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The Oncologist, the Patient and CKN — Sharing Knowledge

Childhood ALL: Increased Survival Leads to a Greater Emphasis on Preserving Neurocognitive Function

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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Breast Reconstruction: Know Your Options and Decide What’s Best for You

by Courtney Floyd, PRMA Plastic Surgery

Breast reconstruction helps many women feel whole again after breast cancer. Thanks to a 1998 Federal Mandate it is covered by insurance.

Unfortunately, many breast cancer patients are not offered all options for breast reconstruction after mastectomy or lumpectomy.

It is important women know they have several reconstructive options available today. These range from implants to “flap” techniques which use the patient’s own tissue to recreate a natural, warm, soft breast.

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MATCH Study Testimonials

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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 Mihaela Dirlea, MSW, RSW

 

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New Biomarker Predicts Late Neurocognitive Deficits in Adult Survivors of Childhood Leukemia

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.

 


Continue reading

Novel subgroups for clinical classification & outcome prediction in childhood medulloblastoma

by Edward C Schwalbe, Janet C Lindsey, Sirintra Nakjang, Stephen Crosier, Amanda J Smith, Debbie Hicks, Gholamreza Rafiee, Rebecca M Hill, Alice Iliasova, Thomas Stone, Barry Pizer, Antony Michalski, Abhijit Joshi, Stephen B Wharton, Thomas S Jacques, Simon Bailey, Daniel Williamson, Steven C Clifford.

 

Originally published in The Lancet Oncology, May 22nd 2017

 

Medulloblastoma, the most common CNS tumor of childhood, is the leading cause of cancer deaths in young people. What was once thought of as a single disease is, since an International consensus meeting in 2012, now recognized as four distinct molecular entities (WNT, SHH, Grp3, Grp4), each defined by differing disease features and outcomes. However, the studies that defined this consensus were based on small cohorts of tumors, and were performed using low-resolution approaches.

 

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Managing Your Child’s Pain from Cancer Procedures

 

 

Children with cancer often need many invasive medical procedures. These procedures include lumbar punctures (a needle in the spine), bone marrow aspirations (needle in bone) and biopsies (surgery to remove part of the cancer to find out more information).  Sadly, many children find these procedures cause more pain than the cancer itself.  On top of the physical pain caused by procedures, children with cancer can also have distress and anxiety about getting the procedures done.

The good news is that the pain and distress can be managed by using medications and/or psychological and physical strategies.

Lumbar punctures and bone marrow aspirations may be performed under local anesthesia (medicine to numb the area to stop the pain) and/or sedation (medicine to help the person feel calm and sleepy).  Following the procedure, your child’s doctor may recommend oral over-the-counter medicines or prescribe an opioid for pain management.   It is important for parents to discuss these strategies with their healthcare team to determine what’s best for their child.

Dawn Norman approaches pain management for her son Nathan by using strategies to help reduce his anxiety about procedures.  In this blog, she discusses how her family has learned to cope with Nathan’s pain and anxiety around invasive medical procedures during his cancer treatment.

 

 

by Dawn Norman, mother of Nathan

It is difficult to prescribe a one-size-fits-all technique or routine to help children who are dealing with painful procedures and the anxiety the procedures cause. Every child is different and has different pain thresholds. For some children, the painful procedure might not be what causes the anxiety as much as something associated with it. For instance, our son Nathan, who has been battling brain and spinal cord cancer for eight years since he was two years old, would prefer a needle any day over wearing a hospital gown. A hospital gown…

Preparation before procedures – like practicing the motions and process of the procedure to the extent that it is possible, and discussing the child’s thoughts and feelings about the procedure – can be helpful with reducing pain and anxiety during the procedure.

For Nathan, the three things that cause him the most anxiety are wearing a hospital gown, having the chest leads put on for the EKG during procedures, and having a gauze pad put under his Band-Aid. One of the ways that we help with this anxiety is to allow him control over when and how these things take place. While he understands that most of these protocols are necessary, his nurses and doctors are sensitive to the fact that there are some things we can allow him to have control over. For example, when he was smaller and had to have a procedure that required him to wear a hospital gown, we would let him know that once he went to sleep we would put the gown on him. He was fine with that. We believe in being honest with him about what is going to happen and how he may feel during or after the procedure.

For patients who are hospitalized, many centers have a practice of avoiding painful medical procedures in the patient’s room. This is done to preserve a sense of safety in their room.  Parents may advocate for their child to be moved from the room for these procedures.

Now that Nathan is 10 years old, although he still does not like to wear the hospital gown, he agrees to it as long as they will let him dress back in his regular clothes once he wakes up from his procedure. The chest leads are a different story, they still wait until they put him to sleep before they put those on him and then they try to take them off before he wakes up. The Band-Aid issue is one in which the hospital has agreed to just put the Band-Aid on without the gauze pad underneath.

Communication to the health care team of what works best for your child is essential – don’t be shy to speak up with what you know works well for your child.

Helping Nathan manage the pain that he feels during his procedures, together with allowing him some control over other smaller issues, has helped him to be less anxious during the procedures. The more that we can help manage the anxiety that he feels before or during procedures, the better I believe he deals with the pain that the procedure may cause.

It is important to ensure that the child is physically as comfortable as possible, including considerations such as comfortable positioning and room temperature.

Another thing that our family has heavily relied on is our faith. Before going into procedures, we pray out loud with Nathan and any of the nurses or doctors that are in the room for God to give him peace, healing, and strength. He very much relies on scripture as well as prayer to get him through as well as knowing others are praying for him. Having that peace makes each day bearable. On Nathan’s iPad lock screen he has the quote, “I don’t know about the remaining chapters of my life story but nowhere within those pages will it ever say I gave up.”

This is one of many verses that Nathan relies on:  “Be strong and courageous, do not be afraid or tremble in dread before them, for it is the LORD your God who goes with you. He will not fail you or abandon you.”  DEUTERONOMY 31:6 AMP

 


Resources for Parents:

·     An imagery guide for managing pain in children. It is based on arthritis but can be used for cancer pain too: http://www.arthritis.org/living-with-arthritis/treatments/natural/other-therapies/mind-body-pain-relief/guided-imagery.php

·     A child life specialist at SickKids Hospital demonstrates deep breathing for pain management: https://www.youtube.com/watch?v=mnFhDbpAwBE

 


Reference

Liossi, C. (1999). Management of paediatric procedure-related cancer pain. Pain Reviews6, 279–302.

 


Dawn is a wife to Bobby and mother of 5 wonderful children (Sarah, Matthew, Nathan, Tabitha, and Josiah).  She is a graduate from Liberty University in Interdisciplinary Studies with focus areas of Psychology, Religion, and Business.  She was working on her Master’s degree when her son was diagnosed with cancer.  Her third child, Nathan has been battling brain and spinal cord cancer since 2009 just after his 2nd birthday.  The Norman family started Nathan’s Hope in 2012 to help fund pediatric cancer research and also to help families that were battling with living expenses.  Dawn feels like God never wastes a hurt and tries to use her family’s experience to reach out to other families that are battling with help, hope and encouragement.

 


 

 

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