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.

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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Meet Harper – a fierce 3-year-old childhood cancer warrior. Harper loves all things pink and loves to dance! 

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.

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 rang 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/

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

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/

Meet Grayson, a 10-year-old brain tumor and spinal cord tumor survivor! Read on for his inspiring, five-year battle and how he persevered. 

In October 2014, Grayson was a normal four year old boy – he loved playing ball, legos and being a normal kid. He started developing alarming symptoms like lethargy, dizziness and vomiting. Grayson was rushed to the ER by his parents and after much testing, it was revealed that he needed to be life flighted to Minneapolis Children’s Hospital. His brain had to be drained immediately because the pressure almost killed him. Six days later the neuro-oncologist gave the diagnosis to his parents. “This was one of the hardest days of our lives. We were told our spunky, smart, ball-loving, best squealer, four-year-old son had brain cancer: grade 2 diffuse astrocytoma (thalamus area), which is located in the middle of his brain, and it was inoperable.”

Options were limited for Grayson and included radiation treatment with chemotherapy or do nothing. He completed 30 rounds of radiation treatment without sedation teamed up with oral chemotherapy, MRIs and determination.

Nearly three years later, Grayson’s medication was switched. Grayson and his family traveled from the University of Minnesota Masonic Children’s Hospital to Children’s Hospital of Colorado. His new neuro-oncologist suggested taking him off of his medication which meant he was currently off of all cancer fighting drugs. He was not participating in radiation, chemotherapy or mekinist for 19 whole months. Two years later, a routine 3 month MRI revealed there was a very small spot contrast enhancing region in the original mass. Three months later, the hot spot was still present but changing on the MRI. It was decided in July 2019 that Grayson needed to be put back on Mekinist. In November 2019, Grayson was taken into surgery with “Rosa the Robotic Arm” to conduct a needle biopsy and thermal ablation.

In Grayson’s most recent update, he has been healing well from his brain surgery in December and his hot spot is reduced. According to his mom, Chelsey, “We are not dealing with grade 4, and the “hot spot” that was becoming a problem from January 2019 to November 6th has been thermally blasted. They will continue to watch Grayson closely (3 month trips to Denver for MRIs).” 

Grayson loves legos, hot wheels and playing with his siblings and friends. His mom said he is the best hugger!

Follow Grayson’s Journey here: @thepoptabkid

For more information on brain cancer, please visit: https://www.acco.org/brain-cancers/

Donate to help kids like Grayson, because kids can’t fight cancer alone!: https://www.acco.org/donate/

Meet the Rush family warriors: Tristen, 6, Caison, 3, and Carter, 8 months old. Each of the boys have bravely fought retinoblastoma at a very young age. 

When Angie Rush was an infant, she was diagnosed with retinoblastoma. She fought hard, survived and now has three young boys with the same diagnoses.  ACCO was lucky enough to speak with the Rush family and get some insight into their unique story.

After spending four weeks in the NICU, Tristen’s parents Angie and Aaron advocated to have his eyes checked which revealed that he had retinoblastoma. “When he was diagnosed, you always hope for the best and assume everything was okay. It was really heartbreaking for us, even though my wife went through it when she was younger – it was unknown. She went through it as a baby, so when your son has it, it was kind of a whirlwind and you don’t know what to expect. It was overwhelming and heartbreaking and for a brief moment you have sadness and crying and then it turns into determination” said Aaron. Their son Caison was diagnosed at just two days old after the parents urged doctors to check his eyes after Tristen’s diagnoses. For the first six months, Carter was tumor free but in January of 2020, doctors found several tumors in his eyes. “We thought he was free and clear and that he wouldn’t have it – but we just pushed through the sadness to tackle this cancer,” said Aaron.

Each of the boys’ treatment plans have been very similar. They have all had monthly eye exams, chemotherapy for six months, laser surgery as needed and evaluations under anesthesia. The chemotherapy has caused minor hearing loss in Tristen so he wears hearing aids. Caison currently has a small vision deficit in one eye which doesn’t seem to slow him down.

According to Aaron, the boys have been minimally affected by their diagnoses. Tristen is currently in survivors clinic status and has once a year eye exams. He is extremely personable and loves to make people laugh. He is funny, smart and full of energy. He loves to draw, playing outside, playing sports, helping around the house and swim, among other hobbies. Caison is in observation status and gets eye exams every three to four months. He is very friendly but shy. He loves to show people new things, playing in the dirt, being outside and making up funny stories. Carter is currently on active chemotherapy treatments and has monthly eye exams. He is a happy baby who smiles at everyone! He can roll over, sit up and is working on crawling.

Please help ACCO send well wishes to the Rush family!

To learn more about retinoblastoma, please visit: https://www.acco.org/retinoblastoma/

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

To donate to help kids like Tristen, Caison and Carter, please visit: https://www.acco.org/donate/