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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

3 Steps to Financial Peace During Crisis

Alan Thomson, Certified Financial Planner

Peace: Stress-free state of security and calmness; the absence of mental stress or anxiety

Most will concede that peace in our lives is a bit of an elusive concept. Like many who are reading this article, childhood cancer assaulted my family’s stress-free state of calmness just over 15 years ago. Having spent my working days in the financial services world, I have come to believe that financial peace is no less elusive. Below are some thoughts on finding financial peace, particularly after our world has been under siege.

We reasonably believe the story that financial peace is a result of saving 20% of one’s income, living within ones means, and planning for the future. To be clear, these are all good things in and of themselves. However, they don’t hold the keys to financial peace. In fact, in the hardest times of our lives, these “keys to success” may only serve to frustrate our sense of financial peace.

Personal financial planning often centers on the balance of short and long-term goals with our needs and wants. When crisis erupts – such as when we watch our children fight for their lives, our short-term long-term scales cease to operate correctly. Indeed, for many of us the scale may completely break as we avoid making decisions with our personal finances.

After the trauma, how do we navigate back to a financial peace that eludes many in the best of circumstances? Though there is no definitive recipe, the below represent my thoughts and experiences. They are stepping stones I identified as a financial planner a few years after my wife and I lost our daughter, Hayley, to AML.

Grace  Putting together a bookshelf or installing a new garbage disposal? Maybe those are times when we can skip step one. This is not the case after a crisis; all steps must be followed and the first is giving grace. Allow yourself and your partner and your family to feel extra helpings of grace with regards to financial decision making, past financial mistakes, or general avoidance. Everyone reacts differently to the challenges faced when peace is removed, and the stress may take their financial habits to different and possibly competing extremes.

Trauma may create doubt about the future and foster a carpe diem financial mentality. Conversely, traumatic experiences may also lead us to overprepare and hoard finances. Communication is essential to recovery, and during those conversations, let grace abound. Regardless of how family trauma tilts your short-term and long-term scales, recognize the changes and be generous with grace as you and your family navigate your new financial world.

Joy  Most of us reasonably question how we will once again find joy after a trauma. We have seen the most innocent among us suffer deeply and joy may evade us for a season. What we have experienced, though, gives us a new insight as to where we find durable joy.

Ultimately, the suffering with which we have come face to face exposes the false joys and gives us clarity: clarity that our happiness going forward will be based neither on our balance sheet, nor income statement, nor upon any of the stuff our finances may afford. Rather, our deeper, more durable view of joy in our lives becomes elemental as we continue down our path towards financial peace.

Purpose represents the third stepping stone on our journey. When our worlds are shaken, so too are our priorities. We ask ourselves, why? Why us? Why our family? Naturally, we will struggle with our purpose, and specifically the purpose of our suffering. I firmly believe finding the purpose of our struggles is not terribly important. Believing there to be a purpose, though, is critical. By what other means can we possibly proceed into a future filled with just as many unknowns as our past?

When we recognize that there is purpose to our circumstance, we find encouragement to return to our short-term and long-term scales and re-calibrate them correctly. Our scales will never return to their original settings. We will recalibrate them informed by a past filled with heartache and grace, a present experienced with a more meaningful understanding of joy, and a future resting on the firm belief in a purpose to our challenges and our financial decisions. Yes, our scales will forever be set at a custom calibration… and that is a good thing.

Lendmark Climbs to a Million and Beyond

Would you walk a track or climb stadium stairs for two hours if it would make a difference for children with cancer? That is the question put to the employees of Lendmark Financial Services by CEO, Bobby Aiken. And for the third year, the answer was a resounding “yes!”

Bobby is passionate about finding cures for childhood cancer. Over the past decade, he has known three different young men who were diagnosed with varying types of cancer. All three survived, but their individual journeys caused Bobby to step back and rethink his view of challenges.

It was Chip Madren who had the most profound effect on Bobby. Bobby and Chip’s father, Ken, have been friends since childhood. The Friday before Chip was diagnosed with Stage IV Metastatic Anaplastic Medulloblastoma and given a very slim chance for survival, the three were fishing together – a normal weekend. But the news that broke on Monday was staggering.

“In less than five days, we fished, laughed, ribbed one another, encountered a diagnosis of cancer, endured the first of many surgeries, and felt hearts breaking all around us.” Bobby recalled. “I’ll never forget the tears that filled the eyes of my family when I shared the news. Life kind of seemed to stop in its tracks.”

As difficult as the early days were, it is the path since then that served as an inspiration to Bobby.

“I watched Chip literally fight for his life and win,” he said. “Chip’s fight has made me a better person and has positively impacted many, many lives.”

Bobby is a stadium runner and has spent the last few years thinking about Chip and kids like him who are facing the challenges of cancer while running. He had an idea. What if he took his love of stadium running and turned it into a fundraiser, engaging his company’s employees, partners and vendors in the fight against childhood cancer. The Climb to a Million was born.

In its first year, the climb raised $282,000 and $505,000 in its second. On September 22, 2018, Lendmark employees from all around the country gathered at the Oconee County High School stadium as a part of the third Climb to a Million to climb, walk, and sweat. Unlike most extended workouts, the spirit wasn’t somber or intense. Rather, there were smiles, laughs, and encouragement as everyone put in their steps toward the goal of raising $500,000 to fight childhood cancer.

But it was more than a workout. The morning started with skits by fundraising teams such as Cancer Busters, Pirates of the CUREibbean, and Hawaii-CURE-O. There was even a rousing song that got the crowd hopping: C-U-R-E to the tune of YMCA. Following the fun, everyone hit the track to put in their steps. Working together, they again surpassed the $500,000 mark making the three-year total more than $1,300,000 to fight childhood cancer. They want the money raised to support CURE’s precision medicine initiative, which involves precise, gene-based treatment.

“We are part of the precision medicine engine now,” says Ethan Andelman, Lendmark’s Chief Marketing Officer. “We want to see this innovative form of treatment become available for all children with cancer. We want to be a part of making that happen.”

While it started with the CEO, Bobby won’t take credit. “The Madren family is one of thousands that have to take on this fight every day,” he said. “It’s hard on every one of them and it’s a fight for every child. It takes every characteristic of strength, persistence, and faith; requiring reliance on one another and on those that surround them. They did it, they continue to do it, and they set the example for others to follow.

Click below to see the 2019 Climb to a Million.

How One Mom Uses Her Platform to Encourage Others

Words like “maybe” and “might” can be difficult to hear because they contain no absolutes. They are wholly dependent on something going right by chance or luck. When used to describe the potential success of a medical treatment, “it might” will fall short every time. Possibly, maybe, hopefully…none of these instill confidence – especially in a mother sitting beside her sick child’s hospital bed.

Anita Corsini learned this difficult truth when her son, Rocco, was diagnosed with cancer. After months of struggling with rashes, a distended stomach, and increasing lethargy, a photograph finally drove her to seek answers.

“I looked at a picture of him at the pool beside his friends,” Anita said. “It dawned on me that Rocco’s belly was different. I was concerned because it didn’t look like a normal, soft little belly.”

Her intuition was correct. By the time they arrived at the hospital, Rocco was declining. Doctors found a tumor on his kidney but couldn’t perform a biopsy because he was too sick. A scan indicated Rocco had a Wilm’s tumor, a childhood cancer of the kidney for which the prognosis is very good. He began the standard protocol right away but had a violent reaction to the toxic treatment. While the tumor was shrinking, the chemo caused an unusual reaction. The tumor began flaking off and releasing potassium into his bloodstream – which can lead to potentially deadly heart issues.

Although Rocco was very sick, the tumor did shrink so the doctors scheduled him for surgery to remove as much of the tumor as they could. They also removed a portion of his kidney and a week later discovered that his tumor was not Wilm’s at all. Rather, he had Burkitt’s lymphoma, a rare and aggressive form of non-Hodgkin’s lymphoma. There had never been another documented case of this type of cancer being on a kidney and nowhere else in the body.

With this new information, they had to start over – new doctors, new protocol, and new fears.

“I saw how the first chemo devastated him and knew that this one was more aggressive,” recalled Anita. “I looked at the doctor and told her I was afraid this treatment would kill him.”

“It might,” the doctor replied.

It wasn’t said callously or with an intent to scare. It was said in honesty. Anita and her husband, Ken, knew that while it might kill him, it might work as well. It was also Rocco’s only chance. So with prayer, tears, and hope, they proceeded, and slowly Rocco began to improve. Both Ken and Anita are people of faith and they give credit for Rocco’s improvement to a higher power. Over the course of the treatment, things such as the misdiagnosis, his unexpected responses to chemo, and numerous trips to the ER gave Anita the quiet confidence in her heart that God was still in control despite circumstances outside of the norm.

While Rocco’s cancer improved, long hospital stays took an emotional toll. He truly hated being there until a nurse came up with the “Rocco Bucks” system. For every procedure he was forced to endure, Rocco was paid in bills featuring Angry Birds characters. It changed everything. He got to spend his Rocco Bucks on whatever toys and trinkets staff had available and he even got to camp out in his room for a few bucks a night. The distraction kept him going and soon he was cancer-free.

As life slowly started to get back to normal, a production company called the Corsinis and asked if they wanted to interview for a house-flipping show. The family business, Red Barn Homes, has been flipping houses in Atlanta for over a decade. Despite their experience, Anita was so confident that they wouldn’t be chosen that on the day of the Skype interview, she rushed home from the gym and threw her hair in a ponytail. Undeterred, HGTV offered them a show: Flip or Flop Atlanta, which is in now in its second season in the prime slot of 9 pm.

As a special part of the show, Anita decided to add something to honor all children and families who are connected to childhood cancer. Drawing again on her faith, she staged a pair of angel wings for the reveal at the end of every show.

“Angels in the Bible aren’t just messengers. They are powerful warriors who comfort and protect at God’s instruction. I use wings as a symbol of hope and encouragement to all in the community to remind children and their families that they are not alone.”

Rocco is eight now and doing everything an eight-year-old boy should be doing. Mercifully, he has even forgotten most of the hardest parts of his treatment. But his parents haven’t forgotten and are dedicated to helping others who are on a cancer journey – whether it is through service, prayer, or a strategically placed pair of angel’s wings.

 

 

 

CURE and the Handmade Home

Anyone who has a brother knows there is an ever-present threat of injury. The only questions are: how much will it hurt and will it force another trip to the emergency room. Jamin had many of those bumps and bruises growing up with his brother in Birmingham, and he inflicted a few of his own. During a particularly rough wrestling match in 1982, Jamin took a knee to the back that caused some discomfort. He didn’t think much of it until he noticed blood in his urine the next morning.

“You would think it would freak me out,” Jamin said. “But I was just a six-year-old kid… so I thought it was a pretty cool trick.”

When he shared his newfound ability with his mother, however, she raised the appropriate alarm. Jamin’s pediatrician was also concerned and immediately told them to go to the hospital. Doctors there discovered a large tumor on Jamin’s kidney. Both the tumor and the kidney were removed the next day and the ensuing pathology revealed it to be a Wilm’s tumor, the most common type of kidney cancer in children.

Wilm’s tumors often become quite large before they are noticed. So the blow from his brother likely hastened Jamin’s cancer diagnosis. At the time, Wilm’s tumors were being studied and treatments were rapidly evolving thanks to the work of Dr. Sidney Farber, founder of Dana-Farber Cancer Institute, and many other researchers. The cocktail of chemotherapy Jamin received in the early 1980’s, experimental at the time, is now the standard protocol for all kids with Wilm’s tumor, and survival rates have eclipsed 90%.

At the time, Jamin didn’t really think about what kind of chemo he was getting. He had some nausea and lost his hair, but it didn’t get him down. In fact, besides missing his friends sometimes, he was pretty happy to have excused absences from school and loved all of the presents he received.

“I really don’t remember feeling isolated although I’m sure I was at times,” he recalled. “As I got older, I began to understand what happened and the potential side effects. But I’ve had no problems at all.”

After receiving his degree at Auburn University, Jamin became a youth pastor. He and his wife, Ashley, now have three children and live in the Nashville area.  Ashley began looking for an outlet for her creativity, so she started writing about home design and renovation. In 2014, Jasmin and Ashley launched a full-time business, The Handmade Home. Together they create designs all over the country, work with brands, and offer tips and advice to those looking to improve their home. Their mantra is to stop pining away for the perfect home and make the house you live in one you love.

We met Jamin and Ashley when they entered the Frogtape Design Challenge and chose CURE as their charity of choice. While CURE didn’t win the contest prize, we gained something much more valuable – new friends!  We are grateful for Jamin and Ashley’s desire to help children fighting cancer so that one day, every child diagnosed will be able to live their dreams… just like Jamin has.

Two-Time Cancer Survivor uses her Love for Jewelry to Give Back to CURE.

Paige JansenPaige Jansen is a two-time cancer survivor with a purpose. While going through chemotherapy, Paige was struck as she watched young people suffer through treatment. “How unfair,” she thought. “There has to be something that can be done so that someone at such a young age does not have to suffer.”

Paige’s focus changed from her own poor prognosis – only a 20% chance of survival and more than one cancer diagnosis – to the struggles of other cancer patients. In 2007, she launched Saint Vintage Jewelry, an eco-friendly luxury brand that gives back to cancer research.

Paige works fervently with her team to fund cancer research one piece of jewelry at a time by donating up to 50% of the proceeds to cancer research all year round. Saint Vintage takes pieces of the past and turns them into trendsetting treasures. Known for her hand crafted designs, Paige uses a combination of vintage and antique embellishments, along with semi-precious stones, Swarovski crystals, antique glass, vintage beads and antique pearls, crafting truly one of a kind bracelets, necklaces and earrings. A number of celebrity fans have linked arms with the Atlanta-based brand, including Rachel Bilson, Jaime King, Mindy Kaling, Zooey Deschanel and Giuliana Rancic and more—all in the name of finding a cure.

In addition to funding cancer research through CURE, Stand Up to Cancer, and other organizations, for the last three years, Paige has lovingly donated an exquisite piece of jewelry to each honored mother attending “A Tribute to Our Quiet Heroes,” more than 750 pieces in total.

“Paige is an incredible inspiration and true champion,” says CURE Executive Director, Kristin Connor. “She’s taken her own life challenges and channeled them into something extraordinarily impactful for all who face cancer today and who will face cancer in the future.”

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