Tips from The National Children’s Cancer Society: Keeping Siblings Happy and Engaged During Tough Times

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This is a guest post written by The National Children’s Cancer Society (NCCS). The NCCS is a not-for-profit organization providing support to families making their way through the daunting world of childhood cancer and survivorship.

When a family is going through a tough time, such as when a child is sick, a large amount of attention is focused on that child. This family focus can leave their healthy siblings feeling angry, guilty, isolated, sad and anxious.

However, research from the Journal of Pediatric Oncology reveals that when children possess a positive personal outlook on life, they’re likely to remain optimistic and have an easier time coping. Parents can help build this positivity through hands-on activities that give their healthy children a chance to process feelings and connect with their families during an emotional time.

With more than 30 years of experience serving nearly 43,000 children facing childhood cancer, the NCCS would like to share age-specific tips and activities to help keep healthy siblings happy and engaged during trying times. While these tips and activities may be designed for families with children that have cancer, many can be applied to families facing other hardships such as a death in the family or parental illness.

Birth to 3 years old:

  • Technology can help you feel connected while apart, use Facetime or record stories and lullabies to soothe the baby while he/she is with a babysitter or in a new environment.
  • Since transitions can take some time, it’s best not to attempt toilet training or major developmental tasks until there is a consistent routine in place.
  • Suggested activity:
    • Play with playdough – Kneading dough is an opportunity to talk while playing, work out tensions and have fun with the baby. Scented playdough can enhance relaxation.

3-5 years old:

  • Even if toddlers revert to behaviors they have grown out of, including having accidents or throwing tantrums, continue implementing standards and discipline as before to provide a sense of security and routine.
  • Give concise explanations of what their sibling or family member is going through to allow them to feel informed and connected to what’s going on.
  • Suggested activity:
    • Pop cancer bubbles – Have children blow bubbles and pretend to be a chemo shark or radiation monster who pops bubbles to kill cancer cells. This will give them relief while developing a small understanding of treatments.

6-12 years old:

  • If possible, let children decide for themselves who will be helping care for them when parents are traveling or absent overnight.
  • Explain that all feelings experienced are okay and reassure them that even their tough feelings are alright too.
  • Suggested activity:
    • Make colorful paper chains – Help children write feeling words on strips of construction paper and discuss what they mean, such as love, life, hope and courage. Let kids decide what order they want their strips in and where they want to hang their finished product.

13-18 years old:

  • Arrange a tour of the hospital or clinic with their brother/sister and encourage them to ask questions of the medical team.
  • Give teens abundant permission to talk about themselves, as they’re probably receiving a lot of questions about their siblings.
  • Suggested activity:
    • Trade something special – When away or busy, trade something personal or special with each other. This will help teens feel supported and connected to their family members through hard times.

About The National Children’s Cancer Society (NCCS)

The National Children’s Cancer Society (NCCS), headquartered in St. Louis, Missouri, is a not-for-profit organization providing support to families making their way through the daunting world of childhood cancer and survivorship. With over 30 years of experience serving nearly 43,000 children, the NCCS is able to take a “no matter what” approach to help families stay strong, stay positive and stay together. The NCCS has been recognized as a Better Business Bureau Accredited Charity and earned a GuideStar Platinum Seal of Transparency. For more information call 314-241-1600, visit theNCCS.org, or on Facebook and Twitter.

 

Mesothelioma in Children: Childhood Cancer Awareness Month

Mesothelioma in Children: Childhood Cancer Awareness Month

Mesothelioma.net is a comprehensive source for information on mesothelioma.

September is Childhood Cancer Awareness Month and the facts are that just under 16,000 children and young adults are diagnosed with some type of cancer each year, and about a quarter of them do not recover. Mesothelioma is a very malignant, but rare cancer in adults, and it occurs even less often in children. This is generally because mesothelioma can take decades to fully develop and cause symptoms.

Causes of Mesothelioma in Young People

Asbestos exposure is almost always the root cause behind cases of mesothelioma. When adults are diagnosed with the disease, it’s usually because they had some exposure to it at an earlier point in their lives. Along with direct exposure, it’s also possible for families of asbestos-exposed workers to have secondhand exposure. This can occur when the worker comes home and has asbestos fibers on their clothes or in their hair. However, with children, it seems unlikely that asbestos exposure is the direct cause of mesothelioma. A study of 80 childhood mesothelioma cases revealed that only two children had previous asbestos exposure. Inhaled asbestos fibers typically do not cause any damage until many years down the road. Instead, researchers have found preliminary evidence that radiation exposure could be a risk factor in childhood mesothelioma cases. Other theories include the BAP1 gene and isoniazid exposure at the fetal stage.

Symptoms of Children with Mesothelioma

Some of the same symptoms that adults get with mesothelioma are also present in children. Appetite loss, weight loss, chest pain, difficulty breathing and fever are all typical symptoms. Unfortunately, these symptoms can easily represent another condition, which is one of the reasons why mesothelioma is often not diagnosed until it’s reached a critical stage. Such a diagnosis is less likely with children as it’s an even rarer disease in that age group.

Treatment of Children with Mesothelioma

Similar treatments are used for children with mesothelioma as for adults. Radiation and chemotherapy are the most common. Surgery can be more difficult on younger children especially. In cases of metastasized cancer, surgery is even less likely to be an option. Treatment is also just as difficult for children as for adults. In a review of seven childhood cases, only two of the children made it past five years after the initial diagnosis. The other cases saw no improvement after radiation and surgery. Chemotherapy allowed a few cases to stay in remission for over five years.

Mesothelioma is an appalling disease and it’s tragic for anyone to be diagnosed with it, much less a child. Research on the rare diagnosis continues to improve in hopes that future cases will be much better understood.

 

Giving Back: Spotlight on Sara’s Smiles Foundation

Last spring I had the opportunity to meet Jen Burke, the founder of Sara’s Smiles Foundation at the CLC Conference. She was full of positive energy and compassion to help children fighting and surviving cancer.

 

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Sara’s Smiles Foundation, a designated 501(c)(3) organization, was created by the family of 5 year-old Sara Burke to carry on her memory, spirit, and legacy of hope, determination, and cheer. Sara was a vibrant, energetic, little girl who loved arts and crafts, mac and cheese, music, her Big Wheel, and her big brother and big sister.

Upon being diagnosed with a malignant brain tumor, Sara and her mother lived at the Children’s Hospital of Philadelphia for seven months. During that time, Sara underwent multiple surgeries, chemotherapy treatments, stem cell transplants, and therapies of all sorts. Despite her difficult, adverse circumstances Sara battled her disease with fierce determination and an unwavering positive attitude, living every moment to the fullest. Although physically isolated, she was able to harness the power of love from her family, friends, and community. This energy filled her heart, brightened her outlook, and strengthened her resolve to fight.

Tragically, on May 12, 2008, Sara lost her courageous battle with cancer. The many, many happy memories that Sara experienced in the hospital are the primary inspiration behind Sara’s Smiles. Our mission is to extend a loving hand in helping to create a warmer, more personal, more empowered experience for children who are struggling with cancer by providing a variety of resources to entertain, comfort, and educate. The three major facets of Sara’s Smiles are our website, Inspiration Kits, and Inspiration Stations. All three are designed to encourage a more positive experience for children and their families.

Our Website:

Our website, www.saras-smiles.org, is designed for both the child diagnosed with cancer as well as his/her family and friends. The website provides information about our Inspiration Kits, Inspiration Stations, and many valuable resources. A comprehensive, user-friendly list of organizations that support and advocate for kids with cancer as well as websites and apps for games, arts and crafts, stress management, and pain relief are also featured on our site.

Our Inspiration Kits:
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Sara’s Smiles Inspiration Kits help cultivate a more positive environment and frame of mind for children who are fighting and surviving cancer. Each Inspiration Kit is designed to be durable, portable, practical, and fun. Our kits contain a sampling of the resources found on our website- items that can help families stay organized, connect with others, and explore creative ways to encourage smiles. Whether in the hospital or at home, we believe that engaging children not only brightens their spirits, but empowers them as well. Sara’s Smiles donates Inspiration Kits to pediatric cancer patients in the many hospitals with whom we are partnered and also upon request free of charge. Kits can be ordered by phone or our website.

Our Inspiration Stations:

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Sara’s Smiles Inspiration Stations are where clouds are lifted and joy is inspired via the creation of bright, beautiful, Inspiration Cards. Inspiration Stations are easy to set up and can be hosted by anyone, anywhere such as at schools, parties, shopping centers, etc. Volunteers hosting Inspiration Stations encourage people to share colorful, uplifting, and positive words, phrases, quotes, and pictures on cloud-shaped Inspiration Cards. The cards, crammed with positive “graffiti,” offer an extra measure of love and support to the patients and families who receive them. The Inspiration Cards can also be used to add a spot of color to the walls of a child’s room. They act as a constant reminder of the strength that lies within each child and the unbroken, loving connection to a community that cares about them. Inspiration Cards are included in our kits. They can also be delivered as a surprise package of love and cheer to a child diagnosed with cancer by family and/or friends. More information on how to host an Inspiration Station or to request the delivery of Inspiration Cards can be found on our website, www.saras-smiles.org.

Click here to learn more about Sara’s Smiles Foundation and how you can get involved or make a donation. Be sure to follow their page on Facebook too.