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The Oncologist, the Patient and CKN — Sharing Knowledge

Writing Toward Wellness, with Sharon Bray

Power of Words

Together with Sharon Bray – teacher and author of two books on writing and health – CKN welcomes you to our new Writing Series where Sharon helps readers tap into the healing power of writing during difficult times.  As Sharon puts it, “Your stories matter. You are your stories. Our stories shape us and act as the lens through which we see the world. It’s through story that we make sense of our lives, reclaim our voices, and learn our words can touch others’ hearts.”  Follow along with this bi-monthly series with Sharon and please send us your stories….they matter to us.

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We Must Consider New Strategies to Deliver Health Care to Childhood Cancer Survivors

GregoryAuneby Gregory Aune, MD, PhD, CKN Editor

 

Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood.  Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families.  Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship.  His goal is simple:  to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.

 


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Comment: A mom’s fight against her child’s lethal brain cancer leads to Mexico

jonathanaginSMALLby Jonathan Agin, Childhood Cancer Advocate, CKN Editor

 

PERSPECTIVE | A mother’s desperate attempt to keep her 12-year-old alive

Recently, there have been several news pieces written about the deadliest pediatric brain tumor, diffuse intrinsic pontine glioma or DIPG for short.  Several articles have specifically been run in the Washington Post with the latest appearing on August 21, 2017.  The piece by Petula Dvorak, title above, shares the story of Melany Knott and her 12-year-old daughter Kaisy.  Kaisy, who lives in a rural area in Maryland, has opted to travel to Monterey Mexico for treatment rather than remain in the Washington Metropolitan area, or any of the other large pediatric facilities stateside within a few hours drive.  Within a twenty-mile radius in the Metro DC area sit two major clinical treatment centers with well-known neuro oncologists that have treated a significant number of children with DIPG.  Children’s National Medical Center (CNMC) and the National Institutes of Health (NIH).  Unfortunately, I am personally familiar with CNMC, NIH and the clinicians and researchers at both institutions as my own daughter Alexis was treated in each facility before she died of DIPG in January 14, 2011.  The clinicians and researchers at both locations are top notch.  In the case of Kaisy’s treatment, despite the proximity of these two clinical options, she will travel thousands of miles away to a foreign country at great expense (noted in the article at $33,000.00 for each round of therapy) to obtain treatment. 

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The Attitudinal Qualities of MBCR

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The MATCH Study: Mindfulness And Tai chi for Cancer Health. This innovative clinical trial conducted by the University of Calgary/Tom Baker Cancer Centre and the Princess Margaret Cancer Centre is now recruiting cancer survivors! As a participant you get to choose which treatment approach you want, or let us assign you to a group if you are equally interested in both. We will measure program effects on psychological, physical and biological outcomes including quality of life, mood, stress, balance, blood pressure, heart rate, immune function and more! Visit www.thematchstudy.ca for more details.

 

 

by Joan Hunt, MSW, RSW and certified teacher of MBSR. Joan is one of the MBCR instructors for the Toronto site of the MATCH study. She taught the first group of MATCH study patients in the program in the Spring of 2017. Below are her reflections on the importance of the attitudes that participants bring to a practice of mindfulness, or any approach to healing, for that matter. Our hope is that these reflections may resonate with cancer survivors and care providers generally and serve as a reminder of the imperative of self-compassion when coping with any challenging life situation.

 

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Cancer Pain at the End of Life

 

by Marjorie McGibbon, RN BScN, Paediatric Oncology Patient Navigator

 

There are many tears in the heart that never reach the eyes.  Author Unknown

 

Four years ago this November 1st, I lost my Dad to cancer.  Mercifully, it was relatively quick (6 weeks from diagnosis to death) and his pain was very well managed.  Losing a parent in no way compares to the death of a child, my children are the light of my life, and without them my world would be dark.  The shadows of darkness can block the world’s light for all of us at different stages of our journeys, but it is sometimes deep within the darkness of grief that we learn most about ourselves and the world around us.  Losing my Dad taught me many things, but it wasn’t until a close friend said to me: “But just think about how comfortable he is now, and, he is cancer free again” that I had my “lightbulb” moment in my grieving.  Dad no longer had cancer, and even better, he no longer felt pain.

 

When I think of how I feel as a parent when one of our children experiences pain, my heart aches. Pain in children can be difficult to assess, and as death approaches, becomes even more complex.  There is a protective phenomenon that washes over us as parents and although we may desire with every ounce of our being to take away or relieve our child’s pain, sometimes we are fearful of the tools and practices required. However, it is with these tools, medications, and practices that we see the beauty of being able to provide peace and comfort to both the child and family as end of life nears.

 

Pain is a common symptom for children throughout their experience with cancer.  However, it tends to become more severe as end of life nears.

 

With end of life comes an increase in symptoms, with one of the most frequently reported ones being pain.  We have many forms and types of medications to choose from in managing end of life cancer pain but opioids continue to be widely used because of the efficacy in pain relief.   Fear of opioid use exists across parents of all stages, with parents being fearful that death may happen sooner, or that the child may be in a sedated state until their death.  The goal is not sedation (although sedation can be a side effect), but to provide excellent symptom control, so that the child and family can enjoy peaceful, quality time together.  Typically doses are slowly increased to reach a controlled state of comfort, with preventative medications given to manage any potential side effects.  If distress continues, the pain management team or local support staff will continue to explore the best combination of medications and practices to achieve comfort for the child.

 

Proactive measures can be taken like the administration of medications to prevent nausea and constipation alongside the opioids.

 

Recent advancements in the palliative care approach of pediatric patients are leading clinicians to work early on in the disease with the child and family to discuss the challenges ahead.  If the goals and wishes of the family are explored when the child is relatively well, the family can be better prepared for the impact that end of life challenges may present.

 

Conversations with healthcare providers help parents and children feel in control and well prepared to manage symptoms such as pain, that happen at end of life.

 

Although we have not solved the mystery of pain entirely, we have learned many lessons in the years of helping children on this journey.  Ultimately, open communication, self-awareness of patients/families, as well as staff, and recognizing that just as it takes an entire village to raise a well child, that same village approach must be taken to support the challenges of pain during life and death of the child.

 

Pain relief is one of the top priorities of pediatric palliative care. The goal of pediatric palliative care is to provide comfort care and symptom management, which can be done alongside cancer-directed treatments.

 


Reference

Snaman, J. M., Baker, J. N., Ehrentraut, J. H., & Anghelescu, D. L. (2016). Pediatric Oncology: Managing Pain at the End of Life. Pediatric Drugs, 18(3), 161–180. https://doi.org/10.1007/s40272-016-0168-2

 


 

 

Marjorie McGibbon obtained her Bachelor of Science in Nursing with Advanced Major from STFX University in 2004.  Having always had a passion for working with pediatric populations, she began her career in the pediatric specialty of Oncology/Hematology & Nephrology at the IWK in Halifax.  After also spending time in the Neonatal Intensive Care Unit at IWK, she moved with her husband to northern BC where her practice involved community pediatrics, public health, general medical surgical, as well as prenatal educator & breastfeeding support roles.  Marjorie is passionate about supporting both families and staff caring for children of all ages with life limiting and life threatening conditions, and has recently become a certified trainer in Education in Palliative and End-Of Life Pediatrics (EPEC-P).  Marjorie is the Pediatric Oncology Patient Navigator for Horizon Health Network NB and resides in Petitcodiac, New Brunswick with her husband & two children.  A true Maritimer at heart, she is happiest playing in the waves of the Atlantic with her family in the summer months, and enjoys hitting the slopes with them when the snow flies!

 

 


 

 

The Financial Impact of Surviving Childhood Cancer

GregoryAuneby Gregory Aune, MD, PhD, CKN Editor

 

Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood.  Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families.  Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship.  His goal is simple:  to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.

 


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