September is Childhood Cancer Awareness Month
New Year Outlook: Another Challenging Year Ahead For Childhood Cancer
Cancer will Remain the Leading Disease Killer of Carolina Children in 2022
By Mark Jackson Last updated Dec 16, 2021
SPARTANBURG, SC (December 15, 2021) — The new year will be different, but still very challenging for Carolina families with children battling cancer, according to Children’s Cancer Partners of the Carolinas (CCP), the two-states-wide safety net organization that gets children to treatment. Based on National Cancer Institute data, CCP projects an additional 600 or more North and South Carolina children will be diagnosed, and the organization’s own caseload of families needing help with treatment access and aftercare will swell to 2,000 or more.
There are only ten childhood cancer treatment centers across the Carolinas. Travel costs will be a continuing burden, especially since so many Carolina children are referred for specialized care in New York, Houston or beyond. CCP provides those families with lifesaving assistance in the form of travel, lodging, meals away from home, and emergency help.
Cancer will Remain the Leading Disease Killer of Carolina Children in 2022…
Continue reading “New Year Outlook: Another Challenging Year Ahead For Childhood Cancer”Love Foundation donation honors Tom and Lucy Russell’s 58-year legacy of caring for children
Ashley Dill Herald-Journal
Published Nov 23, 2021
Tom and Lucy Russell have created a legacy of love and giving to children diagnosed with cancer in the Carolinas.
The couple founded the Children’s Cancer Partners of the Carolinas about 20 years ago.
Earlier this month they were surprised at a reception in their honor to present The Lucy and Tom Russell Urgent Needs Fund which was kickstarted by their friends Catherine and Anthony Vitale, who presented them with a donation of $150,000 on behalf of the C.W. & Dorothy R. Love Foundation.
“I’ve been friends with Tom and Lucy for over 30 years and in that time I’ve seen how lovingly they care for others, especially children.” Catherine Vitale said. “I can’t imagine how devastating it would be to learn that my child had cancer. Just having Tom and Lucy and all those at The Children’s Cancer Partners supporting your family as you battle cancer together is priceless. I’m so pleased that The Love Foundation can help start this urgent care fund in their honor.”
According to executive director Laura Allen, this will be a permanent fund which the foundation will continue to grow by reaching out to the community through various fundraising events.
Children’s Cancer Partners focuses on treatment access which means they help with transportation, lodging, and meals while away from home. This can also include critical homecare needs, financial help, and help with final arrangements if the child ‘earns their angel wings’ as Tom says.
How it all began
Lucy and Tom have always known giving back to children and investing in their lives would play a pivotal role in their marriage and family. The two met on a blind date set up by Lucy’s college roommate at Limestone College.
Continue reading “Love Foundation donation honors Tom and Lucy Russell’s 58-year legacy of caring for children”Do-it-Yourself (DIY) Fundraisers for Q3
We are so grateful for the thoughtfulness of the Carolina community. We have been the recipient of so much generosity in the last few months.
Whatta Wash Car Wash Haunted Wash
Throughout the month of October, Whatta Wash Car Wash on Highway 14 in Greer hosted a haunted car wash every Friday and Saturday night. Thank you for selecting us as your charity of choice and donating!
United Way
Thanks to all the organizations and individuals who have provided wish list items during United Way of Florence’s Day of Caring. We are especially grateful to the United Way of The Piedmont and the local Florence businesses through the United Way of Florence.
Greer Centennial Lions Club
We are honored to be a recipient of the club’s polar plunge!
Bristol Myer Squibb in Greenville
Their Greenville team generously donated items that will be given to our families.
Terrier Touchdown
Thank you Wofford Athletics and Ingles for selecting us to be this year’s recipient!
Front Yard Yoga Family Event
Best friend of one of our families, Liz, held a yoga family event in the front yard of her Charlotte home. The event raised over $1,000 in honor of her best friend’s child who we lost shortly after the event.
Burn Boot Camp
Dr. Niccie and Dr. Jenn of Progressive Mobility + Chiropractic organized a competition at the Burn Boot Camp located at Drayton Mills in Spartanburg, SC. Thank you for your continuous support!
Gilbert High School Girls Tennis Team
The team raised $700 and numerous board games that will be so much fun to play with at Camp Victory and Camp Rachel in 2022. Thank you for your caring hearts, ladies!!
Blankets
Some of our lovely friends from Columbia, SC dropped off 12 full bags of blankets, hats, and scarves. We are in need of blankets! If you would like to donate, please mail them to our Spartanburg office or schedule a drop off time.
2021 Holiday Surprise
The holiday season is always special for us at Children’s Cancer Partners. We typically host a “Christmas Spectacular” in Spartanburg, SC and Raleigh, NC. There, families have the chance to visit Santa, take a horse carriage ride, have their faces painted, get a balloon animal, have lunch, and enjoy being around their family and others who are on a similar journey. It’s not surprise that COVID-19 put our “Christmas Spectacular” to a halt for not just one year, but TWO!! For the safety of our immunocompromised children, we have made the tough decision to postpone until December of 2022.
Last year we sent families a holiday surprise. The surprise consisted of a gingerbread house that our children and their families could decorate together at their home or even at the hospital. The surprise continued with a check to help our families have a joyous holiday season. We plan to do the same this year. You can see the impact from the 2020 holiday season below. Please consider giving so we can continue to bring love, support, and care to our families. Help a child’s holiday wish come true by clicking here.
Volunteer Spotlight: Gail Lux
Children’s Cancer Partners is proud to spotlight Gail Lux! New to Spartanburg and enjoying her new retired lifestyle, Gail enjoys giving back by supporting our families on their childhood cancer journey. With decades of experience as a nurse practitioner in pediatric and hospice settings, Gail has been a wonderful addition to our volunteer corps! A true asset!
“I have enjoyed getting to volunteer with Children’s Cancer Partners and using my personal passions and professional experiences to give back,” said Gail.
Specifically, Gail has been instrumental with working with our schools who have been impacted by childhood cancer to help enlist them as an official Kidz in Lids school. With her background, she has been perfect in this role of helping our school leaders understand the impact childhood cancer has on a child and their family. Kidz in Lids mobilizes students to show concern for other local youth who battling childhood cancer by bringing a dollar to school, and get to wear their favorite hat throughout the school day. Thanks to Gail, Kidz in Lids continues to grow across the Carolinas every day! To get involved in Kidz in Lids, or other volunteer please contact program director Kate Morrow at [email protected].
Superhero Spotlight: Eva
Eva is a fun loving now four year old who was diagnosed with with Embryonal Rhabdomyosarcoma on April 28, 2020 at the age of three. Eva and her mom traveled nearly 1,000 miles to Boston to receive radiation treatment for six weeks. Eva continues chemotherapy treatments at UNC Chapel Hill, an hour and a half from their home.
Childhood rhabdomyosarcoma is a disease in which cancer cells form in muscle tissue (National Cancer Institute). In Eva’s case, she developed tumors in her nasal cavities which led to the diagnosis of embryonal, the type that occurs most often in the head and neck area or in the genital or urinary organs, but can occur any where in the body (National Cancer Institute).
While Eva and her mom were in Boston, Eva’s 12 year-old sister and dad stayed home in North Carolina. Eva’s sister stayed with their grandparents during the weekdays so their dad could work during the week. “We greatly appreciate the monetary support, it eased our minds a lot. We were able process being 12 hours away from home in Boston for over 2 months,” states Eva’s mom, Patience. CCP handled lodging, travel, and meals for Eva and her mom during their stay so they didn’t have to worry about it. This allowed for Eva’s dad to continue to work since most of those tasks are time consuming.
After a scan in September and a brief thought of reoccurrence, Eva is set to have her port removed on December 1, 2021.
Laura Allen awarded Order of the Palmetto
Governor surprises Children’s Cancer Advocate Laura Allen with Order of the Palmetto
SOUTH CAROLINA (September 23, 2021) – During a press conference at the Statehouse yesterday, after proclaiming September as Childhood Cancer Awareness Month, Governor Henry McMaster surprised Laura Allen of Spartanburg by presenting her with the Order of the Palmetto, the state’s highest civilian honor.
The Order of the Palmetto is awarded to citizens for extraordinary lifetime service and achievements of national or statewide significance. Allen, a fully devoted South Carolinian, has served on numerous boards across in South Carolina. Known for her dedication to childhood cancer and building the multi-state Children’s Cancer Partners organization, and her involvement in the community, Allen was nominated by elected officials and community leaders.
“Laura has brought an impressive record of public service to South Carolina, where she took up the lifesaving battle against the #1 disease killer of our Carolina children,” said Rep. Max Hyde in his letter of nomination. “She has transformed a precious little “kitchen table charity” serving just one county into a true national model for childhood cancer patients and family support.”
Children’s Cancer Partners of the Carolinas provided support to young children across North and South Carolina battling cancer. Since joining the organization in late 2014, Allen has grown CCP from helping a small handful of patients to over 1,700 this year alone. Because of Allen’s efforts, CCP has become widely admired as a national model for childhood cancer patients and family support.
Dr. Ki Young Chung, Oncologist with Prisma-Greenville and CCP Board Chair, said that Allen fully embodies the organization’s mission through building trusting relationships with pediatric cancer treatment centers, families, staff, and community members.
“Laura works tirelessly to improve and sustain the extraordinary safety net that CCP provides to Carolina children and families in need,” Young said. “Our state is envied by so many others for having such a unique resource – one that responds immediately, comprehensively, and continuously to the needs of so many brave children.”
Since joining (then) Children’s Security Blanket in 2015 when it served just Spartanburg County with a budget of $70,000, Allen has engaged donors and expanded across all of South and North Carolina, today helping over 1,500 children get to lifesaving treatment with a a budget of over $2.6 million. The expanded organization, Children’s Cancer Partners, receives 30-40 referrals monthly from pediatric cancer treatment centers, from amongst the estimated 600 Carolina children diagnosed yearly. The organization provides treatment access transportation, lodging, meals, homecare, emergency and end-of-life support.
After accepting the Award, Allen was presented with bouquets totaling 75 roses – symbolic of the 75 or more Carolina children who will lose their battle with cancer this year.
CCP Board Member Glenn Cash of Greenville summed up the challenges of childhood cancer with a simple set of numbers – the fingers of one hand.
· Cancer is the #1 disease killer of Carolina children
· Only 2 institutions in South Carolina treat children – MUSC and Prisma Health
· Rural and poor children are at 3 times greater risk for mis-diagnosis, incomplete treatment, relapse or death
· Only 4% of all cancer research dollars are directed at pediatric cancer
· One in 5 children diagnosed will not survive
Overwhelmed by the surprise presentation, Allen thanked the Governor for his efforts to raise awareness of childhood cancer, and gladly accepted the award “on behalf of all the children still in need our help.”
Children’s Cancer Partners of the Carolinas is headquartered in Spartanburg where it was started as an all-volunteer project 20 years ago, and has a North Carolina field office in Durham. For more information, please visit www.childrenscancerpartners.org.
Lymphoma Awareness Day
Childhood lymphoma awareness is also included in September. Children’s Cancer Partners currently serves 25 children and families across the Carolinas with a lymphoma diagnosis.
Lymphomas are cancers that develop in the lymph system and are divided into subcategories based on the type of cell type that is affected. As a result, they are classified as either non-Hodgkin’s (NHL) or Hodgkin’s. Typically, a diagnosis will happen in a child 10 years or older and is very unusual in children under 3 years of age. Symptoms for a lymphoma diagnosis can include:
- swollen lymph node, especially in the neck, armpit or groin (Hodgkin’s disease usually presents with enlarged lymph nodes)
- swelling of the face
- abdominal pain or swelling
- weakness, tiredness
- sweating, especially at night
- unexplained fever
- unexplained weight loss
- shortness of breath, breathing difficulties, occasional cough, high-pitched breathing sounds
- difficulty in swallowing
Treatment for either non-Hodgkin’s or Hodgkin’s lymphoma depend on the stage of the cancer among other factors and can range from chemotherapy to a possible transplant. Most importantly are the high cure rates both lymphomas have with NHL at 60% and Hodgkin’s with a 90-95% cure rate.
We at Children’s Cancer Partners are privileged to interact with all these superheroes and gain inspiration from their strength. Thank you to all our supporters. Any way you contribute, whether it is through volunteering or a physical or monetary donation it truly makes a different and continues to aid in the support of these superheroes and their families.
An urgent message for all CCP Families, from Dr. Jaqui Jones
Now that a COVID-19 vaccine has received FULL Food & Drug Administration approval, we truly can help end the pandemic. But there has been concern, especially among minorities, that the vaccine is not safe.
Can we trust it? How was it developed so quickly? Should you get it? Are you going to get it? Jaqui Jones, MD of PRISMA Health addressed these concerns and offered the following advice.
As a minority, should you be skeptical of the COVID-19 vaccine?
“There is no reason to be skeptical of this vaccine,” said Dr. Jones. “Large groups of minority doctors and other healthcare professionals are constantly communicating with each other. We are having a lot of conversations and sharing data about the research around the COVID-19 virus and vaccine. Sharing what we know with each other, to share it with you.”
Dr. Jones said she understands the skepticism among minority communities, because of clinical experiments that occurred in the past – specifically, the Tuskegee experiments. “What happened with the Tuskegee trials is not the same thing as presenting a vaccine to protect us from COVID-19. The tragedy in the Tuskegee experiments was they discovered earlier on that there was a treatment, but they withheld that treatment to observe a disease process. Some patients have told me they think people were injected with the disease, but that is not what happened. From that tragedy came review committees and boards that are now responsible for making sure safety guidelines are in place, and making sure we inform people about the studies they are participating in.”
Dr. Jones said if you’re skeptical that means you need more information. “Having questions or concerns is fair. We can answer your questions so that you feel better about getting the vaccine.”
Is this vaccine too new to be trusted?
“Decades of finance, research and studies have gotten us to this moment,” said Dr. Jones. “We have used technology and information to our advantage against COVID-19 to develop this vaccine. The vaccine was not rushed in the name of the economy or for any other reason. It is backed by good science with over 30 years of research specific to this type of vaccine technology (mRNA). It’s not new. There has also been minority representation up and down the entire scientific spectrum throughout the journey to this vaccine.”
Do you recommend minorities receive the COVID-19 vaccine?
Dr. Jones, who has received the vaccine herself, said the short answer to this question is yes. “In minority communities, we have high comorbidities. We came to the door at a deficit – with higher rates of diabetes, hypertension, morbid obesity, COPD, emphysema, smoking and alcohol use. We’ve been dealing with a lack of access to healthy food and safe places to exercise. All those things existed before COVID. And now more of us are dying at a higher rate from the virus.”
Long-term effects of COVID also continue for many people – shortness of breath, hair loss, memory loss, chronic cough, fatigue, and loss of taste and smell. “This can be life altering and disruptive,” said Dr. Jones. The continuing effects can impact whether people can do their jobs, they affect dynamics between family members, and they affect the daily enjoyment of life.
COVID-19 is wide and broad in the symptoms and outcomes. This vaccine offers a way to prevent death, disease and potential long-term effects from the virus. When the opportunity presents itself for you to receive the vaccine, do the thing that will allow you to go on and live a healthy life. As soon as you can, get your vaccine,” said Dr. Jones.
From all of us at CCP, please protect your children, yourself, your community. Get vaccinated.
September is Childhood Cancer Awareness Month
September marks Childhood Cancer Awareness Month. As to be expected this month is an important one for Children’s Cancer Partners of the Carolinas to recognize. Our passion is deep in helping families overcome distance and cost barriers, so their child’s care is timely and complete. To commemorate this month we highlighted several “Behind the Cape” families in August because “when a child gets cancer, so does the family.” Why is there a Childhood Cancer Awareness month? Because…
- Cancer is the #1 disease killer of children.
- It attacks over 600 Carolina kids every year.
- 1 in 5 children won’t survive.
- Those in rural or poor families face 3 times greater risks for misdiagnosis, relapse or death.
We invite you this month to consider a way you can get involved to help us in building more awareness. Volunteering, sending notes to our superheroes, donations or even sharing this blog are several ways. The “cure is for everyone” and so we must work together to get to that goal.