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Supporting Children Through the Cancer Journey

August 2016 Vol 2 No 4
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
University Distinguished Service Professor of Breast Cancer,
Professor of Surgery, Johns Hopkins University School of Medicine
Co-Developer of Work Stride—Managing Cancer at Work
Johns Hopkins Healthcare Solutions

Welcome to our latest edition of CONQUER! Although this issue features pediatric cancer, other articles apply to virtually everyone going through a cancer experience.

It can be very difficult to picture a teen or a young adult being ill, much less with cancer. Read about what their unique issues are, and how they should be supported.

When a child is diagnosed with cancer, parents, grandparents, siblings, and other loved ones are all impacted. Read about how to engage family members in the diagnosis and treatment processes, including the young patient.

This issue of CONQUER includes a patient story about a young mother’s experience with explaining to her little boy that although she had cancer, she wasn’t going to die, as his favorite pets and yard critters had.

Learn about the Medikidz, who are 5 characters in medical comic books for kids who explain, at a children’s educational level, the medical problems they may have. Clever! There is also a children’s book on coping with cancer for you to read about.

I hope no one is in this situation, but the reality is that some of you have a child with glioblastoma. This truly is one of the biggest challenges a family will ever experience. Come away with an understanding of how one family coped.

Although most patients with lung cancer are smokers or had a history of smoking, not everyone diagnosed with lung cancer ever smoked. There is a patient story about a man who was the gold standard of practicing and maintaining excellent health, including being a nonsmoker, yet he was diagnosed with lung cancer. He has a strong message to share about the value and importance of cancer research.

When Breath Becomes Air is a memoir by Dr. Paul Kalanithi that is featured in this issue of CONQUER.

The book is about his personal journey with advanced cancer, and was completed after his death by his dear wife.

For more than a century, the mission of cancer treatment was survival. Today, more and more patients with cancer are becoming long-term survivors, and the goals of treatment need to extend beyond that of being alive after treatment is completed. It means understanding the patient’s life goals and incorporating them into the treatment planning. Fertility preservation may be the best example of that. Oncologists will often have fertility preservation on their radar when seeing and planning to treat a child, teen, or young adult, which must be proactive and conducted before any chemotherapy treatments are underway.

Head and neck cancer is a devastating form of cancer that can impact quality of life in a major way. Swallowing, eating, and even being seen in public can prove to be difficult for some patients. Learn about this form of cancer and how it is managed.

The most common form of children’s cancer is leukemia, which is treated with a bone marrow transplant (BMT). Although expectant mothers can arrange for cord blood to be preserved in case a BMT is needed until the age of 21, it is expensive. Sometimes siblings are a bone marrow match, but not always. A solution to this was created by the nonprofit organization “Be The Match.” Learn about how consumers have supported children they don’t even know by getting tested and having those results banked. If someone needs a BMT and no family match is available, a stranger may be able to help.

Finally, a common side effect of chemotherapy is difficulty eating because food no longer tastes the same. Learn some effective methods for overcoming food-related side effects.

Go get a beverage, find a comfy chair, and start reading!

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