Social Media Takeover: Jared

Posted on April 24, 2024 by American Childhood Cancer Organization

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.

Supporting the 18Loop & ACCO partnership to improve the lives of children with cancer and their families

Posted on April 11, 2024 by American Childhood Cancer Organization

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.

Gold Ribbon Hero: Declan M.

Posted on April 7, 2024 by American Childhood Cancer Organization

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

Taking action with advocacy: Cancer in Iowa: Here’s how Iowans are battling the state’s dire cancer rates

Posted on April 1, 2024 by American Childhood Cancer Organization

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.”

Gold Ribbon Hero: Axel

Posted on March 24, 2024 by American Childhood Cancer Organization

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.

Gold Ribbon Hero: Athena

Posted on March 17, 2024 by American Childhood Cancer Organization

Meet Athena, a 19-year-old Hodgkin’s Lymphoma warrior.

In the spring of Athena’s senior year in high school, she developed a low-grade fever for a week. Thinking nothing of it, her mother took her to the doctor and they did blood work. Doctors noticed that her pulse was a little off, so they sent her for an x-ray. “The first time cancer was mentioned, I was at her high school picking her up. The doctor said she needed another scan,” said Athena’s mother, Tina.

“They called while I was in the school office and they suspected Hodgkin’s Lymphoma. I immediately fell to the floor. My brain couldn’t process what they were telling me.”

At that moment, everything changed.

Athena’s initial diagnosis was stage 2B Hodgkin’s Lymphoma. “Everyone said, it was the ‘best’ cancer you could get if you were going to get cancer. Let me just say, that is a terrible thing to say.” Treatment started immediately and consisted of four rounds of chemotherapy. Athena underwent weeks in the hospital, the loss of her hair, multiple scans and long hours in the clinic. At that point, Athena was in remission. In November of 2023, she went in for a follow up x-ray where doctors saw something on her lung. Three more scans followed and doctors suspected a relapse had occurred.

“We had barely had a chance to breathe before this “best” cancer was back. Now it is considered very aggressive.” Since the cancer relapse, Athena will need fertility treatments, immunotherapy, a stem cell transplant and 30 days of consecutive radiation. “What was supposed to be a quick few months of treatment is now at least two years with the possibility of radiation causing other cancers or it [the treatment] not even working to begin with.”

Athena is actively undergoing treatment for her relapse and has taken part in ACCO’s 18Loop VR study. She uses VR and gaming to help during difficult treatments. She is also an incredibly talented artist and gets pleasure from the simplest things like finding a rock or getting a new stuffed animal.

Please help ACCO send well wishes to Athena and her family during this time.

Learn more about Hodgkin’s Lymphoma by clicking here.

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

Gold Ribbon Hero: Jackson

Posted on March 10, 2024 by American Childhood Cancer Organization

Meet Jackson, a 4-year-old acute lymphoblastic leukemia (ALL) warrior and 2024 ACCO Ambassador.

Jackson was just three years old when he received the diagnosis of ALL. It all started in September of 2023 when he had persistent fevers, pale skin and low energy. His mother, Meaghan, remembers that “he hardly wanted to play with his twin brother, Henry, so we knew something was wrong.” Jackson was tested one month before diagnosis and doctors said it was a virus. There was no evidence of leukemia at this point.

“Although the diagnosis explained why he wasn’t feeling well, there are no words to describe hearing that your child has cancer; our world was shattered. We were completely devastated to learn Jackson had leukemia. Our world changed forever,” said Meaghan.

The day of diagnosis brought tears and a lot of information for Jackson’s family to process. “They told us to pack a bag and head to the ER as soon as possible and to prepare for a long inpatient stay. Later that evening, we spoke to an oncologist who confirmed the results and reviewed the plan for the next two years.” Jackson spent an initial 32 days inpatient at Boston Children’s Hospital and endured numerous bone marrow biopsies, lumbar punctures, needle pokes, blood transfusions and chemotherapy treatments. By October, just a month after being diagnosed, he was in remission but will still have to complete two years of treatment to ensure his cancer doesn’t return.

Jackson became one of ACCO’s 2024 Ambassadors and has been helping create content to share with our community. He received our medical play kit and sent us some clips using it. Watch below as he listens to his heartbeat and interacts with the kit through play therapy.

The biggest obstacle that Jackson has to face is that he is away from twin brother, Henry while in the hospital. The pair had never been apart for more than a day and this was incredibly difficult and confusing for the both of them. They missed each other greatly.

Jackson loves cars, trucks and monster trucks! He loves watching Blaze, Bluey and Storybots. He loves riding his bike and walking his dog, Maddie.

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

Learn more about ALL here.

Gold Ribbon Hero: Devyn

Posted on February 25, 2024 by American Childhood Cancer Organization

Meet Devyn, a 2-year-old stage 4 neuroblastoma survivor.

Shortly after Devyn turned one, she had eye swelling, sweating and pupil changes. After testing, biopsies and appointments, the doctors determined that Devyn had stage 4 intermediate risk neuroblastoma. Doctors found a large tumor in her chest and wrapped in her spinal nerves that had metastasized to lymph nodes in the right side of her neck. “The day of Devyn’s biopsy, both the surgeon and oncologist told us that the mass in her neck looked cancerous. We held our breath until that horrible phone call two days later confirming it was indeed, neuroblastoma. My husband and I are both nurses and we were devastated. We committed our lives to caring for others and never imagined illness would strike in our own home. There was a lot of silence and tears that day,” said Joanna, Devyn’s mother.

Devyn underwent chemotherapy and scans to see if they tumors could be removed surgically. Following chemotherapy, the plan was to do surgery based on scans but we are happy to report that the scans came back clear of any disease. Devyn was declared in remission in the beginning of August and will start maintenance thereafter.

“Devyn is a funny, spunky little girl who loves dancing, singing, and being outdoors. Her favorite thing to do is stomp around and pretend to be a dinosaur.”

Devyn’s maintenance ends March 2024.

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

Learn more about neuroblastoma here.

Gold Ribbon Hero: Ariana

Posted on February 18, 2024 by American Childhood Cancer Organization

Meet Ariana, a 7-year-old acute lymphoblastic leukemia warrior.

In early 2021, Ariana stopped eating and started experiencing vomiting, weight loss, stomach pain, bruising and petechia. She was taken to two doctors and when her pediatrician wasn’t helping, Ariana’s pediatrician was switched. “They saw her right away and didn’t look at me like I was crazy. She did a CBC and sent us to the emergency room immediately” said Monica, Ariana’s mother.

“The [car] ride there was scary, so many thoughts. We felt like the world was over.”

Ariana was diagnosed with acute lymphoblastic leukemia on February 1, 2021. She underwent chemotherapy almost immediately, a gallbladder removal and port placement. According to her mother, “she was on tract and set to finish, but relapsed three months before the end of treatment.”

According to our last update, Ariana is full of energy, even on her bad days. “She continues to surprise all of us.”

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

Learn more about acute lymphoblastic leukemia diagnosis here.

Joel’s Story

Posted on February 14, 2024 by American Childhood Cancer Organization

Every month, ACCO shares stories about children diagnosed with cancer from the parent’s perspective. Today, read about Joel’s journey through osteosarcoma.

Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Prior to our son having cancer, I followed two college friends’ stories as both of their sons were fighting leukemia. It was helpful to know some of the terms and lingo and have a small idea of chemotherapy protocols.

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?
My son had complained of leg pains and we were trying to determine the cause. Growing pains? It was during his basketball season so we thought maybe a muscle strain. He tripped and was in great pain and his leg swelled up. We knew it was time for x-rays to see what was going on. The doctor saw a tumor in his femur and we had an appointment at Duke 3 days later. After more tests, imaging, and a biopsy, it was confirmed to be osteosarcoma.

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?
Chemotherapy was hard to see our son endure. He fell after his first treatment resulting in a painful femur fracture- making his journey more difficult. In true warrior fashion, he held tight to his faith in God and leaned on Him for strength during the tough times of chemo.

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?
Joining the cancer club was something we never even thought of- no parent does! Your life goes from routine and schedules with family time, meal planning and grocery shopping… to doctor appointments, lab checks, watching for fevers, keeping the puke bucket handy, and praying that your kid doesn’t catch the common cold now that his immune system is near zero! Our son’s journey didn’t follow the usual script they told us about at diagnosis.

He faced many challenges; an angulated fracture from a fall, that was above the tumor. This led to weeks of immobility in bed with a pain pump resulting in a blood clot under the tumor area.

After the limb salvage surgery, his recovery had several complications to fight through. Our family was separated because of cancer and then because of COVID. Our girls were never allowed in the hospital and for several months only one parent was allowed in at a time.

Movies depict scenes of family visiting, playrooms, art, and pet therapy. That was not the case for us!

Recovery after chemotherapy ended was another transition to journey through together. Our family was surrounded by friends near and far, uplifting our son in prayer. Our faith carried us through the darkness times we faced in the battle against osteosarcoma. After treatment, we are healing both physically and mentally, adjusting to life after cancer and chemo. We have been able to share our story and encourage others in the club.

What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?
Currently, our son is 6 months NED!!!! His leg has not healed and he has limited weight bearing on that leg. He will face another surgery soon to help the healing process. We don’t know what his future will look like, but hold onto to our faith in God to get us through post treatment just as He did during treatment.

Update: January 2024 – Joel had surgery on his left leg (non cancer leg) to stop the growth plates. The right leg is growing at a slower rate so when it’s time to do the limb lengthening process (18-24 months) the limb difference won’t be as much.