Board of Directors Spotlight: Marsha Moore
Not All Superheroes Wear Red Capes
This past year has made me truly reflect on my career and what I consider a calling: Nursing. I do not consider myself a hero by any stretch of the imagination, as so many people have blessed me. I have had the pleasure of meeting amazing people every single day in a profession I didn’t choose but, instead, chose me. Coping with a pandemic no one could have ever imagined has shown me that I am in the right profession. We have cried together, supported each other, and get back up every day to give selflessly to our patients and families. I feel humbled and honored to be in the right profession at the right time.
My first profession was as a Home Economics teacher, far away from the United States on the small island of Jamaica. After emigrating to the US, I knew I did not want to teach anymore but was unsure what I wanted to become. There was a downturn in the Information Technology field with outsourcing jobs, and since my husband was in IT, we wanted to diversify. I started doing home care as this was one of only a few jobs female immigrants could get quickly that paid decent wages. I fell in love with it, and the families encouraged me to become a nurse. After much thought, I went to nursing school while working as a nursing assistant in the hospital while raising my children. After 15 years and many degrees later, I must say that nursing is my love.
After raising four children and having two grandchildren, my husband and I had a yearning to give back to someone what we had been blessed with. We had talked lightly about adopting in the past but as we got older never thought about it until two beautiful twin girls found us. We were informed of them through my husband’s sister, and we were enamored by them. Unfortunately, no sooner than we started the adoption process, we learned one of the girls was diagnosed with leukemia. Fight as she did, two months after arriving at Levine’s Children’s Hospital, she succumbed to her illness and passed away.
It was during this time while we were at LCH that we met some true superheroes. We met nurses, doctors, physician assistants, nursing assistants, physical therapists, occupational therapists, social workers, child life specialists, etc., who cared for and fought for a little girl they barely knew. Alesha was feisty and was a fighter. She fought with everything she had. It was during this time that we also came to know the folks at CCP. They were so instrumental in providing resources in so many ways. Sometimes, it was gift cards to help with lunch and gas as we spent time at the hospital with Alesha. Sometimes it was a listening ear as we struggled to understand why this sweet girl was going through so much.
As a nurse and a mother, CCP is a God sent to people in their time of sorrows. someone to hold your hand as you take a journey, no one should ever have to travel. Your nursing education goes out the window as you see your child slipping away from you and you have no control. CCP has been and continues to be a superhero in my book. I am forever grateful to have them in my family’s life as we move forward.
There have been so many superheroes on our journey, and we will be forever grateful. In the words of my son, “The essence of a true superhero demonstrates that courage is not the absence of fear, but taking action anyway – even in the middle of a pandemic or extreme grief and loss.”
Superhero Spotlight: Little Brian
Today we celebrate a Superhero, Brian. Brian has been an inspiration from the day he was born overcoming many odds. In March of 2018, Brian was diagnosed with Leukemia and rang the bell on April 14, 2021 after 3 years of treatment.
“Ringing the bell marks a milestone for families, symbolizing all they have been through and overcome. A day they have anticipated since they first heard the word cancer it’s a way to celebrate the end of treatment and start a new chapter of survivorship. The sound can also resonate with families still fighting their battles with cancer, providing hope, knowing that it means another child’s treatment has come to an end. “
-Shannon Brown, CCP Director of Family Programs
Words from Brian’s dad about their journey with childhood cancer:
“I will never forget where I was when the call came. I was in the middle of an all-hands-on-deck corporate meeting. I had just started a new career and I was in St. Louis for a week of training. My wife and son were in Greenville, SC, 652 miles away dealing with what we thought was an infection in my son’s shoulders. My wife, Jessica, had called earlier that day saying the doctor had come in to do some additional tests to see if something else might also be an issue. So there I was in the middle of a 200 person meeting with my phone buzzing. One missed call. Two missed calls. Three. Four. By the fifth I had to stand up and walk out on a Vice President’s speech to answer. And that is when I found out that my seven-year-old boy, Brian, had cancer.
Cancer changes everything. And not gradually. It changes it like a car wreck, tragic and instant. I got an early flight home the next day and went straight to the hospital. That is the first way life changes, the hospital is now home. That is when we met Children’s Cancer Partners (CCP). They practically met us at the room. Everything is a blur in those first days. Too many doctors, too many tests, too many questions, and too few answers. The people with CCP offered help and a friend that would walk with us through this time. We really didn’t know what that would mean at the time but we would learn. We are blessed that we live only a few miles from a wonderful Cancer Clinic and hospital in Greenville, SC but many are not as blessed. CCP made sure that we were reimbursed for the travel to the hospital and to the cancer clinic in the years to follow. With a cancer like Leukemia, the treatment is not counted in days but in years. For years, CCP continued to pay every week without fail as we wore grooves in the highway back and forth.
Cancer changes everything. There is a unique strain that it puts on a family especially with a child. Life gets stretch in painfully ways. Time is consumed with clinic visits and hospital stays. The disease acts as a black hole sucking and distorting everything else in life into its black tentacles. Relationships get tested and thinned. Nerves get wore down as weeks of steroid-induced anger trickle by again and again. Emotions are frayed in a life of innate uncertainty. Children’s Cancer Partners supported our family by paying to allow us to get counseling and therapy throughout the battle. It gave us the support and the comfort to be a family growing together in tragedy not being pulled apart. It was invaluable and Lord only knows where we might be without.
Cancer changes everything. But it doesn’t always change it for the worst. CCP also came alongside our family and partnered with a vision my wife, Jessica had to help others that will sadly have to go down the same path we have trod. After we got done with our first couple of months of intensive treatments which involved many hospital stays, Jessica decided to start putting together bags of supplies for parents of children newly diagnosed with cancer. So we went to the store with a couple hundred dollars and bought supplies and filled some bags and went to the hospital. They thought it was a great idea and within about a month, those bags were gone. So we bought some more. Then those were gone. Wanting to expand the idea, we presented it to Children’s Cancer Partners and they took it and ran. Now Little Brian’s Bags of Blessings are given to every family in NC and SC immediately after they are admitted to the hospital for pediatric cancer. CCP made that happen and now more families can know in those first days of diagnosis that they are not alone and they are loved. We are thankful that while cancer changes everything, Children’s Cancer Partners is never changing in its commitment to support families like mine.”
Thank you for going above the call of duty for children with cancer in the Carolinas
Chairman of Children’s Cancer
Partners of the Carolinas
Board of Directors
The global pandemic has affected every facet of our life. Each day brings more tragedy and sadness, new rules for health safety, more restrictions often without answers. Unfortunately, many of us have experienced personal loss. Now imagine, in the midst of this pandemic, that your child has been diagnosed with cancer.
You’ve stopped work to be a full-time caregiver, dramatically affecting household income. You may be required to drive your child 75+ miles for cancer treatment, 3 or more times a week for many months, and address all the potential side effects related to therapy, sometimes with limited support. Perhaps specialized care is needed in Cancer Centers in New York, Texas or beyond.
These are just some of the circumstances in which our organization, Children’s Cancer Partners, provides invaluable services for these families in need. We are a safety net, overcoming the challenges of distance-to-treatment and limited family resources. With support for treatment travel, lodging, meals, homecare and emergency assistance, we ensure every Carolina child has timely and complete access to treatment, regardless of how often or far they must travel.
The key to our success is in our name – our partners – that help us deliver our mission every single day. Healthcare teams, supporters, grants, and volunteers that help our vision come to life for these brave children.
Today, on March 30 as we celebrate National Doctors’ Day, we would like to extend our personal thanks to some of our most important partners, the physicians caring for these children. Every day, we hear stories of the doctors who go above the call of duty to provide care, comfort, expertise, and hope to our families battling childhood cancer.
The stories of physicians who spend countless hours looking for the last hope clinical trial; who skip their lunch breaks comforting a family; spend their evenings with personal calls to explain a new diagnosis. Their work and dedication are noticed and appreciated not just on Doctors’ Day, but every day.
One day is simply not enough to say thank you for going above the call of duty every day. Nonetheless, on behalf of our children warriors, we thank you.
I invite all readers today to learn more about Children’s Cancer Partners, refer a child, or recognize a health care provider who has been instrumental in childhood cancer treatment by visiting www.childrenscancerpartners.org.
Superhero Spotlight: Johnathan White
These are some of our favorite stories to share and it is the support of everyone that makes this all possible:
My name is Johnathan White. My life was forever changed on July 3, 2019. I was selected to attend camp for a week! I had a physical, got all my things packed and was ready! My mom took me to the meeting place. We said our good byes to loved ones and we were off to camp in King, NC. I was feeling a little sick the next day. The camp staff kept an eye on me. I was still feeling sick. I wasn’t able to hold any food or water down. One of the camp directors called my mom and informed her what was happening. On July 3rd, the camp director took me to the hospital in Winston Salem. When mom got to the hospital, I was in the ER admissions. They took me to get x-rays. When the doctors came in, they told my mom the results look like a tumor and more tests need to be done. After more tests, it was confirmed: Wilms Tumor-Kidney Cancer! My mom was in shock!! The doctors informed my mom that the tumor had destroyed my kidney. The tumor and kidney had to be removed. I had surgery on July 4th.
After surgery, I had to recover, get physical therapy and get set up with a treatment plan. I had to have chemo and radiation treatments. When I was released from Brenner, I came home for a little while. I started chemo/radiation treatments in UNC Chapel Hill. I had a wonderful team of doctors, nurses and aides. Because I have so many allergies, some of the treatments made me sick. I had a few stays in the UNC-Children’s Hospital.
After I finished my chemo/radiation treatments, I was finally able to ring the bell! That was an awesome day. Because of COVID-19, family and friends were not able to attend.
I am feeling and doing better now. I still have to get scans every three months for two years. If my scans are good for these two years, I’ll have them done every year. Fingers crossed!!
My parents have been my biggest supporters!! They have been by my side from day ONE!! Thanks MOM & Dad!!! I LOVE YOU SOOOO MUCH!!!!!
About Children’s Cancer Partners
Every year, over 600 children in the Carolinas are diagnosed with cancer. The impact on a family is heart-overwhelming. The most treatable cancer types may require 3-4 treatment trips per week, often requiring multi-night stays depending on the child’s tolerance for chemo or radiation. Some cancers require more specialized treatments available only in New York, Houston, or beyond for weeks at a time. No one plans or budgets for cancer. This is where Children’s Cancer Partners of the Carolinas (CCP) makes a difference.
Once diagnosed, children are referred to CCP by a hospital social worker. Within 24 hours, we respond and schedule a meeting where we learn about their particular circumstances, challenges and needs. Our support is immediate, as we assist with costs of treatment transportation/lodging/meals and required homecare. For families who are “fortunate” to have in-state treatment, we advance/reimburse mileage costs and lodging and meals away-from-home during treatment.
Many children require more specialized care at national centers in New York, Houston or beyond, and we cover airfares, ground transportation, hotels and meals, regardless how often or far they must travel. Most specialized treatments require stays of a week or more for each administration; a bone marrow transplant requires the child to be hospitalized for 100 days minimum, with the caregiver continuously nearby and available,
The children and family members are invited to our Family Night events where they can connect with others on the same perilous journey; peer support is very important. We support the entire family, especially including siblings. All are welcome at our annual “Holiday from Cancer” Parties in December, and our CAMP VICTORY in June, a residential camp for the entire family conducted on the YMCA Greenville campgrounds in Cleveland, South Carolina.
Our support is comprehensive and includes assistance through the Piedmont United Way Gift-in-Kind Distribution Center, where our volunteer shoppers gather household and personal care items that so rapidly become unaffordable for struggling families. Should extreme financial circumstances arise – utility shut-offs, evictions, auto repossessions or foreclosures, we intercede with relief but also give financial literacy guidance and education to help the family “right-size” their harsh living situation and find sustainability.
Our support is continuous until the child-patient reaches age 21, but also inclusive. Unfortunately, we bid farewell to Superheroes; when this happens, we assist with funeral costs, and arrange grief counseling for surviving family members. Families never leave our attention, and some have become our most loyal volunteers, giving support and solace to others.
Childhood Cancer Road Warriors
Every day, hundreds of our childhood cancer Superheroes are on the road, away from home to get lifesaving treatment. With so few pediatric treatment centers, the average round trip is probably 70-80 miles. For dozens of children, the journey is much greater, since none of our fine Carolina facilities have all the treatments.
One of our teenagers is going to Chicago for the second time next week for radioembolization which is a specialized type of radiation and is minimally-invasive. It’s a good treatment option for someone with liver cancer whose tumors can’t be operated on. They went for the first time in August 2020 and got great results. Radiation is injected directly into the arteries of the liver daily for 3 days. This is one of the only treatment centers in the world that does this highly specialized radiation.
Another family has just returned from a 2 month stay at City of Hope Hospital in Los Angeles, where their daughter took part in a CART clinical trial that is the only known alterative to standard treatments that have failed. We helped them rent a house, transport their car, and with other necessary expenses.
Six CCP families are currently taking their Superheroes to M.D. Anderson Cancer Center in Houston for specialized care, typically staying for 7-10 days at a time. Due to COVID, some prefer to drive despite the 14+ hours it takes.
A family is on their way to Jacksonville for proton therapy only available to children in a handful of places nationwide. They will be there for six weeks. There are two sweet girls in this family and are providing housing, food and transportation It’s a long journey and no where in North or South Carolina is there pediatric proton therapy so we make sure if that’s what the medical team believes is the best treatment we get them there! We are happy to report some of our Proton Therapy children are now off treatment! We love it when the ring the bell and Thank you for helping them get there!
CCP Salutes World Social Work Day
A childhood cancer diagnosis crashes down on the entire family. It blocks out the sun.
The first ray of sunshine parents see is the pediatric oncology social worker who helps them overcome their shock, who guides them with assistance and tools that will aid them on their journey.
We are proud to be a big part of that assistance, and to partner with these extraordinary social work professionals day-in and day-out to ensure children get to treatment, and families get to the other side of childhood cancer’s raging river intact, prepared for all that lies ahead.
When they call us and ask for help, we know they have run out of options, run out of resources, and that a child’s welfare is on the line. Together, we figure it out, and get that child, that family back on the path to recovery.
Sometimes they all with the saddest news of all, and we hear it in their voice, even before the words. And again, we figure out the best things we can do for that family, and the loving memory of their child.
There are so many stories over the last six plus years with the amazing social workers we work with. One story in particular that stands out is when I was helping a child with a complicated cancer diagnosis that required out of state treatment. The social worker and I spent hours on this one case working out details and arrangements for a child and mother. We ran into the evening and weekend working through issues and I was so amazed at the care this social worker had. She is one of the 30 we work with who makes a difference in the over 1340 children in our program! Thank you social workers for referring you children to us and trusting CCP to be a partner to you!
Laura Allen, Executive Director of Children’s Cancer Partners of the Carolinas
Social workers are special. We salute them all year long, but especially during Social Work Appreciation Month
Superhero Spotlight: Clay Patterson
Oakbrook Preparatory senior, Clay Patterson, organized a Kidz in Lids day on February 25, 2021 for his Senior Project, which raised nearly $1,000. For Clay, it was more than just a day he could wear at to school. Children’s Cancer Partners of the Carolinas (CCP) has partnered with Clay and his family since 2019 when he was diagnosed with Acute Myeloid Leukemia (AML). Giving back to CCP was important to Clay.
I chose to give back to Children’s Cancer Partners of the Carolinas because I know how hard a pediatric cancer diagnosis can be on a family both emotionally and financially. I felt like I had the best support staff in the world to battle cancer and it was still the hardest challenge I have ever faced. Families who are battling cancer need an organization who can support them emotionally and also help them with extra expenses along the way. Children’s Cancer Partners of the Carolinas does this right here in the Upstate and needs our support in defeating cancer.
Clay Patterson, Oakbrook Preparatory Senior and CCP Superhero
Clay’s Story
Contributing author: Beth Patterson, Clay’s mom
In July 2019, Clay began to feel like he didn’t have any energy. It was the summer before his Junior year and he was playing multiple sports and working as a lifeguard. We thought he was probably overdoing it. However, over the course of a week he began to have symptoms that he had never experienced before. During varsity basketball practice, he found himself needing to sit down for breaks. He felt like his heart was racing after a normal walk up the stairs. He complained of being lightheaded and short of breath. Finally, one afternoon at swim practice Clay felt like he was swimming in slow motion, being passed by other teammates during warmups. Recognizing that something was not right, his coach pulled him out of the pool for the rest of practice. This was not typical for Clay and we had a gut feeling that something was seriously wrong.
The following morning we saw our pediatrician. After drawing labs and examining Clay, she sent us immediately to the pediatric hematology/oncology floor at Greenville Hospital. The next day Clay was diagnosed with Acute Myeloid Leukemia (AML). Over the next four months Clay received three rounds of chemotherapy treatment, all in-patient at GHS. We also learned that his AML had a genetic variation that put him at high risk. Our Oncologist told us that he would need a bone marrow transplant.
In November 2019 Clay received a haploidentical PBSC transplant at MUSC, using Mom as the donor. His course was complicated but his faith, strength and determination helped him through. Clay was so excited to be able to return to school in the Fall for his Senior year. He bounced right back in, competing on the swim team and being elected Student Body President. In November 2020, Clay’s one-year post transplant bone marrow tests showed that he is over 99.5% donor and negative for any residual disease. This fall he plans to attend USC-Honors College.
Clay’s Legacy
This was Oakbrook’s second Kidz in Lids day. Last spring Oakbrook senior, Sophie, selected Kidz in Lids as her Senior Project as well. Sophie was inspired by Clay, one of her dear friends, when she selected Kidz in Lids to support CCP.
If you would like to give in Clay’s honor, click here.
Kidz in Lids is a simple fundraiser where caring Kidz bring $1 to wear their favorite hat to school. If you’re interested in hosting a Kidz in Lids day at your school or your child or grandchild’s school, contact Kate Morrow at [email protected].
March is Wilms Tumor Awareness Month
The month of March is Kidney Cancer Awareness Month. Wilms tumor is a form of kidney cancer and the most common type of kidney cancer in children. Some genetic factors can make a child more likely to develop Wilms tumor, including:
- a family history or personal history of Beckwith-Wiedemann syndrome (a condition associated with larger-than-normal internal organs)
- WAGR (marked by defects of the iris, kidneys, urinary tract, or genitalia)
- Denys-Drash syndrome (a defect of the genitalia)
(Source: https://kidshealth.org/en/parents/wilms.html)
Most children, however do not show any signs of having cancer and often a parent may discover a firm smooth lump in the child’s abdomen. Children with risk factors should have regular ultrasound screenings.
Treating Wilms tumor can vary from low doses of medicine to surgery and chemotherapy and sometimes may require radiation therapy based on severity. This disease is very treatable and typically does not come back. If a child is cancer-free for at least 2 years after treatment, doctors will be very hopeful for full recover.
Children’s Cancer Partners currently works with 47 children in the Carolinas who have been diagnosed with Wilms tumor. We are privileged to interact with these superheroes and gain inspiration from their strength.
Awareness months or days are the only way a cause can gain any momentum. As we go through this month, we invite you to join us in any way you can through volunteering, sending notes to our superheroes, donations or even sharing this blog. The “cure is for everyone” and so we must work together to get to that goal.
Virtual Game Nights with Optimist International
Thanks to our friends at Optimist International, we now have VIRTUAL family nights! Since December 2020, Optimist International hosts a game night over Zoom for our families. December and January’s games were BINGO! The Optimists shook things up with fun karaoke night full of dancing and singing in February.
Virtual game nights is a special way to involve all of our families. “We are now able to include our children who are actively receiving treatment in the hospital,” states Shannon Brown, Director of Family Programs. This is something we’ve never done before and I’m so glad we have a partnership with Optimist International to be able to make it happen.”
During a world of extra isolation, virtual game nights has been a fun and innovative way to connect with our children. We are looking forward to many more virtual nights!
Board of Directors Spotlight: Marsha Moore
Special words from Marsha:
“I moved to Spartanburg from Rock Hill with my husband, Tom, in 2011. We have two sons, two daughters-in-law, and one grandson.
Shortly after moving here, I became involved in the community through the non-profit world: church (choir), Business and Professional Women, and Women Giving for Spartanburg. Before long, CCP (formerly Children’s Security Blanket) got my attention, and I became a donor. When I joined the board in 2015, I served as secretary, and now am chair of the Development Committee. Over the years, I crocheted many blankets for our children.
When I joined the board, we served approximately 52 children and their families. Now we serve over 1,300 in North and South Carolina. The services that CCP provides for families who have a child diagnosed with cancer are extremely important and very needed. Financial stress is a major issue for our families.
I am grateful, humbled, and honored to be a small part of this amazing organization. CCP is truly making a difference in the lives of children and their families as they travel the difficult journey of cancer.”
Thank you for everything you do for CCP and our children, Marsha!