Category

Childhood Cancer

Getting Back to Normal

High school years can be tough. While some teenagers seek the spotlight, others just want to blend in – especially if they are going through something difficult or out of the norm. This was Katie Rutherford’s experience. After fighting cancer, Katie is looking for every opportunity get back to normal.

“It’s not easy being bald as a teenage girl,” Katie explained. “Not everyone knew about my cancer, so my first day back to school I got a lot of stares. But my friends were so supportive and when I started wearing head wraps some of them wore them with me.”

Katie’s cancer journey started with a bump on her chin. Tiny at first, it grew larger until it was the size of a quarter and very hard. After several trips to dermatologists, urgent cares, and the emergency room, a doctor used the word “malignancy” in her hearing.

“When the doctor said that word, I locked eyes with Katie and asked her if she understood what we had just been told,” Katie’s mother, Karen, recalled. “Katie nodded her head slowly and then we were thrown headfirst into the pediatric cancer world.”

Katie’s diagnosis was rhabdomyosarcoma, a very aggressive form of soft tissue cancer and soon she began a 48-week chemo regimen that also included 30 days of radiation. Since her diagnosis date was at the tail-end of her sophomore year, this meant that her junior year of high school would basically be a loss.

“I missed a lot of time, but I didn’t fall too far behind,” Katie said. “My teachers were very accommodating and I was assigned a tutor who helped me stay on track. Besides prom and a couple of football games, I didn’t get to do a lot socially outside of school and the hospital, though.”

Because of the location of the tumor, Katie had to have radiation from her mouth down to her chest. This resulted in awful mouth sores that left her unable to eat, drink, and talk. To make matters worse, while receiving radiation she still had to have regular chemo treatments. Even during this pain, she was determined to perform in her school plays.

“Getting back to normal was always my goal,” Katie said. “But now that I’ve watched young children fight cancer and know some who didn’t make it, I don’t know if I’ll ever get all the way back to normal.”

Katie’s treatment ended when she was junior and she has had a great senior year. In the tradition of the theater, she kissed the stage with her fellow seniors and will graduate from Parkview High School in a few weeks. She plans on attending Valdosta State in the fall where she will study communications. As for a career, she is leaning toward writing and she is also interested in politics. In whatever she does, Katie hopes to shine a light on issues related to pediatric cancer.

“When I was in treatment, I didn’t plan for the future at all,” Katie explained. “We had to take everything one day at a time until it was over. I didn’t really think about college. I won’t know anyone at Valdosta State and that’s a little intimidating – but I will be just another freshman there and don’t have to be ‘that cancer girl’ anymore.”

Katie’s strength and determination have set her up for success in whatever field she chooses. Many childhood cancer survivors will be graduating both high school and college this month and we applaud their accomplishment. Our goal is for every child diagnosed with cancer to overcome their sickness and get back to normal… just like Katie.

Crossing the Finish Line

In this disposable world, very few things seem to last 25 years. But when something touches enough people’s lives it becomes engrained in the very fabric of the community. So it is with Lauren’s Run. On April 28 we celebrated the 25th Lauren’s Run and CURE Childhood Cancer Annual Picnic. The first running was in 1992 after the Zagoria family lost their beautiful daughter, Lauren, at the age of 2. In 2001, another Atlanta toddler, Lauren Kochman, passed away after battling neuroblastoma and the Kochman family joined the Lauren’s Run efforts in 2002. Today we run in memory of both Lauren’s – as well as in honor of the thousands of other children who have fought childhood cancer.

This year’s race started off in spectacular fashion as a beautiful double rainbow greeted us at the Concourse Office Park. The temperatures were perfect as runners began to arrive and warm up for the 5k. After the winners were announced and medals presented, the founders of the original race were honored and recognized as VIPs and the mothers of the two Laurens shared their emotions as they considered how much has been accomplished in their daughters’ legacies.

In the crowd was a special little boy named Knox. Knox and his parents were preparing to run the 2k. Although he is only seven, he’s traveled a long road to get to this point.

His journey started very early. As other boys his age were starting to walk and become rambunctious balls of energy, Knox refused to walk and was oddly sedate.

“I knew something wasn’t right,” said his mother, Kimberly. “We took him to several different doctors and got all kinds of opinions. They finally landed on synovitis – a virus that affects hip movement and told me it would run its course. I wasn’t sure, but miraculously he started walking and we thought his health scare was over.”

Knox’s newfound vigor lasted for six months when he refused to walk again. At the stubborn insistence of his parents, Knox was given an MRI which revealed a neuroepithelial spinal tumor – a tumor so rare that it was only the 9th diagnosed at CHOA. He was scheduled for immediate surgery during which Knox’s surgeon scraped every bit of the tumor he could find. A tiny portion remains, but it has never grown or caused him problems since. After a very tricky year of chemotherapy, Knox’s treatment was complete. But there are lasting effects.

“There were moments during our journey where we had no idea if Knox would ever be able to run let alone walk having a spinal tumor,” Kimberly relayed. “We have watched him since he was a baby learning to walk, try to figure out how to cope with it. He trips often, calls himself slow, has been made fun of and looks different when he runs. It never breaks his spirit.

“Today marked a huge milestone in our family’s life as we watched our son cross the finish line in his first 2K. To watch him dig deep today, stop to rest and talk with his friend Lake who is in Heaven, and persevere to finish strong melted my heart. I have learned so many life lessons from these sweet kids. If you had asked me yesterday if he would have been able to do this I would have bet no. It’s a testament to the fact that you can truly break any barrier and do anything you set your mind, heart and soul to do.”

Knox’s resilience represents the spirit and hope we celebrate at Lauren’s Run and the CURE Childhood Cancer Annual Picnic. It is a spirit of a community committed to conquering pediatric cancer and it cannot be denied. To date, Lauren’s Run has raised more than $4.4 million in the fight. Some of the original research funded in its early years is now frontline therapy for children fighting cancer. Children like Knox – who deserve the opportunity to cross the finish line.

 

Watch Knox cross the finish line at Lauren’s Run:

A Grandmother’s Lap

There is nothing like a grandmother’s lap. Warmth, comfort, unmerited praise, and unlimited protection are found in that special place. It is a happy land of yes when the rest of the world shouts no.

Diane Rochester knows all about having grandchildren in her lap. Diane hails from Salem, Alabama. She has two adult children and now she loves to read, work in various ministries at her church, and garden with her husband. Most of all, she loves her family and adores being a grandmother.

The first to call her that name was Noah. Noah was born in an orphanage in Vietnam in 2000. After a long adoption process, he finally came home to his family when he was four months old. The entire family fell in love with him immediately.

“He was just the sweetest baby,” Diane said. “My daughter and her husband were so proud of him. As he grew up they loved to ride bikes and camp out together as a family.”

But at the age of seven, some red spots on his neck took them to the emergency room where they discovered that Noah had acute lymphoblastic leukemia (ALL). Noah would spend the next seven years fighting cancer. He reached remission twice during that time. But relapsed when he was twelve.

“He needed a bone marrow transplant but because of his heritage, we knew a donor would be hard to find,” Diane explained. “We finally found a match, though. He spent Christmas in the bone marrow transplant unit and we were very hopeful.”

Unfortunately, an infection set in that Noah’s weakened immune system couldn’t fight. He succumbed to the disease on Feb 14, 2013, devastating his entire family and breaking Diane’s grandmother’s heart.

“I’ve never cried so much in my life as when we lost that sweet boy,” she recalled.

Just two months later, Diane’s son had a little boy and they named him Ashton. Nothing could ever take Noah’s place, of course. But Diane was ready to have another baby in her lap.

“Ashton is a sweet boy, too” Diane doted. “He loves to swim and play pretend. He’s also very independent. He likes to do his own thing!”

Ashton’s mother was not a U.S. citizen and began having immigration difficulties that prevented her from becoming a naturalized citizen. In early 2018, she made the decision to return to Mexico while they continued the process of obtaining a visa. When school ended, Ashton flew to Mexico to spend the summer with his mother. While he was there, sickness forced a hospital visit where an MRI revealed a tumor on his kidney. His father immediately joined him in Mexico and brought him back to the U.S. for treatment.

“We were in shock,” Diane said. “Can you imagine – two grandsons with cancer? Ashton was only five and the tumor had grown to the size of a cantaloupe. They had to remove it and one of his kidneys, too.”

The tumor was a Wilm’s tumor – the most common type of kidney cancer in children. After successful surgery, Ashton began chemotherapy designed to prevent the cancer’s return. He has been going once a week for outpatient treatment. There was a rough patch when he had chemo and radiation combined, but he is finished with radiation and soon to be finished with treatment completely. Diane says that he bounces back quickly each week and is doing well and ready to get back to kindergarten.

“People think childhood cancer is rare,” Diane said. “But that’s simply not the case. If you think it is, this is one grandmother who can set you straight.”

 

 

Looking at Dee-Lenna

Dee-Lenna has a sparkling personality and a joy that shines through whether you’ve known her for years or just been introduced. She is a freshman at Georgia Southern University and is studying to be a nurse. She has always wanted to be a nurse, although she recently narrowed her choice of specialty to pediatric oncology – which is slightly ironic because she didn’t know what an oncologist was until her senior year of high school.

After fevers, chills, and weight loss drove her to seek medical attention, Dee-Lenna was seen by several specialists while waiting for a diagnosis. The doctor who kept coming back was an oncologist. His presence alarmed her family, but he was just another in a series of doctors to Dee-Lenna. It was the oncologist who finally revealed the problem: Stage Four Hodgkin’s Lymphoma.

“Everyone in the room was crying except for me and my brother,” Dee-Lenna said. “I was shocked and scared, but I felt more of a relief because we finally knew what was wrong with me.”

Her treatment started right away and consisted of several months of chemotherapy and radiation.

“Radiation was the easiest part, and I didn’t really mind losing my hair,” she recalled. “But the chemo was awful. It made me so sick all the time, and once I spent four days in the ICU.”

Her medical treatment was only half the battle. Because of the side effects, Dee-Lenna was forced to miss most of her senior year of high school, and she fought emotional battles that threatened to shatter her self-esteem.

“I’ve never cried so much in my life. To the public eye, I was the strong teenage girl who wouldn’t let cancer take over her life. But behind closed doors, I was a mess. I honestly think that because I portrayed myself to be okay 24/7 despite undergoing treatment, people actually believed it. I felt like I was crying for help, but no one could hear me. Sometimes, not even family.”

While she was able to attend prom and graduation, she missed out on almost everything else. But friends did everything they could to keep her from feeling left out. Through the entire journey, her classmates and community were always behind her. Students from the senior class put together a prayer vigil for her during their senior skip day, and they all showed up on school grounds. And there were constant parties for her: parties to celebrate the end of chemo, the end of radiation, her eighteenth birthday, and even a head-shaving party. They celebrated everything together and watched as the days passed until her treatment was finally over.

Dee-Lenna achieved remission in July 2017 and finished treatment around the same time she walked the aisle as a high school graduate. She credits her friends, family, and specifically her mother for helping her through her cancer ordeal.

“Mom was my biggest supporter from day one,” she beamed. “It was a hard year, but I know my God didn’t bring me this far just to leave me. You’re looking at a Stage Four Hodgkin’s Lymphoma Survivor!”

 

 

New Year’s Goals and Grief

by Carleen Newsome, LPC, CPCS, ACS Clinical Director at The Summit Counseling Center

If you have experienced a major loss this year, the last thing that may be on your mind is New Year Resolutions or 2019 Goals. It is possible you are still in the midst of grieving, and just when you feel you have taken a step forward, you wake up feeling you have taken five steps backward. Maybe the goals that were important to you before your loss hold little importance to you now. For many of us, New Year Resolutions often include losing weight, and concentrating on losing five pounds may seem ridiculous to many on the heels of losing a child or spending a year in and out of the hospital fighting for your child’s life. So, should we just forget about goals this year and give ourselves a break? Possibly. But I would like to suggest an alternative look at goal setting with grief in mind. Goals, when appropriate, can help us stay healthy and resilient in our deepest grief. Here are five goal setting ideas specifically designed with grief in mind.

Allow yourself to lean into your pain for defined and limited time periods.

It is important to lean into our grief at times, allowing ourselves to experience sadness and name the things we are missing. In fact, it is even okay to feel sorry for ourselves. We may ask, “Why did this happen to me when others seem to skate through life with minimal trauma.” Leaning into our grief allows us to move effectively through the stages of grief. Avoiding our emotional pain can contribute to feeling stuck and hopeless in our grief. On the other hand, simply leaning into grief can become overwhelming. An appropriate goal for 2018 may be to find “the middle ground.” Give yourself permission to lean into grief but give it a time limit. For instance, you may decide to stay in your pajamas and cry on the couch one morning. Allow it, but plan to get dressed by noon and meet a friend for lunch or go to the grocery store.

Practice self-soothing techniques during difficult emotions.

On those mornings when you allow yourself to grieve until noon, head to a designated spot in your home where you keep distress tolerance tools. Have a basket filled with items that can soothe your emotions as you experience them. Practice soothing all five senses. In the basket put a plush blanket, hot water bottle and your child’s favorite stuffed animal to soothe your sense of touch. Include a scented candle, essential oils, and your favorite scented lotion to soothe your sense of smell. Find other items to soothe your sense of sight, taste and hearing. To be most effective, keep them together in one place and use one item for each sense simultaneously.

Take a shower and get dressed each day.

Whether you intend to leave the house or not, plan to shower and get dressed each day. An appropriate goal would be to do that each morning even if you plan to binge-watch Netflix. Put a limit on your grief and accomplish something each day that gives you a sense of Mastery. A sense of Mastery is the feeling you get when you push yourself and accomplish something that in turn makes you feel better. This is one of the first steps in lifting depression and it is called Behavioral Activation. Behavioral Activation means that instead of waiting until you feel better to accomplish something you push yourself and end up feeling better as a result. A sense of Mastery may come from something as simple as making a few important phone calls or writing a block of thank you notes. It is definitely easier to accomplish something after you have taken a shower and dressed.

Identify three things each morning that you value.

Although there may be mornings where you would rather not face the day, turning our minds to those things that we value can create a different mindset for the day. Sometimes this practice is called gratitude journaling. Because I believe it is hard to be grateful when you have experienced the death of a child, I like to call this practice acknowledging the things that are going right in the midst of our loss. What is going right? It could be that the air is crisp and the sun is shining. It could be that a friend called last night and it was a comfort. It could be that I slept through the night. Focusing on these small gifts helps us navigate grief and become more resilient.

Give of your time and talents where you can.

We know that focusing on the needs of others and feeling that we have made a positive impact gives our life purpose and meaning. Having purpose and meaning increases our life satisfaction. It does not take away our grief but it helps us create a new normal and allows us to begin to create a life worth living. It is not a surprise that so many people who have lost their child find a way to give back to their community. Giving back honors the child, keeps their memory alive, and allows us to positively impact the pain of someone else who may be going through a similar event.

 

These may not be your typical New Year Resolutions but they certainly are life transforming, loving, compassionate, and healing! I challenge you to try them and find at least one that would make a positive impact on your life this year.

A Survivors New Year’s To-Do List

by Lillian R. Meacham, MD

It is important that childhood cancer survivors focus on staying healthy after cancer. Here are some helpful tips to consider:

1. Make your appointment to visit a cancer survivor clinic. Survivor visits begin when you are two years past the completion of cancer treatments. If you have reached this milestone, talk to your oncologist about a referral to the Aflac Cancer Survivor Program. In the cancer survivor clinic, you will be educated about your risk for any late effects which might be side effects from your cancer treatment. You will also be checked for those side effects through labs or screening tests. You may see an oncologist, an endocrinologist, a pediatric psychologist, and a social worker. The number of providers you see is based on your health needs. If you already attend survivor clinic, be sure to make your appointment for 2019.

2. Find and review your survivor healthcare plan. If you have already been to survivor clinic, review the survivor healthcare plan you received in clinic. The survivor healthcare plan will outline the cancer treatments you received, the late affects you are at risk to develop, and how the survivor team plans to check you for any late effects. If you have any questions about what you find in your survivor healthcare plan, jot them down and bring them to clinic with you. If you can’t find your survivor healthcare plan, check Cancer Survivor Link online! If you are registered for Survivor Link at www.cancersurvivorlink.org, each year when you come to the Aflac Survivor clinic the team will upload the newest version of your survivor healthcare plan to your electronic record.

3. Learn a new self-management health skill. If you are an adolescent or young adult, work on a new survivor skill. A parent of a younger survivor could help him or her choose and develop a skill. This could be the survivor calling to make the clinic appointment, making the co-pay at the time of the appointment, or downloading the survivor healthcare plan from SurvivorLink. You may choose to know the names and doses of your medications or call in the refills this year. There are many skills that need to be learned, but if you learn them one at a time you will have them all down in no time.

4. Be sure to keep seeing your primary care provider for normal child and adolescent medical care and visit your dentist twice a year. Sometimes there are so many specialty doctor’s visits, it is hard to fit in the “normal” visits, but they are important too. You want to keep your primary care physician up-to-date on your health so he or she can take care of your routine medical needs. Also, don’t forget to get your teeth cleaned and eyes checked.

There are several skills a young survivor needs to learn to maintain health. By working to master one or more of these skills in the coming year, you will be setting yourself on the right path to a healthy life after cancer.

Cheering for Lauren

When Lauren was only two years old, her parents noticed a lump in her abdomen and got the worst news imaginable. Their happy, beautiful baby was diagnosed with neuroblastoma – a pediatric cancer of the nervous system. They immediately entered a world of chemotherapy, radiation, surgery, and too many side effects to mention. But after several months, Lauren’s tumor shrunk, and she was declared cancer-free.

When her health improved, Lauren dreamed of being a cheerleader. She joined a competitive squad and even made her school team. She loved every practice, meet, and football game and she worked very hard to be her best. At 15 she was primed for high school cheering until she began experiencing hip and leg pain that sidelined her. Being so active, a doctor suggested that she had arthritis in her hips so her first attempt at recovery was physical therapy.

The PT actually helped for a time; but the pain came back. In February 2017, an MRI revealed new lesions and she discovered that once again, neuroblastoma had invaded her body. In all, the imaging indicated 28 spots that were likely active tumors.

The first four cycles of chemotherapy stabilized the tumor but didn’t shrink it. She moved on to immunotherapy which is supposed to attack just the offending cells and leave healthy cells undamaged. She spent alternating weeks in the hospital for over a year. That treatment failed also.

Her next treatment consisted of a targeted radiation called MIBG therapy.

“MIBG made me very sick and uncomfortable,” Lauren recalled. “I had to stay by myself in a room with lead walls to contain the radiation. Even when I got out I couldn’t be around people for two weeks so I wouldn’t expose them. We thought I might glow in the dark, but I never did.”

After the treatment, Lauren’s follow-up MRI showed 18 spots remaining. That was a good reduction, but not enough. Her doctor recommended that she undergo MIBG again. But remembering the side effects she had the first time, Lauren didn’t want to do it until her mother talked her into it. The second round took her disease burden down to 14 spots and she cannot do radiation again because she has already received her lifetime maximum dosage.

She and her doctors are now looking for other options to finish the cancer for good. In the mean-time, Lauren has been pain-free since March and her energy levels have returned to normal. She has a positive and hopeful attitude. She loves school and hopes to become a dermatologist when she grows up.

“I spent my Sweet 16 getting scans and the nurses and child life specialists threw me a party,” Lauren laughed. “I appreciated it so much. But even better, we found out that the new treatment was working! The disease in my bone marrow was lessening, and the tumors were shrinking! My hair is growing back! My cancer journey has made me realize that you have to live life to the fullest and never give up!”

CURE invests $4 million annually at leading pediatric research centers with one goal in mind: safer and more effective cures for childhood cancer that will allow children like Lauren the opportunity to live full lives and reach for their dreams. See how you can join us by visiting our website.

Cap & Gown… and Cancer

Last weekend, Kennedy Cobble walked the aisle beside 2000 other graduates at the University of North Georgia. While many were watching, few in the audience truly understood how many steps it took her to get there. When she was in the eighth grade, Kennedy was diagnosed with Osteosarcoma – an aggressive bone cancer. Over the next four years, she would beat cancer not just once, but four times: once in her sacrum, twice in her lungs, and once in her tibia.

“The hardest part was for me was that I had to watch my friends move on while I took a year off because of treatments,” Kennedy said. “Falling behind is hard for a girl in high school.”

After finally achieving remission, Kennedy graduated high school in 2011 and then took more time off. It wasn’t the average gap year. Kennedy would need three years to fully recover – not from cancer, but from the years of harsh chemotherapy that wreaked havoc on her body.

“When I finished fighting the cancer, I had to fight the side effects from the treatment. Doctors replaced my sacrum, the lower half of my spine, and part of my pelvis,” she detailed. “I had to have a knee replacement, a metal rod in my tibia, and my femur was so brittle it needed a metal plate to reinforce it. But I’m here!”

She was strong enough to resume school in 2014 and now she is a college graduate! Her degree is in early childhood education and she hopes to land a teaching job soon. With all she’s been through, Kennedy will be a wonderful example of strength, patience, and perseverance to a lucky classroom of students.

When Andrew DuBois lines up with his fellow graduates to accept his diploma from The Walker School’s principal, he likely won’t be the tallest of the group. But he doesn’t mind that at all. Andrew is pointed toward a promising future and a little thing like height won’t bring him down.

While the other boys in middle school were hitting puberty and growing, Andrew noticed he was not. Initially doctors told him to be patient. But after a long period with no change, an MRI revealed a tumor pressing on his pituitary gland which caused a deficiency in growth hormones. The tumor was not spreading but the location meant it wasn’t a candidate for surgery or radiation. His treatment began with a hormone supplement to try to bring on puberty, but that made the tumor grow. So Andrew started a regimen of chemotherapy.

The first chemo was very harsh and ineffective. It caused him all kinds of problems including neuropathy in his fingers. After discontinuing that drug, he began taking biweekly doses of another chemo called Avastin which effectively shrunk the tumor. That became his routine through the rest of high school – trips to get chemo every other week.

“I had a pretty good attitude, but I’d be lying if I said I kept positive the whole time,” Andrew said. “The early teenage years were tough. I had played baseball all my life and had to give it up because the other guys grew bigger and stronger and I didn’t. But I began to focus on music and loved being a part of the band and drumline. I finally decided that I wasn’t going to let my height bring me down!”

In the fall, Andrew will be attending Georgia College & State University in Milledgeville where he will major in nursing.

“I spent five years watching what nurses do,” Andrew shared. “I have seen how important they are to the healing process and I think I will be able to relate to patients in a special way with all I’ve been through.”

Maddie Harris uses the line, “The tassel was worth the hassle.” And for her, high school started as a huge hassle. On the day after Thanksgiving during her eighth-grade year, Maddie noticed an odd bruise on her lower leg. It continued to get worse until just days later she couldn’t walk on it. X-rays led to an MRI which revealed a tumor and on December 6th, Maddie was diagnosed with Ewing’s sarcoma.

She had a port placed and began the standard mix of chemotherapy. One of the drugs she had to endure was Doxorubicin – otherwise known as “the red devil.” Maddie had a severe reaction to this drug. Her feet blistered all over and she couldn’t walk on them. This side effect abated and she went on with treatment. Although it was hard on her, Maddie was more concerned with others.

“The toughest part for me was trying to keep my friends calm and reassuring them that I was going to be okay, even when I felt terrible,” Maddie recalled. “They acted scared around me and I wanted them to know that even though I was sick and bald, I was still Maddie.”

Maddie’s treatment would last until the middle of her freshman year at Harrison High School. She didn’t get to go to school until the fourth day and by that time, all of her classmates knew their way around and she kept getting lost in the hallways. But the school and her teachers were very supportive. Some even came to her home to help with lessons.

That was three years ago. Maddie just took her last final and will start her freshman year at Georgia College & State University in the fall – where she plans to arrive on time! She isn’t completely decided on her major, but wants to work with children and is considerting therapy or counseling – which is no surprise considering her life experience and compassion for others.

The Girl who Dances Through Chemo

Imagine having to evacuate for a hurricane just days after you’ve celebrated the birth to your fifth child. To make matters worse, while away from home you notice that your eight-year-old’s stomach is distended and hard. It seems more than we can fathom, but it happened to Derrick and Alana Williams.

After Hurricane Irma moved out last September, the Williams family returned to Savannah. They assumed that the hardness in Nevaeh’s stomach was due to constipation or something similar.

“When we got home, we saw that her stomach had grown a lot from the time we first noticed it,” Alana recalled. “It stuck out so much she looked like she was pregnant. I tried to hold it together for her and her sisters. But I was freaking out!”

Derrick took Nevaeh to the doctor, who immediately sent them to the hospital. After an ultrasound and CT scan, he heard the awful words, “your child has cancer.”

The hardness in their daughter’s stomach was a three-pound tumor. In fact, Nevaeh had several tumors in her abdomen. After a biopsy, the tumor was originally diagnosed as Ewing’s sarcoma. But Alana wasn’t sure. She began researching Ewing’s and nothing seemed to match up to Nevaeh’s symptoms. A second opinion revealed the tumor was actually desmoplastic small round cell tumor (DSRCT) – a cancer so rare that fewer than 200 cases have ever been reported. Worse still, there is no standard treatment available.

Doctors recommended the same aggressive chemotherapy regimen that is prescribed for Ewing’s sarcoma and began right away. This chemo typically causes nausea, mouth sores, and many other difficult side effects. But those haven’t seemed to bother Nevaeh. She hasn’t been sick or hurting in the hospital. In fact, she has danced.

Her mother describes Nevaeh as outgoing, strong, and brave. She is a very perceptive girl and knows exactly what is going on with her cancer and her treatment. She also loves music. She started playing her favorite songs as a way to distract herself after chemo. And like most of us, she couldn’t keep from moving when her favorite songs played. That’s how the dancing started.

“It’s very therapeutic for her,” Alana said. “She can’t help the fact that she is stuck in the hospital, but dancing is a way to block out the bad stuff and try to keep things normal. It is one of the few things she can still do right now.”

Nevaeh’s dancing has attracted attention. She has danced with musicians and Falcons players who have come to visit the hospital. She has also learned to manage the tubing that is attached to her during her hospital stays. She holds the lines in one hand so she doesn’t get caught up in them. Nevaeh often Facetimes with her sisters so they can all dance together.

“We are a very close family. We do everything together,” her mother said. “Her treatment is really the first time the family has been separated, so we are glad she can use her iPad to talk and play with her sisters when they are apart.”

The good news is – her treatment is working. Nevaeh’s tumors have shrunk over 50% since treatment began. Soon she will have a high-risk surgery that circulates chemo into her abdomen to kill cancer cells that cannot be surgically removed. After she recovers from that, her plan includes six weeks of radiation and if everything goes well, Nevaeh will then be free to practice her dance moves wherever she likes with no tubes to hold her back!

Throughout the treatment, her attitude has been nothing short of inspiring. When a reporter asked her about her treatment, the little dancer simply said, “your current situation does not have to be your destination.”

A Nation Behind Me

by Chip Madren

 

On January 28, 2017, some friends and I held a fundraiser we called Hunting, Fishing and Praying for a CURE. This event was one of my proudest moments because I could give back to the community that has helped me for such a long time. Before I begin my story about such a life-changing event, I want to tell you what led up to this. When I was thirteen years-old, I was diagnosed with an aggressive brain tumor called anaplastic metastatic medulloblastoma. The doctors didn’t know what to expect or how long I might live. I am now proud to say that I am cancer free and twenty years-old, thanks to friends and family who have helped me throughout my life. Since my diagnoses, I am the strongest I have ever been, and I’m proud to give back to the community that has long given to me.

Back in September 2016, my brothers’ friends were holding some small fundraisers for Chip’s Nation Pediatric Cancer Foundation, and they raised about $5,000. Their hearts and passion for helping others were truly incredible. We decided to host a new fundraiser called Hunting, Fishing and Praying for a CURE. We invited thirty kids from fifteen different schools to help plan. When the planning began, we expected two hundred people to attend. As time went on, more and more people wanted to attend this momentous event. Two weeks before the event, we had sold five hundred tickets, were sold out and had a waiting list.

Hunting, Fishing and Praying for a CURE was held at Saint Luke’s Church in Dunwoody, Georgia. The church was kind enough to donate its facility for the night. Waffle House catered the dinner, and we had more than two hundred hunting and fishing themed raffle and auction prizes. We decided to donate the money raised to four charities representing care, research, hope and love. Children’s Healthcare of Atlanta took great care of me, CURE Childhood Cancer supports research endeavors, The Outdoor Dream Foundation gave me great hope through my passion for the outdoors, and dogs from Canine Assistants provide much needed love.

The event was hosted by Jaye Watson, a local newscaster and CURE supporter, and David Blanton, a professional hunter with Realtree Outdoors. I also had the opportunity to speak that night and give my message to the audience. I said, “You all gave me your time, money, and support during my fight against cancer, and I want to give back to the community and help somebody else.” I encouraged everyone to do what they could to help these fighting kids. The event ran smoother than anyone could have expected because it was organized completely by a group of teenagers. We raised about $85,000 that night, and after expenses, we were able to give the four organizations $18,000 each!

People may look at me and see a kid in a wheelchair with a really cute service dog and think, “Oh, that poor boy.”

But I am here to tell you – I’m good… No, I’m great. I have a loving family, supportive friends, and a Nation behind me.

My goal is to encourage that Nation to be a driving force in the fight against childhood cancer.