fbpx Skip to main content
All Posts By

Mark Myers

A December to Remember

The bulletin board at CURE typically holds announcements and a letter or two. Tucked between the refrigerator and water cooler in the breakroom, it is rarely seen by visitors to the office. It’s really just for us. But in December, it came alive with pictures, notes, and cards and became a stark reminder of the lives we are touching because of the generosity of our donors.

Along with many sweet holiday wishes, one note says:

“My family dearly thanks you for your help with our utility bill last month. It could have meant less food, waiting for winter jackets, or quite a small Christmas for our family of 6. But you stepped in. You’ve truly blessed us.”

Another family in treatment benefited from our Holiday Angels program and wrote to say:

“Thank you all for looking out for my family this Christmas, because this year was NOT looking like a Christmas for us at all, but because of the CURE program we will have one.”

Tacked between warm letters such as these are pictures of children we met as bald patients who now are healthy and participating in life as a child should. Through the cards from families who have lost their children, we are reminded that our work is still not done; but we’re heartened to know that CURE remains a part of their family’s life and holiday traditions.

In that season of giving, you allowed us to do so much for families distressed by childhood cancer. During the month of December, we served nearly 1000 meals to patients and their families in treatment, including a special Christmas Eve meal at both campuses of Children’s Healthcare of Atlanta. Imagine the impact of a warm meal and a smile to those stuck in the hospital instead of at home for the holidays.

Imagine also being a parent balancing the high cost of treatment with your children’s wish lists. CURE donors stepped up to tip the scales and became Holiday Angels. Throughout Georgia, our donors provided gifts for 101 families whose Christmas or Hanukkah gift giving was unlikely. Between our little cancer fighters and their siblings, 300 children experienced holiday joy with gifts from their lists.

More than 125 families attended amazing holiday parties in Atlanta and Savannah, where children decorated gingerbread houses, made slime, ate snacks, and got to sit on Santa’s lap. Most importantly, they were able to take a break from the worries of treatment and enjoy the merriment of the season. One parent wrote:

“Our sweet girls had so much fun at the holiday party. They enjoyed the day and will remember the fun times. All the princesses and Spider Man were a hit and the girls enjoyed talking to Santa”

None of this would be possible without the generous support of donors like you. As we settle into a new year, we’re heartened to know your support didn’t end in December. You are with us all year long, and from the bottom of our hearts, we are thankful.

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.

A Year-End Reflection

Reflection

It’s what we all do at the end of the year, right? Memories we’ve shared with family and friends from the past year flood our hearts and our minds. We choose the joyous ones and hold them close for a lifetime, and we try desperately to endure the ones less joyous…while praying that the new year will be easier. And, that it will be filled with opportunities for celebrations and positive growth.

Growth is a really beautiful thing! Especially in the world of childhood cancer research.

Reflection + Recognition = Growth

As we all begin to reflect on what was 2018, I wanted to share some of the exciting news surrounding The Carter Martin Fund at CURE Childhood Cancer. The end of December marks halfway though CURE’s current fiscal year. In only 6 short months Carter’s Fund has raised an astounding $87,000!

Reflection + Action = Hope

In November we held the inaugural Piggy Bank Bash in Savannah which was a huge success! For those of you who don’t know the details of Carter’s story, in the final days of his life he asked me to get his piggy bank and said, “Mom, give all of my money to childhood cancer research so no other kid has to suffer like me.” At the Piggy Bank Bash guests were invited to take home individual CURE piggy banks allowing them to serve as a reminder that children with cancer need change….they need change in their treatment options that provide better outcomes and cause fewer life long side effects. Our Savannah team poured their hearts into this event, making certain that no one in the community will want to miss the Piggy Bank Bash next year!

It is with tender hearts that those of us at CURE Childhood Cancer recognize the reality of the many children who were diagnosed in 2018, those who continued to endure treatment, and also the sweet, young lives that we lost over the past year. Our hope lies in the children who were declared disease free, those who are survivors, and most importantly, the ones who are being offered different treatment options through the Precision Medicine Program at the Aflac Cancer Center at Children’s Healthcare of Atlanta. This program is CURE Childhood Cancer’s largest grant to date that envisions personalized, non-toxic and curative cancer therapy for all children. 2018-2019 marks year two of our $4.5 million commitment, which has already produced measurable results since its inception.

Reflection + Hope = A Cure

Reflection… cathartic in seeing how far we’ve come and crucial in making a plan for what we still need to do. Over time that reflection will yield a great reward, knowing that we have made a difference in the lives of children with cancer.

Upon further reflection of what Carter Martin wanted, no more kids suffering, we say let’s continue the fight. It is our greatest honor to fight this fight with you.

Thank you for partnering with us in these efforts and for your generous contributions to The Carter Martin Fund over the past year. Every penny out of your piggy banks counts and we appreciate your continued support of this cause. We wish for YOU and your family a wonderful holiday filled with health and happiness.

Merry Christmas and Happy New Year,

Leigh Ann

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.

A Whole Bunch of E’s

If you attended Lauren’s Run and the CURE Childhood Cancer Annual Picnic, you saw people in bright red shirts marked with a big “E”. In fact, you could hardly keep from stumbling into them because they were everywhere!

The E stands for Ethan, and his team is called Team Ethan Gray. Ethan was a very healthy child until his parents noticed something odd. Just before his eighth birthday, he began showing the characteristic signs of puberty.

“We have a picture of him swimming, and he looked perfectly normal,” relayed his mother, Carrie. “Then just six weeks later, he started sprouting hair, developed body odor, and became hormonal. One afternoon he got frustrated with something and burst out in tears, which absolutely isn’t like him.”

His pediatrician agreed that there was a problem and sent them for further testing that revealed a low-grade glioma brain tumor, located from his optic nerve pathway and growing onto his hypothalamus. The hypothalamus is located deep in the base of the brain, and it is interconnected with many parts of the central nervous system. Its location makes Ethan’s tumor inoperable and because it was pressing on the hypothalamus, it activated early puberty (a.k.a. precocious puberty.)

Ethan has been receiving weekly chemotherapy treatments since November and will continue to receive treatment until February 2019. Initially the chemo was very hard on him. He was incredibly nauseous, and nine weeks into treatment, he had a terrible allergic reaction which caused doctors to switch chemo. His body is handling this new chemotherapy much better. The good news is that Ethan’s latest MRI revealed no new growth in his tumor. Hopefully the tumor will now begin to shrink.

Team Ethan Gray is certainly pulling for him. His team began to form early in his treatment. Ethan has always been a helpful boy. During his initial hospital stay, he and his family saw the great needs of other families in treatment. Together they decided to start the Team Ethan Gray t-shirt campaign and began selling them online. All of the donations received benefit the Patient Emergency Relief Fund at Children’s Healthcare of Atlanta. Thus far, shirt sales have raised close to $10,000!

They also help Ethan. When friends, family, and even strangers wear the shirts and post a picture he can see, it lets Ethan know that people are on his team.

“Ethan is a strong kiddo,” said Carrie. “He has had a very positive outlook. Of course, he has bad days, and on those days, the shirts help to lift his spirits.”

The shirts also came out en masse at the 2018 Lauren’s Run, where the team boasted a whopping sixty members. They weren’t a quiet faction either. Team Ethan Gray had a blast and walked away with the Team Spirit Award. They also raised more than $7000 to further CURE’s mission.

“We adore CURE,” Carrie exclaimed. “We love seeing you and your volunteers in the hospital every time we are there. Ethan wasn’t in a great place at first. He was having trouble accepting what was happening until he met a little girl at a CURE event. That encounter with another patient helped him see that he had to fight. It was a real turning point.”

Ethan loved Lauren’s Run, too. He wanted to walk the 5k, but after about 2 ½ miles, he started hurting from the chemo. One of the side effects of his treatment involves his nervous system. His feet started tingling and hurting which made him stop for a few minutes. But he was determined to finish – and he did!

“He really enjoyed the carnival games, inflatables, and the game truck,” Carrie recalled. “Of course, he thought it was really cool to see all of his red shirts out there, too.”

Ethan has big plans for the future. He wants to start a “Kid Clean-up Club” that will empower kids to help clean up garbage and plastic from parks, roads, and oceans. With the army of supporters he’s already built, don’t be surprised if you see Team Ethan Gray in red shirts cleaning the side of the road near you.

 

 

Lauren’s Run Parking Directions

If you arrive between 7:45am and 8:10am, or 9:30am and 10:00am, you may be impacted due to the 5K or 2K races. 

 

Westbound on I-285 from I-85

Take I-285 North/West to Exit 28 (Peachtree-Dunwoody Road) and turn right.  Proceed to the first traffic light and turn left into the Concourse Office Park. Follow signs to parking decks 1 and 4.

 

Southbound on GA 400

Take GA 400 South and exit at Hammond Drive.  Turn left off the exit ramp onto Hammond Drive.  Go to 2nd traffic light and turn right into Concourse Office Park (adjacent to Kindercare).  Take 1st right and park in parking deck for Buildings 5 and 6.

 

Northbound on GA 400

Take GA-400 North to the Glenridge Connector (Exit 4A). Turn right at the end of the ramp onto Glenridge Connector. Proceed to the second traffic light, and turn left onto Peachtree-Dunwoody Road. Proceed north on Peachtree Dunwoody Road to the 6th traffic light (2nd traffic light after going under I-285bridge) into Concourse Office Park.  Follow the signs to parking decks 1 and 4.

 

Eastbound on I-285 from I-75

Take I-285 North/East to Exit 26 (Glenridge Drive). Turn left at the end of the ramp onto Glenridge Drive. Proceed to the 4th traffic light and turn right on Hammond Drive.  Continue to the 4th traffic light and turn right into Concourse Office Park (adjacent to Kindercare). Take the 1st right and park in parking deck for Buildings 5 and 6.

 

 

X