnosed. What events/issues led to your child’s diagnosis? How did you feel/react to the initial news?
R. On July 31, 2017 I took my 15 year old son Jared to the doctor for a lump in his neck. He also had red spots on his legs and had a bloody nose that was hard to stop bleeding. He had been feeling well and I thought he had possible allergy issues. They drew blood and I’ll never forget the look on the doctor’s face when she came in. She had been speaking to the head of the ER at UK Hospital. Jared’s white blood count was sky high, His platelets were rock bottom. She said we think Jared has cancer. Nothing can prepare you to hear those words. We were told not to even check out at the front desk but to go as fast as we could to the Emergency Room where they were waiting for us. Calling my husband to tell him was so hard. On that ride to the hospital with Jared I tried to keep it together but was falling apart inside. I know he was scared but was being so strong. We were quickly taken back in the ER and admitted directly to the PICU unit of Kentucky Children’s Hospital. He was diagnosed with T-Cell ALL Leukemia the next day and would spend almost 3 weeks at the hospital. Our life was turned upside down so quickly and life has never been the same again. You want your “old” life back but it will never come back. You see how much you had taken for granted and how much you enjoyed such simple things. I knew we all had to be strong and positive for Jared and that is what we tried to do every single day. I never wanted him to feel like he should just give up fighting. Fighting cancer is hard and he needed to do the best he could every day to beat cancer. It’s hard not to wonder why this happened to your child. What did we do wrong? What could we have done to stop this? Leukemia is not something we could have prevented even though we don’t know why this happens to so many kids. We did the best we could to adjust our life to take care of Jared, try to continue working and take care of our other children. It’s extremely overwhelming but I know we did the best we could and Jared knew every single day how much he was loved. 
Q. Did your child follow a COG protocol for treatment or did they follow a different protocol tailored to their situation? Thoughts on their overall treatment experience? How did you feel watching your child go through treatment?
R. He did follow a COG protocol. Hearing that treatment for leukemia was 3 1/2 years was overwhelming. I am a planner and like to know what is coming. That’s so hard with leukemia even though I did know all the upcoming stages of treatment. Kids react so differently to treatment and Jared had multiple side effects from chemo/steroids. We watched kids in the clinic play like nothing was wrong with them but Jared had adult doses of chemo and treatment was not so kind to him. He lost 38 pounds in the first month along with his hair. In the second month he lost his ability to walk. Jared is a twin so it was very hard watching him see his twin have a normal life and be able to do all the things he should be. Instead his life was all about clinic visits and hospital admissions along with dealing daily with the harsh side effects of treatment. We kept counting down to the time that the worst treatment should be over in March 2018. As a Mom you want to stop the pain for your kids. Watching him struggle was so hard for me. He often just wanted me to sit by him even if we didn’t talk. In the hospital he wanted to feel my touch even though he was 15. While I will always wish I had done more I know that Jared felt loved by his family and was a fighter until the end.
Q. Share with us obstacles and triumphs that you faced personally during your child’s cancer journey. How did it feel to be thrown into the childhood cancer arena? We hear so many talk about joys and sorrows, triumphs and obstacles they faced throughout their journey – please share any of yours or your child’s. Overall – how did your child’s journey shape yours and your families new normal?
R. No parent ever thinks they will hear the cancer word. I had no idea this world existed. I thought cancer was typically a quicker treatment time with nausea, throwing up and being tired. It’s so much more than that. Life changed so much when caring for a child with cancer. It was difficult to continue to work, try to keep up our home and take care of other kids. Luckily I was able to work from home and be there to care for Jared. I wasn’t prepared for so many clinic visits and hospital visits. We never dreamed Jared wouldn’t be able to walk on his own. The steroids did so much to him and the chemo didn’t help either. The hospital admissions were tough mentally as well as physically. Jared just wanted to be a normal kid but that was so hard with cancer. We had to adapt our home to a walker and wheelchair. The simple task of getting him around the inside of our house and to the car wasn’t easy. Falling was a huge risk for him. I’ll never forget his first fall and the look of terror on his face. Physical therapy helped him a lot but he was never able to walk unassisted again. Watching him be unable to gain weight was hard. He knew he needed to eat and couldn’t. Fighting cancer is so much more than I ever dreamed. Despite all of this we have been blessed to meet some amazing people that we wouldn’t have in our lives otherwise. To this day I still talk to our social worker, his doctors/nurses and so many other cancer families. We were supported by our community in so may ways that helped make this journey a little bit easier. We were overwhelmed at the support we received from so many that didn’t know our family. For that we were forever grateful.
Q. What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?
R. Jared passed away on March 22, 2018. We were in the last intense phase of treatment (Delayed Intensification) and just had one chemo treatment left when things went wrong. What should have been an admission for low counts and finishing up the last intense chemo turned into C-diff, an extremely rare bacterial infection and even more rare fungal infection called Mucor. The fungal infection spread to his brain and many of his organs and nothing else could be done. Things happened so quickly and in less than 24 hours Jared would be unresponsive and never be awake again. We experienced things in that last admission that nobody ever should. We never expected to lose Jared. Life without him will never be the same. Jared was the sweetest and most giving kid ever. He worried more about his family than he did himself. Now I volunteer for Jarrett’s Joy Cart at KCH hospital and participate on a Family Advisory council as well to help make the hospital experience better for children and their families. We have helped raise donations for the Joy Cart for the last 3 years and will continue doing so. Jared would love seeing that so many kids that were in the hospital are getting smiles put on their faces by the work we are helping to do.
This Social Media Takeover ran on ACCO’s social media on April 24-25, 2024. If you’re interested in submitting your own Social Media Takeover, click 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.
Meet Declan, a neuroblastoma hero. 
Just after Declan’s third birthday, his mother, Victoria, noticed bruising on his belly. She took him to the emergency room and had a gut feeling that something was wrong.
Declan was diagnosed with neuroblastoma and underwent many surgeries. According to his mother, “they tried everything, but there was no hope.”
Sadly, after three years of relentless struggle, Declan was taken too soon.
Learn more about rhabdomyosarcoma here.
Together, we can make a difference. Donate today, because kids can’t fight cancer alone!®: https://www.acco.org/donate/
#childhoodcancer #childhoodcancerawareness
This excerpt is from an article appearing on The Gazette entitled, “Cancer in Iowa: Here’s how Iowans are battling the state’s dire cancer rates,” written by Brittney J. Miller.
Scott Kaas holds his daughter Devyn, age 15 months, while they await blood test results during an appointment at the University of Iowa’s Stead Family Children’s Hospital in Iowa City on March 1. Scott spent 20 years working with the American Childhood Cancer Organization’s “What About Kids?” research initiative before his daughter was diagnosed with an aggressive form of blood and bone marrow cancer last year. (Nick Rohlman/The Gazette)
Scott Kaas, 52, has been involved with the American Childhood Cancer Organization’s “What About Kids?” research initiative for two decades. He has talked with legislators around Iowa — including Gov. Kim Reynolds — trying to push for more funding for pediatric cancer research.
His life changed when his daughter Devyn was diagnosed with acute myeloid leukemia at 7 months old last year. After five rounds of chemotherapy, she gets to live at home again. Her appetite has returned. Her hair is finally starting to grow. And, last month, her family received good news: She’s in remission.
Scott’s work, though, hasn’t stopped. As Iowa coordinator for the “What About Kids?” initiative, he sends emails to Iowa legislators every day, urging consideration of policies that support cancer prevention and research. He has even invited state officials to the University of Iowa Stead Family Children’s Hospital — where his daughter was treated — for a tour.
Brooke Kaas holds her 14-month-old daughter Devyn at the Kaas’ home in Cedar Rapids on Feb. 14. Devyn, now 15 months old, is in remission after months of treatment for acute myeloid leukemia, an aggressive cancer of the blood and bone marrow. (Nick Rohlman/The Gazette)
But many of the cancer-related bills he was pushing for didn’t even survive this legislative session’s first funnel deadline. “Your request is on the list of the millions of dollars that have been requested by numerous groups,” Rep. Joel Fry, R-Osceola, chair of the Iowa House’s Health and Human Services Appropriations Subcommittee, wrote in an email response to Scott Kaas advocating for more funding for pediatric cancer research.
The lack of urgency is frustrating, Kaas said. “It might take three years to find a cure for one type of cancer, or a drug that helps change a treatment plan,” he said. “The more time they take dragging their feet to pass these bills… We could lose some kids. It’s tough.”
With an opponent as invasive and alarming as cancer, it’s easy to feel powerless. But people like Kaas and Streit have found their weapons — and their voices — through advocacy.
Devyn Kaas crawls across the floor at the Kaas’ home in Cedar Rapids on Feb. 14. Last year, when she was 7 months old, Devyn was diagnosed with acute myeloid leukemia, an aggressive cancer of the blood and bone marrow. Last month her family learned Devyn is in remission. (Nick Rohlman/The Gazette)
Advocacy starts with education: Learn more about cancer risks and prevention efforts, sources told The Gazette, and have conversations with your loved ones about it. Anyone can contact their local legislators to express their support for or opposition to an issue, and registered voters can vote for legislators who best represent their values and priorities.
Anyone can be a cancer advocate, said the Cancer Support Community, a global nonprofit with 190 locations that deliver free support and navigation services to patients and families.
“Devyn will be a voter one day,” Kaas said. “It matters that our state government cares about (cancer) and does something about it — not just for us, but to prevent it for themselves and their family.”
Meet Axel, a 4-year-old stage 4 alveolar rhabdomyosarcoma warrior.
According to his grandmother, Cindy, Axel’s diagnosis came shortly after his parents found a lump in his groin. The doctors ran bloodwork and talked to an oncologist almost immediately. At that time, they thought it was just an infected lymph node, and was put on antibiotics. When the medication didn’t work, they noticed another bump on his knee. At this point, he was taken to Phoenix Children’s Hospital and stayed for a week. After days of testing, biopsies, and a port placement, he was given the official diagnosis: stage 4 alveolar rhabdomyosarcoma warrior.
“He has endured so much and continues to smile. He doesn’t complain” said Cindy.
Chemotherapy began immediately and currently, Axel is in the maintenance phase of his treatment plan.
During treatment, Axel has struggled with isolation and often misses his older brother and friends since he cannot go to school or have playdates. His grandmother noted that he takes it like a champ and puts a smile on everyone’s face.
Learn more about sarcomas here.
