Childhood Cancer Archives - Page 6 of 6

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 sarcoma. But Alana wasn’t sure. She began researching Ewing 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 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.”

Cure In Childhood Cancer

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.

Cure In Childhood Cancer

Because of Holden

We all do things for our children – sometimes those things are little changes in where we live or what we buy. And sometimes those changes are life-altering. Would you ever walk out a job, start a company, and serve food at a hospital because of your child? I’d like to introduce you to a man who did all three… because of Holden.

Holden was diagnosed with a brain tumor in June of 2000 and had surgery at the Scottish Rite campus of Children’s Healthcare of Atlanta. Following the surgery, his father, Mike, struggled with being away from Holden during treatment and made a request of his boss. He asked if he could take Fridays off to be with his son, a request that his boss denied. So Mike walked out of his office and never looked back.

“Having a child with cancer changed my life and encouraged me to do anything it took to spend more quality time with my kids,” he says. “I chose to start a business which would allow me to have every Friday off for two years, as my son, Holden, went through chemo. I could take as much time as I needed to be with him at every MRI and doctor appointment. More importantly, I could take time off to coach my kids ball teams and attend all their school functions. While times were financially tough for many years, it was worth every moment of family time.”

Holden has been cancer-free for fifteen years now and his father’s decision to leave that job turns out to have been the right one. Mike’s company, ETS Solutions, is thriving just like Holden. In fact, it has been so successful that they have looked for ways to give back to the community, particularly partners like CURE who came along side of them during Holden’s treatment.

Mike recalls the early days of diagnosis:

“As we were spending time with him in the hospital, a CURE volunteer came to our room and asked if we wanted some lunch. We were very tired and stressed throughout the course of his surgery, and it could not have come at a better time. Being fed a meal during this time of need, was one of the most heartwarming experiences a parent in the hospital with a child with cancer could ever feel.”

And now, ETS Solutions is a proud sponsor of CURE’s Open Arm meals program where Mike and his team can regularly be found on the Aflac floor serving meals to patients and families who are fighting the same battle that his family fought years ago. All of this, because of Holden.

Open Arms is a tangible way for people to give assistance to families in treatment. CURE serves lunches and dinners on regularly scheduled dates at the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta (Egleston & Scottish Rite campuses) and Memorial Children’s Hospital in Savannah, GA. If you are interested in learning how you can help, please email [email protected].

Cure In Childhood Cancer, Research

Staggering yet Stagnant Innovation

What are the greatest innovations of the last forty years? Going back to our bicentennial – 1976, can you come up with the top scientific, technological, and medical discoveries that have impacted society? I had the opportunity to speak to a middle school class in Decatur, GA last week and posed that very question. Although they’ve only been alive for one decade, hands shot up all over the classroom and I began to field their responses:

“The Internet!”

Correct! There was no internet or social media. We talked to each other.

“Cell phones!”

I mentioned rotary phones but lacked the Pictionary skills to make them understand rotary dialing.

“Mobile devices!”

Another good answer. I explained the huge shoulder boom boxes but since they can store a thousand songs on a device the size of a quarter, it was lost on them.

“Color Television!”

No, we had color tv’s but only three channels with no cable or satellite.

Mouths dropped.

“Space travel!”

Well, a man walked on the moon in 1969 but you are right, there has been a great deal of space innovation since. We’ve even sent a rover to Mars.

“The Gyro Rocketter!”

I suppose so. I’m sorry, I don’t know what that is.

“You couldn’t know, I only invented it just now.”

A shy hand went halfway up nearby. With the others bemoaning how hard life must have been in the paleo-internet age, I called on the young man who tentatively asked:

“I don’t mean to offend you, but did you fear from dinosaurs back then?”

Thus ended the question and answer portion of the presentation.

When you think about it, the innovation of the last forty years has been staggering. Yet in some areas, it remains unbelievably stagnant. While we have made huge leaps of progress in the fight against many forms of cancer, there are still some childhood cancers that have eluded treatment advances altogether. I discovered this fact when my daughter was diagnosed with Ewing’s Sarcoma at the age of twelve. We were given a treatment protocol which I was told would have been nearly identical to what I would have been given had I gotten the same cancer at twelve. I am not quite as old as dinosaurs, but I was twelve in the 70’s and find it unbelievable that during this age of discovery, children are being left behind.

There are various factors contributing to this sad fact. Although incidence rates are increasing, childhood cancers are still classified as rare compared to adult cancers such as lung, breast, and prostate. Funding from the government and large cancer charities lean heavily toward the cancers that affect more people without taking age into consideration. Yet our children are counting on us to do better. Certainly there are good doctors and researchers working hard to uncover safer and more effective treatments, but there is still a long way to go. That is why CURE is so vitally important. We focus our funding on projects aimed at improving outcomes for the 20% of children not surviving today’s methods of treatment. In addition, we fund projects for developing therapies that will preserve a child’s quality of life after treatment.

Click here to see a list of the research projects we are currently funding and join our search for a CURE

Current Research

Cure In Childhood Cancer

Believe in Grace

We all could use a little more Grace in our lives – and by Grace, I mean Grace Bunke. Grace is your typical eighth-grader: braces, curly hair, and a delightful smile. But Grace is exceptional in many ways and one you would spot immediately – her ankle is now her knee!

Don’t believe me? It’s true.

Grace was diagnosed with Osteosarcoma in August of 2014. With her treatment options limited, Grace and her family chose rotationplasty – an innovative surgery that removes the cancerous knee while the ankle is rotated and reattached to the limb. Since a typical amputation would limit her future flexibility, having a knee joint greatly increased the chance that Grace would be able to continue her athletic pursuits after treatment.

Grace is fast!

Before cancer, she ran track and cross-country. With a running prosthetic being built, those days on the track are soon to return. However, for now, she has a new love: swimming. Things can be difficult for a swimmer with half a leg. When she first got back in the pool she only used her full leg, but she gradually taught herself to use both and now there is no stopping her. She said it took a couple of months to really get the hang of it and go fast. Once she mastered the stroke she went on to swim competitively. In fact, she has her sights set on the Paralympics.

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But October brought on a setback. After a routine scan, doctors found tumor growth in her lung that required immediate surgery. While the family prepared for the surgery, they also began to think about what that would mean to Grace’s swimming aspirations. Her mother, Vicki, wrote:

But more important than that, during the course of the weekend, Grace told me that she had designated the Can-Am Open Meet in Miami over the Thanksgiving break as her ‘come-back’ meet. When I gently implied that she may not be entirely ready for this meet, she replied with the following question:

Mom, don’t you believe in me?

Ugh – what a punch-in-the-gut-mom-moment.

Of course, I believe in you Grace, I replied.

And then added:

You have taught me more about believing than anyone I have ever met. And you have shown me that our best life is not our easiest life. Our greatest joy and satisfaction comes not from avoiding hard things but from joyfully embracing them.

The surgery is behind her now. The doctor removed a single lesion/nodule from Grace’s left lung and is confident that she obtained clear margins. And Grace? She’s back in the pool and pointing toward Miami at the end of November. You don’t have to talk to Grace very long to know that she’s driven. Once you meet her, it is easy to believe in Grace. In fact, I would say it would be impossible to spend a few minutes with her and be a doubter.

CURE believes in Grace and can’t wait to hear her race times later this month. We also believe that childhood cancers can be defeated in our lifetime. Join our team by contributing to life-saving research today. Your donation, however large or small, shows that you too believe.

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Cure In Childhood Cancer, Named Funds

He’s Not Here

Moving. Leaving. Exchanging one place for another. Often it is done out of necessity, sometimes done by choice – a new job, new family, or an opportunity to prosper in another place. First comes the decision and then there is the packing. Endless boxes poured over with closets that seemed so small when you lived there, but never seem to have a back wall when you’re forced to clear them out. How many trips to Goodwill could there possibly be in a 2500 square foot house? The answer to that can be a staggering amount.

What do you take and what do you leave?

Most of us have moved at some point. It is a difficult process, to say the least. I have made the request of my family to never make me endure another move. When I go, I just want them to condemn the house and implode the walls around me. It would be easier for all of us that way.

Would you ever leave your child behind?

You laugh at that.

You are ready to close the browser and stop reading because the question seems preposterous. You say there is no possible way you would do that! You would never leave your child and on the face of it, I see your objection to my question. But I met a woman – a loving mother who was forced to do just that. She moved away from her son.

After a five year sickness that turned into a cancer diagnosis and ended in her son’s death at seven years-old, Stephanie’s life took a number of turns. She left Atlanta and moved further north where no one knew her situation, no one had heard of her son, and nobody spoke his name. His name. Creed. It’s not their fault, they couldn’t have known. Some have learned of her boy and will read about him and comment to her. That is a sweet effort that she always appreciates. But he’s not here. He lived two homes ago and often seems a lifetime away.

Everyone handles loss differently. For some, an escape is necessary. To move forward, they have to move away from the place of pain and that’s okay. There is no right way to grieve – no cookie cutter process or recipe to be followed that will mend a broken heart. Some hearts stay broken.

So how do you adapt? How does one go to a new place and leave their child behind?

“Our guest room is a shrine. I tell people they are welcome to stay but I warn them because I don’t want to freak them out when they see all of his stuff and his pictures on the wall,” she said. “And when the house is quiet and I need him, I go and lay down in his bed.”

Unfortunately, Mom’s like Stephanie aren’t alone. Cancer has caused far too many moms to make a choice to stay or move. She keeps Creed’s memory alive by telling his story and decorating his room. But more importantly, she is working with CURE to fund a cure to childhood cancer so that other moms don’t have to leave their babies behind. Join Stephanie today and contribute to The Creedlove Fund.

The Creedlove Fund provides support to patients undergoing treatment for childhood cancer and their families. Your gift, no matter how large or small will help a family in need.

Cure In Childhood Cancer, Uncategorized

Tenacious John vs. the Hurricane

After Hurricane Matthew ripped through the Caribbean and moved toward the east coast of the United States, some residents of coastal Georgia had a decision to make. Should they hunker down and stay put or flee their homes until the storm moved out into the ocean? For most the decision was made clear when Georgia Governor Nathan Deal ordered everyone east of Interstate 95 to evacuate.

Faced with this, what would you do? Would you defy reason, logic, and the law to stay behind, or would you pack whatever you could carry and hit the crowded interstate headed west?

If you are five-year-old Tenacious John, you would lie in bed, snuggle your stuffed angelfish and ride out the storm. He is just that tough.

Unfortunately, despite the Governor’s mandate and the storm headed their way, John was unable to leave. You see, John has neuroblastoma – a childhood cancer that develops from immature nerve cells found in several areas of the body. Fresh off of surgery to remove a tumor on his adrenal gland, John was immobile and relatively unconcerned about the storm outside. In fact, John never even bothered to wake up during the entire hurricane, even when two tornado warnings forced his caregivers to wheel his bed into the hallway.

While the hurricane was raging around them, his mother, Ashley said they could hear the wind and rain, but the building made them feel safe. Some water that leaked in around a few windows was their only exposure to the elements. The entire family stayed together in the hospital, and one of their biggest challenges was keeping John’s two-year-old brother entertained during the ordeal. Ashley is extremely thankful for the dedicated staff at Memorial University Medical Center who stayed with them and other patients who couldn’t leave.

Ironically, weeks before the surgery John decided that the doctors were going to use “wind medicine” to blow out the tumor. Little did he know that the wind would be outside the hospital and not in the operating room.

Although the storm is now gone, John still has a long way to go. He will have more chemotherapy, a stem cell transplant, and radiation before he is through with cancer. Brave and hopeful, nothing can stop the boy who slept through one of the roughest storms in Savannah’s history. John beat the hurricane, and in a little while he will laugh in the face of cancer, too.

See what CURE is doing to ensure more tenacious kids like John can weather their storms.

Cure In Childhood Cancer

Coping with Anger During Treatment of Childhood Cancer

Anger is a normal and expected response to loss or unwanted change in our lives. After the loss of her child, one mother could no longer drive through her neighborhood without being angry at the Christmas decorations that her neighbors had painstakingly put out during the holidays. She could not help but think, “What a waste of time.” “Is that the only thing they have to do or worry about?” Over time she recognized she felt alone. She felt that she was not like everyone else and they did not understand her. Her anger moved to sadness and, at times, depression.

Grief is a tricky and complex process. Everyone recognizes that grief is something we experience when we lose someone close to us; however, grief shows up in many other life circumstances. Grief is the normal response to loss, which can be experienced in the death of a loved one, when we receive a cancer diagnosis, while our child is battling cancer or whenever our life circumstances are threatened.

What does grief look like? Grief can come in stages. At first we may feel shock or denial. We cannot believe this is really happening. Sometimes we may feel the urge to bargain. If I go back to church or make other life changes maybe my circumstances will change. Often we feel angry. Why is this happening to me? It is not fair. I am a good person. It is not unusual to feel angry with God, doctors, neighbors, family members and even strangers. Another stage of grief is sadness and depression. We may feel hopeless, alone and fearful during this stage. The final stage of grief is acceptance. Acceptance does not mean that we approve, like or understand our situation. It simply means we accept that it is our current reality.

Grief can be messy. It does not proceed evenly through the anticipated stages. Sometimes it may skip a stage only to cycle back later. It often feels like one step forward and then two steps back.

When we experience anger as a grief stage it can either be internalized or externalized. Internalized anger is directed inwardly towards ourselves. We feel sadness, guilt, shame and/or depression. Externalized anger is when we are angry at the world. People and things irritate, annoy and frustrate us. When we are dealing with life threatening issues we begin to see life differently. We may change our priorities, let go of trivial concerns, become impatient with gossip, feel frustrated with mundane issues and resent people who do not understand our new priorities.

It is understandable that we feel anger when our child is battling for his or her life and someone else is focused on what feels like trivial concerns. The trick is to manage our anger so we do not make our situation worse. Yelling at or insulting a neighbor or friend who is complaining that their son did not get to play first base may negatively impact future support from that friend and end up making us feel bad about our explosion.

Let’s look at five skills that can help us deal with the natural anger which arises during our battle against cancer.

COPE AHEAD: It is important to recognize that we are going to find ourselves in situations where people are insensitive and/or are focused on issues that pale in comparison to our battle. Coping ahead means we are prepared for these times. You might create a witty line to clue them in to their insensitivity. Or you may be prepared to simply walk away when you start to become irritated.

NAME AND CLAIM YOUR ANGER: Many times it is helpful to simply be aware of and recognize your anger. Once you recognize you are feeling anger, it is helpful to explore why. Once you name and understand your anger, it is easier to normalize it. For example you may say “I am so angry at my sister for ranting about her son’s teacher when my daughter has not been to school for the last month. I am annoyed that she does not think about my situation before she shares. It is insensitive.”

PROBLEM SOLVE: Sometimes managing our anger means speaking up. If someone is insensitive or continues to trigger our anger, we may need to confront them about it. Usually sharing what happened and how it impacted us is all that is needed.

SELF SOOTHE: Take time each day to decrease your distress and your vulnerability to anger by soothing your senses. Listen to relaxing and/or uplifting music, light a candle, wrap up in a warm blanket while drinking your morning coffee, use your favorite lotion, read a devotional, look at pictures of beautiful beaches, or eat a piece of your favorite chocolate.

TALK IT OUT: Vent to friends, family or a counselor. They can listen, understand and help you find ways to cope as you wrestle with the anger stage of grief.