Gold Ribbon Hero: Chase

Posted on June 7, 2020 by American Childhood Cancer Organization

Meet Chase, an 19 year old Ewing’s sarcoma hero. ACCO was lucky enough to speak to Chase directly in a video chat along with his new wife, Sadie and his parents, Brad and Kelli.

13726562_10206567847178900_7404735113292067136_n Chase is a swimming enthusiast to say the least. He was a star swimmer on his team and during an out of town swim meet, he was having trouble. Chase’s teammates were upset with him because they thought he was not putting forth the effort but when he teared up doing leg lifts his coach (and father) knew there was something more going on. His parents thought it was just a torn muscle after observing his swollen legs and when the family got back into town, they went to the doctor. An x-ray was taken and showed a large tumor on his femur. The following week, Chase had a biopsy and for the next year he had chemotherapy and multiple surgeries. At that point, he was declared to have no evidence of disease.
67924892_10214901474034363_6236773481409675264_n In 2016, doctors found another mass near his femur and in his lymph nodes in his groin. Chemotherapy and radiation started almost immediately and in the summer of 2018, he was declared with no evidence of disease. Chase started a maintenance drug for the next two years and in March 2019, a small nodule was found in his lower left lung. Chase had surgery to remove part of his left lung with no radiation or chemotherapy. In April 2019, doctors found another tumor behind his esophagus and left lung.
He started chemotherapy at the Cleveland Clinic and met with a new doctor to assess the treatment plan. In April 2020, doctors discovered the cancer had spread to his shoulder, hip, rib, skull, and lungs. Chase elected to forego any hospital-stay chemotherapies and opted for radiation instead. “At this point, we are taking a tactical approach to treatment,” said Kelli, Chase’s mom.
It was at this time that Chase was given only a few months to live. His positive attitude radiates and he tries living every day to the fullest.

Chase credits his success in his cancer journey to his support system. “I am who I am because of these people. To me, before I was diagnosed with cancer, swimming was my world and my passion. That was my one love in life. Once I was diagnosed and matured a little bit [and experienced a few things] my support network and those people around me are my passion and my love in life…they keep me going every day.”

101614396_10163661013170113_7248504000654344192_o In April, Chase married his soulmate, Sadie Mills. “Sadie has been regarded as my angel. She calms me down when I am spiked up and having trouble with pain. She is able to get my heart rate down.” Chase and Sadie began dating just six months before getting married and according to the couple, they knew they were soulmates from the beginning. After meeting at a swim meet and exchanging phone numbers, they texted back and forth for a few weeks. Finally, Chase asked Sadie on a date. The weekend that they were supposed to go out, Chase realized that he had his SAT test among other commitments. He explained it to Sadie who said, “If you want to go on a date with me, you will find time.” Chase knew after that comment that Sadie would fit right in with his family and lovingly calls her a “spitfire.” For the first couple months of dating, they had deep conversations which helped speed up their dating process. Within the first couple weeks, Chase knew that he wanted to marry Sadie.

Chase and Sadie got married on April 29, 2020 in her driveway where they had their first kiss. She walked down the aisle to Chase in the same spot where he walked her to the door. With the help of their sisters, Kaitlin and Savannah their wedding went off without a hitch. Their sisters engaged the community to come together and help throw the wedding of their dreams. When asked how married life was going so far, Chase said, “It’s been the best month of my life.”

wedding-13 Faith has helped Chase and his family get through his cancer journey and Chase tells people any chance he can. “If you are positive everyday, at least you are taking something out of the cards you are dealt with.” Chase’s mom, Kelli suggests that parents should question the doctors until you get the answer you’re seeking. She says, “get a second opinion if it doesn’t feel right for you. It’s so easy to take what the doctor says. My son is not a number, he is not a statistic in the text books.” Both Brad and Sadie agree that Chase has taught them to cherish each day and not to waste them. 94259583_3125319150865666_1332054858127114240_n

Kaitlin, Chase’s older sister, wanted to shed light on siblings and their stories, since it affects them in other ways. She encourages siblings to reach out to other family members to talk.

Both Brad and Kelli had heard of ACCO before we reached out and encouraged ACCO to develop resources targeting siblings and dads specifically. From their perspective, sharing stories of children and their battles is essential because “it is a very lonely world in the pediatric cancer realm and there is not a lot out there for people to learn.”

Chase turned 19 on June 4, 2020. Please help ACCO send well wishes for Chase’s birthday and for a successful treatment and watch the happy couple’s wedding video below.

Update: April 5, 2021

After a six year battle with Ewing’s sarcoma, Chase passed away on April 4, 2021. Read more here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Gold Ribbon Hero: Eva

Posted on June 1, 2020 by American Childhood Cancer Organization

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Meet Eva, a forever 7 year old medulloblastoma warrior. Eva was a girly girl who always had her nails painted, loved playing with her brother Paddy and lived for ‘smuddles,’ a hug and squeeze from the ones she loved.

Eva was co-raised by her aunt, Tracy and her grandmother, Geraldine along with Tracy’s husband, Alan and brother, Paddy.

When Eva started to become agitated and lose her appetite, her family took note. When her uncle got married, Eva was very quiet which was very uncharacteristic of her normal sassy self. Two weeks later, Eva experienced a seizure while drinking milk. The seizure caused her to be unaware of her surroundings or her family in the room. When Geraldine called the doctor, they suggested just giving her an over the counter ear infection medication and said if things progressed to take her to the ER. Thankfully, they were able to fit her in on the same day and checked her ears. Eva was sent home with pain relief medicine. Screen Shot 2020-05-28 at 8.30.24 AM

Days before she was diagnosed, Eva started walking funny around the house and complaining of neck pain. She started demonstrating a head tilt and after many months of complaints and doctors visits, Tracy took matters into her own hands. After Eva had another seizure, Tracy took Eva back to the office and demanded to see a different doctor. This time, the doctor looked into Eva’s eyes and knew something was wrong. She excused herself from the room and called the emergency room to tell them she had a patient coming down with either a viral brain infection or medulloblastoma. The doctor noticed a very heavy buildup of fluid behind her eyes which was alarming. When the doctor came back into the room, she told the family she suspected it was a viral brain infection and that she needed an intravenous antibiotic. The doctor sent Eva in for an MRI and on October 3, 2012, Eva was diagnosed with stage 4 anaplastic medulloblastoma.

At the time of diagnosis, the doctors said they found a “mass” on Eva’s brain. The thought of “cancer” never entered Tracy’s brain and she thought it was benign. “They told us there was a mass on her brain. And you know what’s really funny about that time is when they said there was a mass on her brain, I still didn’t think it was cancer. I genuinely didn’t even know that children get cancer, isn’t that ridiculous?”

Five days after diagnosis, Eva had brain surgery to remove the golf ball size tumor. During her surgery, doctors noticed that the tumor had spread around her head and down her spine which they couldn’t touch. She was considered to be stage four at that time and was given a 30% chance of survival. During her 12 hour operation, Eva needed a blood transfusion and was watched a few days afterwards to see if she needed a shunt placed. Unfortunately she developed an infection in her brain and recovered quickly. Eva 2012 Pose

Eva was the second child in Ireland to receive the Milan protocol for the aggressive treatment of medulloblastoma. From reports, it was promised to give great results. She received a total of 12 months of chemotherapy, 6 weeks of radiotherapy twice daily and two stem cell transplants. As a result of treatment, she had nerve damage that would ultimately confine Eva to a wheelchair.

In June 2013, active treatment was complete and Eva was considered to have no evidence of disease. The next month however, Eva started to fall for no reason. Tracy called the oncologist who brought her in for another MRI. Another mass was found on her brain but not in the same spot. They found three particles but doctors did not think it was cancer. By October of 2013, Eva was unable to walk. She had lost all function and reverted into a baby. She had no control over her body, wore diapers and could not feed herself. Eva was still mentally and intellectually a four year old but unable to control her body. Screen Shot 2020-05-28 at 2.42.43 PM

When Eva lost her hair she looked at Tracy, gasped and said “look Trace, can you put that back in?!” Tracy took the hair and hid it behind her back and told her a “tall tale” about how some boys and girls hair go on a special adventure and that Eva’s hair is going on an adventure of its own which sparked an idea in Tracy. From then on, she’d tell Eva silly tales of adventures that “Hair” would go on, which became a character in their household.

Eva’s dream was to meet a princess, specifically Cinderella and for her Make-a-Wish, she was able to meet Cinderella in Disneyland in Paris. When she finally met Cinderella, Eva was completely speechless and in “awe” of her. That evening, the family was even able to have a dinner with Cinderella.

After missing so much school, Tracy decided to send Eva to a specialized school which would help with inhouse physical and occupational therapy among other specialized treatments. The school was almost 60 miles away but Eva loved it. She enjoyed the bus ride and would tell her family about her adventures every day. She would get her aide to help her play pranks on the principal and give silly nicknames to the bus driver.

Eva was put into a program at Stoke Mandeville hospital which helped her spine and brain. The family changed their life completely by changing their eating habits and supporting her immune system with the most natural ingredients. She seemed to be making good progress and even learned to feed herself again. At this time, Eva was even able to stand for 20 minutes with a standing frame.

In October 2015, Eva had seemed agitated again and by the end of October she complained of a sore neck again. She would cry at the drop of a hat and did not seem like she was in a good place. At her next doctor’s appointment, Tracy told the oncologist about her neck pain and was encouraged to wait for an upcoming MRI. Eva’s family was already aware that if she had a relapse that there was no more treatment available to her and if the treatment didn’t work, the options were to participate in a trial or to simply do nothing.

“In that entire three year period this was the only appointment I could not go to. I could not hear what the guy would say, so I sent my husband. I knew in my gut that something was wrong. I texted my husband throughout the day asking for updates. Now looking back, it was a coy way of saying nothing, but to me – it looked like hope and I took it. He responded with ‘all was well, the doctor wanted to see her again and we are on our way home’ and I didn’t think anything of it” said Tracy.

The oncologist said that there was a new trial that had existed however he felt that Eva had enough treatment and suggested morphine. Heartbroken, Tracy and her family decided to bring Eva home and keep her out of school in the middle of November. Unfortunately, Eva gained her angel wings in November of 2015.

Eva’s legacy lives on in the series, “Eva’s Adventures,” which is Tracy’s passion project. She wanted her legacy of helping people to live on and has gone on to open up a charity of her very own and a park which features a “smuddle” park bench. They have held various fundraisers which has enabled the family to donate funds to other families in need and for cancer research in Ireland.

It should be noted that in late 2014 the oncologist that initially introduced Eva into the Milan protocol presented Eva’s case at a conference. He met several other doctors that had the same experiences with the treatment. Since then, the Milan protocol is not being utilized in Ireland.

Follow Eva’s Adventures and Tracy on social media below.

Learn more about Medulloblastoma by clicking here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Gold Ribbon Hero: Jericho

Posted on May 24, 2020 by American Childhood Cancer Organization

GRH Jericho Meet Jericho, a 4 year old B-Cell Acute Lymphoblastic Leukemia warrior.

At just 3 years old, Jericho was experiencing a swollen, bruised and spotted stomach accompanied by fevers, so his parents took him to the doctor. The pediatrician sent the family to the emergency room. His parents suspected some sort of infection but when doctors and nurses started running additional tests, they knew it wasn’t just an infection. Tests were completed overnight and the next morning doctors confirmed the leukemia diagnosis. “Our world collapsed, it changed our lives completely. We were devastated, terrified and deflated. We felt crushed for a while, then accepted it. We were ready to kick cancer” said Jami, Jericho’s mother.

Treatment began immediately with weekly chemotherapy treatments and physical therapy for the next three years. In his first month of treatment, he had a picc line placed which is now a port implant. “We were bombarded with medicines, schedules, routines that we must keep, words that we had no idea what they meant or how to properly say some of them, nurses, oncologists, anesthesiologists, child life specialists, chaplains, and all other forms of hospital staff,” remembers Jami.

Jericho has had several lumbar punctures and had a very serious allergic reaction to PEG chemotherapy. Jericho went into anaphylactic shock and received compressions for 27 minutes before regaining consciousness. On the way to the PICU he went into cardiac arrest and received compressions for an additional 13 minutes before regaining consciousness for the second time. Doctors confirmed there was no sign of brain damage so they unhooked him from monitors. Last July, Jericho’s parents decided to shave his head after several handfuls of hair began to fall out. He was so upset, but in December of 2019 his hair began growing so fast, it needed a trimming!

A year into his battle, Jericho is four years old, full of life and happiness. His family helps him celebrate small victories and make the most out of every day. He loves spending time with his family and playing with his brother, Jamison. He loves to swim, play outside, play with friends in Sunday school and play on the swings.

Follow Jericho’s story on Facebook @MarchingAroundJericho.

To learn more about Acute Lymphoblastic Leukemia, go here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

What Life Looks Like for Childhood Cancer Survivors

Posted on May 22, 2020 by American Childhood Cancer Organization

More than 1,300 children in the U.S. will be diagnosed with cancer this month alone. With the treatments available today, 4 out of 5 of those children will survive. On the surface, that sounds like good news, but these numbers don’t tell the whole story.

The numbers don’t tell you what kids have to go through to be cancer free. And they don’t tell you what life is like after childhood cancer.

Many children will face learning problems, growth problems and developmental delays that can result from years of too-harsh treatments on small, growing bodies.

They’ll have endless appointments with endocrinologists, neurologists, psychologists and countless other specialists to manage the lasting effects of treatment.

Some will have psychosocial issues when they go back to school and try to resume a “normal” life after months or years spent isolated from their peers.

Some will have mental health problems like depression, anxiety and even PTSD from the trauma of childhood cancer treatment.

Many will have late effects that follow them well into adulthood, including fertility problems, secondary cancers, and increased risk of other health problems such as diabetes, obesity and heart disease.

And many will live with a constant, nagging fear that the cancer will return — a fear that flares with every little headache, pain or bruise.

This is what life is like for childhood cancer survivors. Two out of three childhood cancer survivors are left with a chronic illness from their treatment. The remaining third are the lucky ones, but even they will face physical, mental and emotional challenges in the years after treatment ends.

For survivors like Abby, the effects of childhood cancer and its treatment are something they deal with every day. Two years after the surgery to remove her brain tumor, Abby is living with a side effect called posterior fossa syndrome, which causes her to have learning delays and bouts of anger, confusion and frustration. “She will never be the same,” says her mom, Debbie, “but no child is after a battle with cancer.”

No, the statistics don’t tell the whole story of what it’s like to be a childhood cancer survivor. So while we celebrate that 4 out of 5 children will survive their diagnosis, let’s not forget that their survival comes at a price — one that they’ll pay for the rest of their lives. This National Cancer Survivors Day, let’s honor our youngest cancer survivors for all they endured, and for the many ways they continue to fight long after their cancer is gone.

The American Childhood Cancer Organization provides resources, information and support to children with cancer, survivors and their families. Honor childhood cancer survivors with a donation so they can get the critical help they need.

Gold Ribbon Hero: David Jr.

Posted on May 16, 2020 by American Childhood Cancer Organization

Meet David, an adventurous 8-year-old DIPG warrior. He is a bear cub scout and a roller coaster enthusiast with a zest for life! david1

David Jr.’s symptoms came on quickly. Within a day his parents knew something was wrong. David was participating in his weekly jiu jitsu class when he could not roll. His grandfather brought him home and his parents noticed that his head was wobbly and tilted and he was acting goofy. David’s parents took him to the pediatrician who suggested David could have gotten into some medication. The doctor had ruled out an ear infection and possible recurrence of torticollis, a problem with the muscles of the neck that causes the head to tilt down. When David was a baby he had suffered from this condition and his parents thought this could be a recurrence. The doctor sent him home and said that if he had any headaches or was dizzy to bring him back to the office.

On April 17, 2018, David was taken back to the doctor’s office because of dizziness and a headache. The pediatrician mentioned that it might be a brain tumor, but his mother remembers laughing it off thinking it was so off course. The pediatrician advised his parents to take David to the ER for fear of a stroke. After a stat MRI, the ER doctor told them that there was a mass on David’s brain.

david3 David was brought into the PICU almost immediately where they met the oncologist who advised David and Elizabeth about David Jr.’s condition, DIPG. Diffuse Intrinsic Pontine Glioma (DIPG) remains one of the deadliest forms of childhood cancer, with a long-term survival rate of less than 1%. After receiving the diagnosis from the oncologist, David’s parents decided they wanted to get a biopsy even though that was against the head of pediatric neurosurgery. They were advised that having the biopsy would not change the result and a cure didn’t currently exist.
David Jr.’s parents were not accepting this, so they decided to go forward with the biopsy. He received 30 days of radiation to his brainstem and then received radiation in 2019. In the summer of 2019, David made his way to Cincinnati for a trial. Unfortunately, he was denied admission because he was doing ‘too well’ to participate. The family was advised to bring him back after Christmas.

In December 2019, he lost the use of his right hand. He was on a match trial in January of 2020 and by February of 2020 he was in the ER. He was extremely lethargic and the tumor had changed. He was prescribed high dose steroids again and they waited. The first week of April during the covid pandemic, David was rushed to the hospital. This time he stayed for five days and doctors were thinking of doing radiation for the third time. In late April, David was having problems breathing. He underwent radiation for the third time and just last week he got out of bed by himself, with no assistance!

Like night and day, David went from being unable to roll, speak, move, breathe properly, and david2 swallow to talking like normal, walking normally and getting around with no assistance!

Every day, the Turner family talk about their “good day score” and last week David said he had an “11, because I got out of bed and walked by myself!” This week, he rated one day a “14” because of surprises throughout the day.

David is surprising all of the doctors with his turnaround. His family went from talking about end of life care to walking around normally. During his DIPG journey, David has remained positive. When he was initially diagnosed, his parents had pre-existing plans to take him to a popular outdoor event in his hometown and they weren’t missing it just because of the diagnosis. He told his mom that “today was the best day ever” and asked if they could come back next year. Of course they did. David’s parents were dedicated to making memories with him while he was able to get around and remember. For a 9 month diagnosis milestone, his parents celebrated with a Chuck-e-cheese party. For the one year diagnosis, his parents celebrated with a Nerf party.

“Life with David is an adventure everyday. We have done as much as we can. He went to kid prom, he has been traveling and riding roller coasters. He loves to go to the beach. We have made every day the best day ever and an adventure for him. We wanted him to have as many memories as possible” said Elizabeth. david jr

This past January, David was able to meet the Governor and Senator of Kentucky where he rummaged through their desk drawers and banged the pens on the desk. Both the Governor and Senator welcomed David and helped declare May 17 as DIPG Awareness Day. Last year 32 states got proclamations passed and this year the proclamation was signed for DIPG awareness. David even declared Ice Cream Day at the youth advocacy day in the rotunda this past January.

Follow David’s Adventures on Social Media:
Facebook: @davidsadventuredipg
Instagram/Twitter/TikTok: @davidjrmom

UPDATE: May 21, 2021 – David Jr. battled DIPG since 2018 and this morning, David passed away.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Gold Ribbon Hero: Haven

Posted on May 10, 2020 by American Childhood Cancer Organization

grh haven copy

Meet Haven, a brave cancer warrior that was taken too soon. Haven fought a long battle with B-cell acute lymphoblastic leukemia (ALL) for almost five years with a smile on her face and concern for people around her.

At just nine years old, Haven was experiencing fevers and swollen lymph nodes. On April 24, 2015, she was diagnosed with B-cell ALL. “We went to get blood work to see why she was having fevers and we were in utter shock hearing the word ‘leukemia,’ ” remembers Haven’s mother, Magan. Haven’s parents were fearful and heartbroken but Haven remained positive with a “let’s beat this” attitude.

Treatment started almost instantly and Haven received two and a half years of chemotherapy. She had a port placement and removal as well as a hickman placement and removal. Haven went into remission for 15 months and then relapsed again. This time, treatment consisted of four months of chemotherapy and a bone marrow transplant which resulted in Haven going back into remission for seven months. On December 20, 2019 Haven relapsed and sadly passed away on January 7, 2020.

Haven was very strong. When she relapsed the first time, she told her mom that ‘at least it was her and not someone who couldn’t handle it.’ One of Haven’s favorite things to do was cooking and she always wanted to feed everyone. Haven asked that her family help feed other families on the oncology floor during the holidays in honor and in memory of her. “Even on her deathbed, she was still worried about everyone else and was not scared. She was at peace knowing that her life would soon come to an end,” Magan said. Days before Haven passed she said that she was grateful that she had received the bone marrow transplant since researchers could learn from her story.

To learn more about ALL: https://www.acco.org/childhood-leukemias/

To nominate your own Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

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

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®.

For more information about how ACCO can help your family, call 855.858.2226 or visit:

Gold Ribbon Hero: Pryce

Posted on April 27, 2020 by American Childhood Cancer Organization

Meet Pryce, a 5 year old, cancer warrior. He loves legos, coloring and of course, his brothers and sisters.

ACCO was lucky enough to meet Pryce and his family last year after engagement on social media. Pryce’s fun personality and funny pictures compelled us to reach out. Pryce is the youngest of five children and spunky to say the least!

Leading up to Pryce’s diagnosis, he had low grade fevers and leg and hip pain. Pryce’s mom, Katie remembers, “we were blindsided. Cancer was not even on our radar.” The doctor’s continued to run tests for a few days and Katie remembers the concern on their faces. He was diagnosed in August of 2018 with stage 4 neuroblastoma.

35E78147-9C0F-428D-94DD-5CDD3612041C Treatment for Pryce included 10 rounds of chemotherapy and 8 rounds of immunotherapy. He went through 12 rounds of radiation, 2 stem cell transplants and multiple surgeries. During the last stage of treatment, the doctors found that his cancer had spread to his brain. On January 29, 2020 Pryce underwent emergency brain surgery. The doctors removed a golf ball size tumor, followed by intense treatment. Since January, Pryce has received 3 rounds of chemotherapy and 12 rounds of radiation to his brain and spine.

52993938_834166273604036_6427088640551157760_o The next phase of Pryce’s treatment will be in New York, however it has been put on hold due to the coronavirus. Currently, he is undergoing extra rounds of chemo to keep the disease stable until it is safe to travel. His next brain surgery will be to place an Ommaya port.

Through all of his treatments, Pryce has a smile on his face. He spends time FaceTiming his brothers and sisters because he misses them so much. He is a silly little boy who loves to play with his siblings and build legos (he’s built more than 300 sets since his diagnosis). Cancer does not define Pryce and he doesn’t let it hold him back.

42900721_740418436312154_371154100009566208_o Pryce’s 5th birthday is on May 2, 2020 and his family has organized a parade in his honor. Since Pryce’s wish trip to meet Mickey Mouse has been postponed, the family thought this might help him celebrate in a magical way. Join ACCO in sending Pryce birthday wishes for a most magical birthday!

Pryce will be featured in our Giving Tuesday Now campaign – learn more here.

– Update, September 2020-

Pryce has been battling stage IV neuroblastoma since August 2018. He had clear scans in August 2019; but right before the end of his treatment protocol, he relapsed. At first they believed it was disease in his skull, but they later realized it was a CNS (brain/spinal) relapse. Pryce had emergency brain surgery in January 2020 to remove a golf ball size tumor. After surgery, radiation, and chemo; his brain/CNS was clear again. His family traveled to NYC for an experimental treatment to keep his CNS clear, but before he could begin treatment, Pryce had relapsed for a second time. Pryce is currently back in Michigan undergoing a treatment that combines chemo and immunotherapy. He’ll do two rounds and then rescan to see if the treatment is working.

Amazon selected Pryce to be an Amazon + ACCO Ambassador in late August and you can find downloadable content here to share about Pryce today.

Follow Pryce’s Story on Facebook and Instagram – @PrayersforPryce EF264129-9ADB-479E-A808-9562FA2C54BD

You can help kids like Pryce by making a donation to the American Childhood Cancer Organization. Your gift will help provide educational resources and support programs for children with cancer, survivors and their families, as well as raise awareness about childhood cancer and the need for more research.

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Nominate your Gold Ribbon Hero here: https://www.acco.org/gold-ribbon-heroes/

Why Diseases Like COVID-19 Are Scary for the Childhood Cancer Community

Posted on April 22, 2020 by American Childhood Cancer Organization

Over the past several weeks, millions of Americans have had their lives turned upside down. Schools and offices are closed. Weddings and vacations are cancelled. We don’t get together with friends. We avoid leaving the house unless it’s necessary. And we don’t know when, or if, life will ever return to normal. quinn_in_hospital_ copy

In some ways, we’re getting a taste of what daily life is like for so many children with cancer.

Children with cancer fall into the category of “immunocompromised” — a word that’s been thrown around a lot since the novel coronavirus came to the public’s attention. Being immunocompromised means that your immune system doesn’t work as well as it should. Sometimes it’s because the cancer itself weakens the immune system. Other times it’s because the treatments — chemotherapy, immunotherapy, radiation — wipe out the immune system, leaving you vulnerable to even the most commonplace germs.

Having a compromised immune system means you’re at greater risk of falling ill from viruses and bacteria in your environment. It also means that you’re at greater risk of developing serious complications from those illnesses. So something as simple as the common cold could mean a lengthy stay in the hospital for a child with cancer. It could mean bacterial pneumonia or meningitis. It could mean emergency surgeries and IV infusions. And, even with the best doctors and nurses at their bedside, it could still mean death.

Parents of children with cancer know this, so their families live life differently. They wash their hands dozens of times a day. They carry antibacterial gel and disinfectant wipes everywhere. For the child with cancer, birthday parties, sports or other events where they’d come into close contact with their peers are a no-go — they may go weeks, even months, without leaving the house or their hospital room. Something as basic as going to school once they’re well enough can be terrifying for their parents when even the slightest cough could land the child back in intensive care.

Many parents today can take comfort in knowing that most COVID-19 cases in children appear to be mild. But for parents of children with cancer, there is no solace because COVID-19, like the flu or the common cold, could easily be what takes their child’s life.

This is why social distancing is so important. Children with cancer need you to help keep them safe. So many of the changes we’ve had to come to terms with recently are already second nature for these kids, but that doesn’t make them any less difficult. They’re already missing out on school, playdates and so much of what defines childhood, and their restrictions won’t end when the government lifts them for the rest of us.

So please, do your part and stay home. We owe it to children with cancer, and to all the most vulnerable members of our community, to do what we can to stop the spread of the coronavirus. Their lives are depending on it.

We know these are difficult times for everyone, and so many are struggling financially. If you are able, please consider making a donation to the American Childhood Cancer Organization. We remain committed to our advocacy work and offering resources to children with cancer and their families, and we need your support now more than ever.

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Gold Ribbon Hero: Harper

Posted on April 20, 2020 by American Childhood Cancer Organization

Meet Harper – a fierce 3-year-old childhood cancer warrior. Harper loves all things pink and loves to dance! B9B3394B-6DE8-4D68-9385-B62517E38550

In June 2017, Harper was not feeling well. She had trouble keeping things down after eating, was very lethargic and looked very pale in color. After receiving some concerning lab results, the doctor told Harper’s parents she needed to go to Dell Children’s Hospital. Her blood cell counts were off the charts which pointed to a preliminary diagnosis of leukemia. At just 10 weeks old, Harper was diagnosed with infant Acute Lymphoblastic Leukemia with the MLL gene. Her prognosis was 10% chance of survival. Harper’s parents were initially fearful, angry and prevailed with faith. A710E1EF-D6EA-4D66-A26F-8E22A418DCE6

Treatment was aggressive and included numerous procedures and medications. After 8.5 months of hospital stays, six round of chemotherapy (12 different kinds), 21 blood transfusions, 11 platelet transfusions, 10 lumbar punctures with more to come in maintenance, 5 foley placements, 2 broviacs placed, 1 ng tube placed, more than 35 dressing changes and over 10 sedations – Harper was able to come home in January of 2018.

Today, Harper is in remission and ra 81D846F4-FA0E-404B-96EE-DC2CF41C9A2F ng the bell in July of 2019! She is developing into a happy and healthy toddler alongside her twin brother, Cruz. Harper laughs, giggles, plays, claps and dances. “For those who battle cancer and win, ringing the bell is a battle cry of accomplishments. It signifies the ending of treatment; the defeat of cancer,” said Harper’s aunt, Lindsay Hill.

To follow Harper’s story: https://www.caringbridge.org/visit/harpercouch

To learn more about ALL, please visit: https://www.acco.org/blog/causes-risk-factors-and-prevention-of-childhood-leukemia-cancer/

You can help kids like Harper by making a donation to the American Childhood Cancer Organization. Your gift will help provide educational resources and support programs for children with cancer, survivors and their families, as well as raise awareness about childhood cancer and the need for more research.

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Nominate your Gold Ribbon Hero here: https://www.acco.org/gold-ribbon-heroes/

Gold Ribbon Hero: Anastasia

Posted on April 6, 2020 by American Childhood Cancer Organization

Meet Anastasia, a sweet 3 year old with aggressive optic nerve glioma. GRH Anastasia

When Ana was just two years old, she was completely blind. Anastasia’s mom, Graylenee, advocated when doctors wouldn’t listen. Ana was taken to the eye doctor who said that everything looked good and that she would probably snap out of it. Ana’s mom didn’t think this was the case so she took her to a neurologist. He asked if they had a cat in the house. Graylenee said they had just gotten one, and the doctor suspected “cat scratch fever.” The neurologist ordered an MRI but the first available appointment was three months away. A resident with the neurologist looked at the doctor and said, “this is not cat scratch fever, if it gets worse in the slightest way, take her to the ER where they have to do a scan that day.” Determined, Ana’s mom took her straight to the emergency room and told them she was having seizures, even though she was not. She was desperate to find answers and wanted the scan done immediately. The CAT scan revealed that Ana had an aggressive optic nerve glioma. “We were devastated, heartbroken and petrified. All I could think about was, was our daughter going to die?” remembered Graylenee. Ana’s diagnosis was on December 20, 2016.

Treatment was aggressive for Anastasia. A total of 10 different chemotherapies and debio 1347 with shrinkage was administered, but all standard chemotherapies were resisted. Radiation was not an option. Ana has had a craniotomy, shunts placed, biopsies, a Gtube and a mediport placement. Her tumors have been successfully reduced, only to grow back.

In the past few months, Ana was able to go to Disney for her wish trip and she was able to meet Amy Poehler on Christmas in 2019. Ana had major brain surgery in December, and doctors said she wouldn’t live through the week. She proved them wrong, which has happened several times through her treatment. “She smiles through her pain and refuses to give up,” says Graylenee.

Most recently, Anastasia has entered hospice care. Graylenee is still searching for other options, but at this moment there are no more treatments available. “Anastasia has her ups and downs, but every day she always manages to find a reason to smile. We are just praying for a miracle,” said her mom.

Please join ACCO in sending well wishes and a birthday message to Anastasia and her family during this time.

Follow Anastasia’s Army: @AnastasiaArmy

To learn more about brain tumors, please visit: https://www.acco.org/blog/childhood-brain-tumor-cancers-detection-and-diagnosis/

You can help kids like Anastasia by making a donation to the American Childhood Cancer Organization. Your gift will help provide educational resources and support programs for children with cancer, survivors and their families, as well as raise awareness about childhood cancer and the need for more research.

Donate

Nominate your Gold Ribbon Hero here: https://www.acco.org/gold-ribbon-heroes/

Gold Ribbon Hero: Chase

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

UPDATE: May 21, 2021 – David Jr. battled DIPG since 2018 and this morning, David passed away.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

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

About American Childhood Cancer Organization

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