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Children

Staying Put

Why one mom chose hospital over home

Hyrum is a fighter. He is three years old and has Downs syndrome, epilepsy, and was recently diagnosed with leukemia. But he doesn’t let anything bring him down. Hyrum is a perky ray of sunshine who loves his family, meeting people while cruising the hospital floor, and oh, how he loves to sing.

“Music is his balm,” said his mother, April. “When a song comes on, he lights up completely. He isn’t extremely verbal, so music is how he communicates.”

Diagnosed with leukemia in October, Hyrum reached remission quickly but is currently in a very difficult portion of his treatment called delayed intensification. This eight-week phase is important in preventing leukemia from returning later in his life. And while her medical team has told April there was a chance she and Hyrum could go home for a week in the middle, because of COVID-19, she asked if they could stay.

“Hyrum has had health complications most of his life and is no stranger to respiratory distress,” April explained. “Most people would be praying they could go home for a week. But his little body can’t tolerate any respiratory problems. I can’t risk his life to be social, so we asked to stay here.”

Hyrum’s home is a busy place with a large family of nine, and he loves every minute of it. When he got sick, his older sisters who dote on him created his #hopeforHyrum hashtag that got him some attention from one of his favorite actors, Dwayne Johnson. Of course, Hyrum knows him only as Maui in the movie Moana – which he loves because of the music. While he misses home, April knows this is the right place for him during the pandemic.

“Being on this floor is our safety bubble,” April said. “I’ve barely left the room in three weeks and we won’t leave the floor until we go home. I don’t want to go to the cafeteria and potentially bring germs back to him. So the boxed lunch deliveries from CURE are a godsend to us right now.”

Fortunately, her doctors agree that Hyrum should stay put. Since he isn’t the typical leukemia patient, they won’t treat him like one – especially with his risk of complications from COVID-19 being so high. And how is the isolation treating April?

“I put on a brave face because Hyrum needs to know that I’m steady for him,” April said. “But there is an isolation that doesn’t leave. There is a sense of security that this virus has taken away because it has removed the ability to have all of the emotional, spiritual, and physical support we need. Facetime is not the same as getting a hug or seeing my kids in person.”

Right now, Hyrum is handling the isolation fairly well. Hospitals have been a major part of his young life and he’s used to being there. His birthday is on June 1, and everyone’s goal is to finish this portion of his treatment and get him well enough that he can celebrate being four at home.

The Face of Immunocompromised

When word of the coronavirus began to spread, Annie Garner knew just what to do.

“I told my kids it was time to hunker down,” she explained. “Fighting germs is nothing new to any cancer mom.”

Annie and her family have been in that fight germs since April of 2017 – when their youngest daughter Chloe was diagnosed with an optic glioma. The discovery of a tumor behind her eye was a complete accident. She had a slight head tilt and her parents noticed her eye shaking. Since Annie’s husband, Noah, is in the Army, they took Chloe to the base physician, who said she didn’t feel prepared to diagnose it and sent them to the hospital.

“We were supposed to be there for a quick 30-minute MRI,” recalled Annie. “But that turned into five hours. When the doctor finished, he came in and told me she had a tumor.”

Because of their location, it is rare for such tumors to be surgically removed. Most of the time, the goal is to stabilize them so they do not grow. Her doctors began to closely monitor Chloe’s tumor, and nearly a year later, the tumor was declared stable. Unfortunately, tumor growth was evident at a scan four months later, and even more in the next scan. So Chloe began a chemotherapy regimen designed to shrink it.

But a year’s worth of weekly chemo yielded frustrating results.

“From October 2018 to October 2019, her tumor would be stable at one scan and then grow at the next,” Annie said. “The one result we never got was tumor shrinkage.”

This is when Annie learned how to hunker down and become diligent about providing a germ-free environment. Because of the way chemotherapy works, children in treatment often have compromised immune systems. Despite all precautions, it is very hard to keep children completely protected. Chloe missed several doses of chemotherapy because she was sick or had low white blood cell counts, and at her last scan they learned that her tumor had grown again.

Her medical team came up with a new plan that involved a drug called Avastin. So far it has been far easier on Chloe’s body, and her last scan in February yielded great results.

“For the first time, we heard the words, ‘significant tumor reduction’,” said Annie excitedly. “And she hadn’t even completed the whole cycle!”

While Chloe is finally feeling good, her vision has been affected. She has optic nerve damage from the tumor, and her vision isn’t 20/20. But right now, she’s back to dancing and enjoying her favorite movie, Frozen. Her mother describes her as feisty and stubborn – traits that helped carry her through her difficult treatment.

Chloe still receives chemotherapy, and while her family has become good at being in quarantine, Annie worries when she sees others disregarding the World Health Organization’s advice during this pandemic. Her husband is currently deployed, so Annie has to fight this battle against germs alone.

“When experts talk about the immunocompromised people who have the highest risk of complications from COVID-19… that’s Chloe,” Annie said. “This is a dangerous time for her and other kids taking chemo. I just want people to think about others right now. Whether they are young or old, this matters for a lot of people.”

Annie urges people to heed the warnings to stay home.

“For the greater good – especially for all those like Chloe who are at high risk, please just stay home,” pleads Annie.

Coronavirus: What Childhood Cancer Parents Need to Know

By now, we’ve all become familiar with the signs and symptoms of COVID-19, as well as the steps the average person should take to help prevent the spread of the disease. Since the population that CURE serves is among the most vulnerable, we have compiled advice for parents who have children fighting cancer.

Many chemotherapy medications and targeted therapies used during a child’s cancer treatment can cause neutropenia, or depletion of the immune system’s white blood cells that fight infection. Because children with a weakened immune system may be unable to fight off the virus, parents should take steps to protect their children.

Experts recommend that everyone take common-sense precautions to prevent transmission of the new coronavirus. These precautions are nearly the same as the steps cancer parents take during flu season or when their child is neutropenic. Your medical team may offer other suggestions. As the situation is fluid, pay attention to emails and all other communications from your hospital.

If your child has prescription medications, try have a supply to last at least a couple of weeks and preferably a few months. The Food and Drug Administration is keeping track of medication shortages that may result from the epidemic. According to a recent statement, only one unspecified drug is now in short supply. No biological agents, such monoclonal antibodies or gene therapies, are made in China for the U.S. market, and there are no shortages. While it might be difficult due to insurance restrictions, try to get a 3-month supply or at the very least, renew your child’s prescriptions as soon as you are able.

 

Should I travel?

Most experts are encouraging cancer patients to stay off cruise ships and postpone air travel that isn’t directly related to their treatment. You should obviously follow the CDC’s travel recommendations – which are listed and updated here. When in doubt, ask your child’s oncologist.

What about school?

While the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta is not recommending children stay home from school or avoid school group activities at this time, they understand that you know best. If you choose to keep your child home from school, they will support you by providing medical documentation that may be required by your school system. The same situation should apply at your treating hospital. You can read their full recommendations here.

What if a family member develops symptoms? 

“Your family is important and you don’t want to avoid them, but if someone in your household gets sick, use some social distancing,” said Dr. Steve Pergam, infectious disease expert at the Fred Hutchinson Cancer Research Center. “Wear gloves, have them sleep in a different room if you can, make sure you wipe down areas with some sort of bleach wipes and keep washing your hands regularly. That’s really important.”

It’s also crucial not to bring a sick family member into your cancer treatment center.

“We need less people who are ill, not more,” Pergam said. “You don’t want someone going in with you even if they only have minor symptoms.”

Finally, he said it’s important to bring just one caregiver with you to treatment, not your entire family.

Should cancer patients (and survivors) avoid public transportation and events?

Pergam said people currently in treatment should avoid taking public buses or trains if at all possible. But he also acknowledged not every family can afford Lyft or Uber or some other rideshare service.

“Talk to your care team about what options exist to support you getting there without taking public transportation,” Pergam said. “Some hospital systems have services set up for patients.”

If you have no choice but to use the bus or a train, take precautions and distance yourself from others.

“Protect yourself,” Pergam said. “Sit in the back of the bus or other areas with less exposures and if you see someone who seems ill, coughing, move away.”

Pergam said cancer patients a few years out of treatment “should be OK,” but whenever possible should also avoid crowded buses or trains.

“If you have to get on a bus, practice distancing,” he said. “Or stay home if you can. It increases your risk when you are in public spaces.”

As for other public gathering places, Pergam again advised caution. Instead of going out to a movie, watch something at home instead, he said. Get take-out or delivery from your favorite restaurant instead of showing up in person. Or cook at home. Many grocery stores offer delivery service. You can even ask your pastor if they can set up a computer so you can go to “virtual church.”

“This doesn’t mean you have to be a hermit, just limit close interactions, particularly in public spaces,” he said.

Read the entire article here.

 

It is important during this time to stay in communication with your cancer team and keep up to date on new developments. Talk to them if you have questions or concerns, especially if you have new symptoms or were recently exposed to someone who is ill. While this could be a prolonged process, the best thing you can do is to monitor your child’s health and protect your family.

The following sources were used to compile this article. All are being updated frequently – bookmark them and refer to them as often as necessary.

Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta: COVID-19 and Oncology/Immunosuppression

Diane Maples, Fred Hutch Cancer Research Center:  Coronavirus: What Cancer Patients Need to Know 

Liz Highleyman, Cancer Health: What People With Cancer Need to Know About the New Coronavirus

Miram Falco, American Cancer Society: Common Questions About the New Coronavirus Outbreak

Three Brothers Winning the Fight Thanks to Early Diagnosis

While childhood cancers are rare, Tristen’s parents knew he had a better than average chance to be diagnosed with cancer. His mother, Angie, is a retinoblastoma survivor, and doctors had told her that there was a chance of passing the disease to her children.

Retinoblastoma is a cancer of the eye that most commonly effects young children. About 250 to 300 children in the United States are found to have retinoblastoma each year. Approximately 1/3 of those cases involve a specific genetic mutation and are considered hereditary. If one parent carries the mutated gene, each child has a 50 percent chance of inheriting that gene.

So when her first son was born, doctors immediately checked for the disease.

“Tristen was born early and spent about four weeks in the neonatal intensive care unit,” his father, Aaron said. “At three weeks, they found the tumor and started chemotherapy immediately.”

Their second son, Caison, was also born early and diagnosed with the same cancer at two days old. Because the cancer was detected early, both boys responded well to treatment. They haven’t had any new tumors in a long time, and they are watched closely by the doctors to ensure cancer doesn’t return.

“Angie’s treatment in the 80’s was much harsher than what the boys received,” Aaron explained. “She was older when they found the tumor, so it had also progressed further. They used intense radiation and cryotherapy which killed the cancer. But unfortunately, she wasn’t able to keep her eye.”

When their third son came along, they thought they had beat the odds. Just like his brothers, Carter was evaluated soon after his birth to see if he had any tumors. But unlike his brothers, doctors found no signs of cancer. But because of his genetics, Carter was monitored closely, and a tumor was found when he was six months old.

Like his brothers, the cancer was diagnosed so early that his prognosis is very good. Aaron says he hopes to use their story to raise awareness of childhood cancer.

“No one can imagine a family with three children who have cancer,” he said. “But knowing their genetics and their early diagnosis has been key in fighting the disease and preserving their vision.”

The Rush brothers underscore the connection between information and outcome. At CURE, we are laser-focused on improving outcomes for children fighting cancer. Because of their genetic makeup, the Rush’s medical team knew to check for cancer at its earliest stages.

Most childhood cancers are the result of genetic changes that happen early in the child’s life, sometimes even before birth. The typical childhood cancer diagnosis comes as a result of symptoms such as pain, swelling, or bruising, and almost always takes longer to discover than it did in the case of the Rush brothers. But if doctors had access to genetic information in the early stages, treatment paths may change and outcomes could improve.

“The way that we treat most childhood cancers now is by brute force,” explained Dr. Daniel Wechsler, Director of Pediatric Oncology at Children’s Healthcare of Atlanta. “We use drugs that have significant side effects. If we knew what particular drugs a child’s tumor was going to be responsive to, then we could use fewer drugs and get better outcomes.”

That is the premise of CURE’s Precision Medicine Initiative. By analyzing a child’s DNA, doctors are often able to discover genetic markers that help them tailor the perfect treatment to that child. This type of discovery is standard protocol for many adult cancers. But currently, only children with relapsed or high-risk tumors have their genes sequenced. Often, this is too late.

We believe that all children should receive the very best treatments available, and that begins by arming doctors with information. To that end, our goal is to make genetic discovery and genetic sequencing the first step in every child’s treatment.

Timothy’s Road to Health

Timothy is the kind of boy who would never let a little stomachache slow him down. A sports enthusiast, you could often find him with a ball in his hand – usually a baseball or football. But toward the end of 2017, a persistent stomach pain started to take its toll. As the pain’s severity increased, his mother, Sloan, began looking for answers.

“We began at our pediatrician and then progressed to a pediatric gastroenterologist,” Sloan recalled. “After about three months of trying things that didn’t help, the doctor ordered a sonogram.”

The sonogram revealed a tumor near his stomach and liver. Timothy was immediately prepped for a biopsy where the tumor was identified as neuroblastoma – a childhood cancer that develops from immature nerve cells found in several areas of the body. The diagnosis was a surprise because Timothy was eleven years old, and neuroblastoma most commonly affects children five or younger.

After the biopsy confirmed the results, Timothy had another surgery to add his port and started his first round of rigorous chemotherapy that was to last five months. While the treatment did wonders to shrink the tumor, it also ravaged his body at the same time.

“Timothy went from a healthy boy to a state of malnourishment,” Sloan said. “He was so sick that he got down to 48 pounds, and we had to have a g-tube placed to give him nutrition.”

The next phase of treatment was removal surgery. The chemo had worked to shrink the tumor, and during a seven-hour operation, doctors took out all they could. Because the tumor was wrapped around two major arteries, the surgeon was unable to remove it completely. Once he recovered, Timothy had a stem cell transplant followed by radiation, and then immunotherapy, which is a type of cancer treatment that boosts the body’s natural defenses to fight cancer.

The immunotherapy was particularly harsh on Timothy, and he spent weeks at a time in the pediatric intensive care unit. Through all of the difficult treatments, separation from friends and family, and time away from home, he never complained. Despite missing many days of school, he worked hard and was able to finish the sixth grade with all A’s!

Timothy has been declared No Evidence of Disease (or NED) for ten months. He isn’t quite finished with his treatment. In order to prevent a relapse, he is enrolled in a clinical trial and takes three pills twice daily. He will continue that regimen for another year and a half.

“All-in-all, Timothy is doing great,” said Sloan. “His weight is up to 80 pounds, and he’s looking forward to playing baseball again in the spring. We aren’t sure about football, but we’ll decide on that later. For now, we are just thrilled that he’s healthy again.”

Timothy’s family has expressed gratitude to CURE for helping them deal with the challenges of treatment. The hospital where he received the majority of his treatment was 80 miles from his home, and his stem cell transplant was 300 miles away. CURE was able to help ease the financial burdens of the travel through our family emergency fund – part of which helps with gas and other travel-related expenses.

“We want to make sure the high cost of transporting a child to treatment doesn’t take a toll on a family’s finances,” said Lisa Branch, CURE’s Director of Patient and Family Services.  “CURE is happy to be able to help families like Timothy’s in this way, because a long stretch of highway should never be a barrier to a child’s health.”

Blessings in the Middle of the Storm

When Jessica Brandon received the call that her six-year-old son, Drew, had collapsed in the school cafeteria, she didn’t know what to expect. Fortunately, she was a teacher at the same school, so she was able to be at his side in minutes. She arrived to find him bluish and struggling to breathe. After scooping him up and racing to the nurse’s office, she called 911. Soon they were both on their way to the emergency room. With oxygen, Drew was starting to look better.

“He had been just fine the night before,” Jessica remembered. “He struggles with asthma and had a couple of viral infections in recent months. But nothing like this.”

Doctors in the ER assumed Drew was suffering from another virus and ordered a chest X-ray of his lung. The next person to enter his room was an oncologist, and Jessica’s world changed forever. The X-ray showed a tumor the size of an adult’s fist on Drew’s chest wall between his lung and heart. His collapse was a result of the pressure exerted by the growing tumor pushing against his left lung. The same hospital had recently done an X-ray of his chest that showed nothing. Amazingly, the tumor had grown that large in just five weeks.

“When we learned about the tumor and put it all together, we realized just how lucky and blessed we were that he collapsed at school,” Jessica shared. “The doctor said he could have just as easily gone to sleep one night and never woken up.”

Drew was diagnosed with stage 4 t-cell lymphoblastic lymphoma. While the advanced stage of the disease was cause for concern, the prognosis was actually good because this type of childhood cancer carries an 85% survival rate. The treatment plan called for a strong regimen of chemotherapy that would last for three years and regular lumbar punctures to monitor Drew’s bone marrow. He started chemo within 24 hours of his collapse, and within a month it had melted the large tumor in his chest. Additionally, the cancer in his bone marrow was almost nil.

But he wasn’t done fighting. Drew seemed to suffer from every complication possible during his treatment. He got a blood clot in his shoulder that required blood thinners for several years, and that wasn’t the worst of it.

Five months into treatment, Drew became very sick and was taken to the hospital. While the chemo was destroying the cancer, it was also depleting Drew’s natural immune system. After a battery of tests, doctors discovered that five viruses had invaded his weakened body. They also learned that his heart was functioning at less than 30% of normal.

“They had no choice but to put him in an induced coma to let his body heal,” Jessica explained. “He was in a coma for four weeks, and during that time, he coded twice. Both times they ushered us into the hall while they performed CPR on the other side of the door. We thought we had lost him.”

But Drew is a tough one. In fact, Jessica calls him her fire-breathing dragon and says he is all-boy. Drew pulled through that difficult episode and took a little break from his cancer treatment to gain strength. Soon he was back to full chemo and his body seemed to tolerate it better this time. He finished treatment in August 2018 and turned ten in February. He loves soccer, building with Legos, and playing Fortnite and started the fifth grade in the fall.

“Drew was old enough that he remembers his treatment – both the good and the bad,” Jessica said. “He still hates having blood drawn. But the incredible doctors, nurses, and families we’ve met will always be a part of his life, and the blessings we received in the middle of the storm have made him stronger.”

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Lights for Ellie

For most, it is unimaginable that a child can be diagnosed with cancer. When it happens, everyone in the community wants to pitch in and help. Obviously, the patient’s parents are immediately overwhelmed with the treatment itself, and so many well-meaning offers of help can add stress to an already stressful time.

Brynn Draughon found herself in this situation in June after her daughter, Ellie, was diagnosed with cancer. Faced with a treatment that would force long hospital stays, she didn’t know how to channel the outpouring of love from her community. But then she and a friend came up with a brilliant plan.

Ellie has always loved Christmas. Since she was little, she has wanted her house to be awash in Christmas lights. Her dream has been to be in the family car, see lights from a distance, and feel the contented glow from her beautifully lit home. Unfortunately, her house is surrounded by trees, and it would take far too many lights to be bright enough to be seen from the street.

Earlier this year, Ellie’s leg started hurting. After visits to different doctors to identify the cause of her pain, a biopsy indicated that Ellie had osteosarcoma, a childhood bone cancer usually found around the knee. She started chemo right away, followed by surgery in September. The surgery took a good portion of her femur, most of her knee, and part of her tibia. The remaining bones were reinforced with rods to strengthen the new joint.

“She is recovering well,” said Brynn. “She still has pain and walks with a walker, but she has handled treatment better than I expected. Ellie has had a very positive attitude through the whole thing.”

Ellie is the youngest of four children and a senior at Woodstock High School. When her school and community learned of her diagnosis, offers of help poured out.

“We had so many friends, family members, neighbors, and strangers who wanted to help,” recalled Brynn. “While having a child diagnosed with cancer is the worst thing that can happen to a parent, the flip side is that you get to see a beautiful side of this world as people rush in to help.”

Brynn struggled with suggestions of how people could help until she remembered Ellie’s Christmas light dream. She decided that making that happen might be a way to keep Ellie’s spirits high during her long treatment. With the help of friend and fellow cancer mom, Anita Corsini, Brynn began the process of making Ellie’s dream a reality. Neighbors, classmates, and complete strangers donated toward Lights for Ellie, and it didn’t take long for the fund to grow well beyond what was needed. Together they found a lighting company to set up 15,000 lights in Ellie’s yard.

“We tried to keep it a secret from her, but there was no way we could,” laughed Brynn. “Ellie watched them set up the lights up one Saturday. When it got dark, we got in the car and drove around the block so she could see them as we approached. It was the first night she had felt true joy since she was diagnosed. We know it’s early for lights, but it really isn’t about Christmas. It’s about making Ellie smile – and hopefully bringing joy to others.”

Since their fund went way over the amount needed to set up the lights, the family has decided to donate what is left to CURE as a way to pay-it-forward. They’ve even put a sign in their yard thanking the community and pointing people to CURE as a way to raise awareness for childhood cancer.

And what does Ellie think about all of this?

“It’s really special to me that everyone in my community came together to make one of my childhood dreams come true,” Ellie said.

When she is home from treatment, she loves to sit by the window and look at the lights. It also makes her happy when people slow down to look at them.

Well done, Woodstock. You brought a young lady incredible joy during the hardest of circumstances.

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Doing Life on Eliza’s Time

Eliza is a happy, energetic 3-year-old who does things on her own schedule. She also happens to possess an extra chromosome. Being born with Down syndrome brings a unique set of challenges, including an increased risk for a variety of health problems such as heart defects, respiratory and hearing difficulties, and thyroid conditions.

At her tender age, Eliza has already had two open-heart surgeries – one when she was just four months old – and she has also faced another battle: cancer. Due to a combination of genetic factors, children with Down syndrome face a high risk for childhood leukemia. Their chance of getting leukemia is roughly 20 times that of the general population.

While recovering from her heart surgery, Eliza became sick. Her family took her to the hospital and what started as pneumonia ended up being much more. A blood test indicated leukemia blasts.

“The pneumonia was actually a blessing in disguise,” Eliza’s mother, Katie, said. “She was only seven months old and had been sick on and off since her heart surgery. If we hadn’t taken her to the hospital for the pneumonia, the cancer might have gotten worse.”

Eliza’s parents soon learned that she had acute myeloid leukemia (AML). This is where her genetic disposition helped her. The success rate for children with Down syndrome is actually higher with AML than the more common acute lymphoblastic leukemia (ALL). This is the opposite of the general population.

“We were told that their bodies just handle the disease better than the average patient,” Katie recalled. “So that was the first bit of positive news we received.”

For the next few weeks Eliza was a very sick little girl. Besides battling cancer, she had to fight off two viruses and start chemotherapy. But through it all, Eliza smiled even when she didn’t feel like it. Her strength shined through with every poke, stick, and bad-tasting medicine she did not want to take.

The hardest part for Eliza was being in isolation for a month. She couldn’t see her brother or sister at all and only had limited other visitors. She enjoyed connecting with her siblings through FaceTime, and they drew pictures to hang around the room to make it a happier place. Even though the nurses administered the pokes and sticks that caused her pain, she became fast friends with them and the other hospital staff.

Eliza has now been in remission for two years! She breezed through her treatment with an amazingly cheerful attitude. Likewise, her heart sounds perfectly healthy now – gone is the murmur that caused her early problems. She is healthy and growing strong.

“Eliza’s full name is Elizabeth Aveline – which means ‘strong little bird’,” Katie explained. “When we named her, we never dreamed that in just a couple of years we would learn how strong she is.”

Now that she is home fulltime, Eliza enjoys playing with her brother and sister, having random dance parties in the kitchen, listening to The Wiggles, playing dress up, and loving on her baby dolls. Like everything else, Eliza learns things when she decides it is time. She is starting to speak but prefers to use sign language at this point. But her mother is certain she’ll start talking when she is ready. After all, she’s doing life on Eliza’s Time.

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