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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!

 

 


 

 

Post-Operative Pain: Phoebe’s Story

 

 

Many children with cancer require frequent surgical interventions – to diagnose, stage, or treat their disease. Other common surgeries for children with cancer include collecting a biopsy, placing a central line, or removing all or some of a tumour. This, combined with the move to day surgery to minimize the time a child spends in the hospital, means that parents are often responsible for managing pain and administering pain medications at home, and advocating for and learning about optimal pain management for their child while in the hospital.  

This can be a very daunting task as even the most routine surgical procedures can become painful and cause feelings of anxiety for children.  For many parents, it can be difficult to accept that your child needs pain medication. Adding to this, the media’s portrayal of abuse of opiate pain medications can make it feel overwhelming or even impossible to consent to give these to your child. Parents often worry that their child may develop an addiction, or have uncomfortable side effects from these medications.  These thoughts can lead to parents choosing to withhold medications for pain, or not giving these medications consistently and as prescribed.

However, poorly managed post-operative pain can delay healing, cause chronic pain, and lead to distress and anxiety with subsequent procedures.

 

 

by Jenny Doull, mother of Phoebe

Hearing that your child has cancer turns your world upside down. Our daughter Phoebe’s diagnosis of leukemia was our first experience in the medical world and we found ourselves suddenly and frantically trying to learn all that we could about this new place, so that we could adequately care for her. We learned that caring for a child with cancer is complex and often requires around the clock monitoring and creative solutions to manage pain. It’s an ongoing learning process and managing post-operative pain is one of the many aspects that parents and caregivers must become familiar with.  

Phoebe was diagnosed with cancer when she was just 9 weeks old. At the time of her diagnosis, due to her age, it was incredibly difficult to determine if she was in pain. She couldn’t speak and we were just getting to know her. She was also very small and the thought of giving her pain medications in addition to chemotherapy was very difficult for us as parents.

Phoebe was just 9 months when she went through a bone marrow transplant, a procedure which included multiple surgeries. By this time, we began to recognize behaviors that Phoebe would exhibit when she was in pain, but we were reluctant to give pain medication stronger than Tylenol because we were unfamiliar with and fearful of possible side effects of other pain medications. I remember nights when her pain was so severe, she would hold her breath, grunt and cry out. Her heart rate soared and we realized that if we couldn’t get ahead of the pain, she would experience even more complications. Her doctor at the time was very firm with us, explaining that she should not be in this much pain, that we have the tools to control it and doing so will help her heal. We agreed to a constant infusion of morphine – and as a mom, I remember not wanting to talk about this to anyone. Seeing my daughter in so much pain caused me to feel ashamed and scared.

But I quickly realized, when I saw Phoebe’s breathing relax, her heart rate come down, and as I watched her sleep peacefully and without pain, that we did the right thing.

As she grew older, we worked with Phoebe to come up with pain management techniques that she could do herself; simple things like deep breathing, distraction, and talking when she felt scared before a surgical procedure, helped immensely.  When we expected pain to be severe as a result of a more extensive surgery, we relied on stronger medications used in combination with psychological approaches to pain management. Our past experiences taught us the importance of remaining ahead of Phoebe’s pain.

To properly heal and to have optimal quality of life, pain needs to be managed and controlled.  

Some of our hardest memories of Phoebe’s cancer treatment are pain related. However, looking back, we realize that the most important thing we did for Phoebe, other than love her and care for her with everything we had, was help her to be comfortable. Cancer treatment is hard enough for a child, it shouldn’t be painful.

 

 


Reference

Fortier, M. A., Wahi, A., Maurer, E. L., Tan, E. T., Sender, L. S., & Kain, Z. N. (2012). Attitudes regarding analgesic use and pain expression in parents of children with cancer.Journal of Pediatric Hematology/Oncology, 34(4), 257–262. https://doi.org/10.1097/MPH.0b013e318241fd07

 


 

Jenny is a parent and passionate childhood cancer advocate, the latter role beginning in 2010 when her 9 week old daughter, Phoebe, was diagnosed with infant leukemia. Since this diagnosis, Jenny has worked to raise awareness of childhood cancers and advocate for change. She has co-organized national childhood cancer awareness events on Parliament Hill which have included lighting the Peace Tower gold to highlight the needs of children with cancer. She is co-founder of the Phoebe Rose Rocks Foundation – an organization founded in memory of her daughter Phoebe to raise funds for childhood cancer research, a founding member of Ac2orn (Advocacy for Canadian Childhood Oncology Research Network), and a parent representative for C17’s Research Network. Jenny enjoys writing and shares her family’s experience with childhood cancer and grief in a blog titled, Phoebe Rose Rocks. 

 

 


 

 

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.

 


 

 

Tips to Manage Your Child’s Needle Pain

 

 

Children with cancer endure many needle-based procedures that can be unpleasant, scary, and painful – causing anxiety in the child and their family.  Allowing your child to have some control over such needle-based procedures can go a long way in helping them cope with their pain and anxiety.  

In this blog we will discuss how you can use Topical Anesthetics and Distraction to help manage your child’s needle pain.

 

“It is important for parents to be informed so they can focus on the role that they can play in their child’s pain management.  Advocating for their child to minimize their pain and discomfort, be it physical or psychological, is critical and should not be minimized by the clinical care team.”  ~ Jonathan Agin, Bereaved Parent/Advocate

 

 

Using Topical Anesthetics

 

by  Janessa DeCoste, RN, Nursing Coordinator, Kids Cancer Care

 

It’s 9:00 am on a busy day in the pediatric cancer clinic; six-year old Bobby and his mom arrive to check in for their scheduled chemotherapy.  I greet them and chat with Bobby about the latest superhero toy that he’s holding in his hands.  After we are settled in the clinic I complete my initial assessment and ask the list of questions.  Any fevers? Any unusual rashes? How is your appetite? Have you been going to the bathroom? And then finally I ask okay are you ready for your port access?  A look of pure panic comes over Bobby’s face, and at the same time mom realizes that they forgot to apply topical anesthetic cream  on Bobby’s port (we call it “freezie cream” with the kids, sometimes it’s called numbing cream) before they left for the clinic so that it would be properly numb before the port access.

 

What should I do?

 

Should I apologize and say, “I’m sorry – but we have to get started as soon as possible, and we really don’t have time to wait for the anesthetic cream to set in.”  

Or do I reassure the family and say, “Okay let’s get this cream on as soon as possible and then we can access your port once the cream is ready.  I will call Jenna from Childlife to help us.”

I quickly weigh the options in my head and make the call to go with the second one.

 

As I relay my suggestion to Bobby and his mom to apply the anesthetic cream and that I will call Jenna from Childlife to help with the procedure, a look of pure relief comes over their faces.  Today they remain in control of this small decision in a bigger battle.

 

 

Topical Anesthetics: A Brief Overview for Parents

The following are a few options for topical anesthetics that may be utilised to help numb the area and decrease the pain where the needle will be placed:

  • Anesthetic patches and creams like EMLA™, Maxilene™ and Ametop™. In order to be effective, these products have to be applied 30-60 minutes before the painful procedure. Parents can purchase these over-the-counter at most pharmacies.
  • Topical vapocoolant (cooling/numbing) sprays (e.g., Pain Ease™), available in some hospital settings, are applied to the skin immediately prior to procedures. Parents can ask their health care provider if this is an appropriate option and if it is available to them.
  • Parents should ask their health care providers about any other medications, anesthetics, or sedation that might be appropriate for the procedure.

In the event that there may not be time to wait for topical anesthetics to be fully effective, there are a variety of other options that can be used to help with the pain associated with the needle injections.

Other Options

  • Buzzy® is an alternate way to numb the site where the needle injection will take place by using a technology called “gate control theory”. Using the body’s own nervous system, the gate control theory invokes the concept that the final common pathway for sharp pain to the brain can be shut out by the nerves that transmit cold and vibration senses. This in turn helps to dull or eliminate the pain.
  • Distraction, positioning, hypnosis, and touch can be helpful non-pharmacological interventions.

 

 

Using Distraction

 

By Jenna Schwanke, CCLS, Outreach Specialist & Certified Child Life Specialist, Kids Cancer Care

 

I head to the clinic to help with Bobby’s port access, I remember him from his last chemo treatment. I recall Bobby being a curious little guy; during his last port access he wanted to know everything that was happening and watched the whole thing so I grab my doll and port access kit as well.

 

“Hi Bobby! I’m Jenna – remember me?”

 

Right away I see that mom is flustered and looks a little anxious as the morning hasn’t gone exactly as expected. Bobby is sitting on his mom’s lap, looking equally anxious.  My first goal is to help calm both Mom and Bobby. While Bobby is still on his mom’s lap I pull out my deep breathing dragon and get mom to demonstrate how to take five deep breaths.  As Bobby physically feels his mom taking these deep breaths and feels her body relax, I see him relax a bit too.  Once they appear to be physically a bit calmer, I get out my doll and ask if Bobby remembers what a port access is.

 

“NO” he yells and buries his face in his mom’s shoulder.

 

Bobby is not curious about the procedure today. I encourage mom to keep taking deep breaths and to talk to him calmly.

 

I pull out three toys from my bag – an iPad, bubbles, and a story book. Once mom places him on the bed, she asks him to choose what he would like to do – he chooses the iPad. I help him and his mom find a game to play together.

 

Distraction:  A Brief Overview for Parents

Distraction can be a successful way for you to minimize the pain and distress of needle-based procedures for your child with cancer.  There are a number of key factors that play a role in the success: 1) child’s age 2) child’s coping style and 3) the person who is helping to distract the child (e.g., a parent or “moderator”).

Childs Age:

Having developmentally appropriate distractions is really important in being able to help your child cope with the procedure. Here are some examples:

  • 0-12 months: soft music, rattles, soothing voice/touch, swaddling, cuddling
  • 1-3 years: bubbles, sound/pop up books, musical/light up toys, blowing pinwheel, singing, storytelling, holding hands, comfort positioning
  • 3-5 years: bubbles, I Spy books, watching movies, music, squeeze toys, singing, storytelling, counting, comfort positioning, interactive games or apps
  • 6-12 years: I Spy books, watching movies, electronic games, music (using headphones), jokes/riddles, squeeze toys, bubbles, counting, deep breathing, imagery
  • 13-18 years: Watching movies, music (using headphones), electronic games, reading, squeeze ball, deep breathing, imagery, muscle relaxation

Know Your Child’s Coping Style:

It is also very important to take into account your child’s coping style and interact with your child accordingly. Here is one way to differentiate coping styles:

  • “Sensitizers” are children who feel more in control and comfortable if they can watch the procedure and know exactly what is going on.
  • “Avoiders” are children that would prefer to be distracted and ignore the details of what is happening.

These preferences are not set in stone; be aware that your child can change their preference from day to day.

Tips for the Parent / Moderator:

Children are like sponges and pick up on the feelings of those around them, particularly their parents. Using a calm voice, taking deep breaths and keeping your body relaxed can both physically and emotionally decrease the distress in your child, and allow for the distraction techniques to successfully help them through the procedure.

 


 

Follow us on social media using the hashtag #KidsCancerPain.

Together, we are “Making Cancer Less Painful for Kids”.

 


 

 

JanessaDeCosteJanessa DeCoste, RN, Nursing Coordinator, Kids Cancer Care

Janessa is the nursing coordinator with Kids Cancer Care located in Calgary, Alberta. She coordinates the medical and nursing aspects associated with camp and community programs for children affected by childhood cancer and other hematological disorders. Most of the year-round work she does focuses on ensuring that Kids Cancer Care engages in best practices in the field of pediatric hematology and oncology in a unique setting. She loves having the opportunity to see children and their families outside of the clinical setting not only surviving, but thriving.

 

 

JennaSchwankeJenna Schwanke, CCLS, Outreach Specialist & Certified Child Life Specialist, Kids Cancer Care

Jenna is a family outreach specialist and Certified Child Life Specialist with Kids Cancer Care located in Calgary, Alberta. She spends her days planning and overseeing safe and fun programs and activities for families in Calgary who have been affected by childhood cancer. She loves being able to provide these programs, as it helps provide respite for those on a tumultuous cancer journey. It never ceases to amaze her how many inspiring kids and parents she has met along the way. 

 


 

References

 

Jibb, L. A., Nathan, P. C., Stevens, B. J., Seto, E., Cafazzo, J. A., Stephens, N., … Stinson, J. N. (2015). Psychological and Physical Interventions for the Management of Cancer-Related Pain in Pediatric and Young Adult Patients: An Integrative Review. Oncology Nursing Forum, 42(6), E339–357. https://doi.org/10.1188/15.ONF.E339-E357

 

 


 

 

Tools to Help Assess Your Child’s Cancer Pain

 

by Sue McKechnie, CKN Editor

 

No parent wants to see their child suffer. Each and every one of us would take on the pain felt by our child if we could. In 2006 our 16 month old son, Shawn, was diagnosed with a cancerous brain tumour. We went from kissing his scraped knees to supporting him through surgery, radiation, chemo and many, many pokes and prods. Helping Shawn to remain comfortable was at the centre of our every day, our every moment. Because of his young age, Shawn was unable to verbally express his needs and as much as we understood his body language, we were traversing unknown territory when it came to assessing and managing his cancer pain.

Continue reading

Unlocking the Mystery of Your Child’s Cancer Pain

kcp-blogimage2

 

When a child expresses pain, it’s their body’s way of telling us something is not right.

 

 

“The public image of kids with cancer is not only bald heads, but that chemo makes kids nauseous/pukey.  I felt uninformed as to the pain Tegan would experience throughout her treatment.”  ~Jenn Lyster

 

by Dr. Kevin Weingarten

As Jenn alludes to above, cancer and pain are intertwined.  Pain can be present at the time of a cancer diagnosis, during treatment and supportive care, and pain can continue to plague patients and families for a long time after.  Pain is consistently ranked as one of the most common symptoms experienced by children with cancer.  In fact it is experienced by the majority of children with cancer.

 

It may seem obvious that cancer itself can cause pain, but pain can also occur from the treatments aimed at curing the cancer, such as pain related to surgery, radiation effects, orthopedic procedures (amputation, prosthetics) and complications of bone marrow transplants such as graft vs host disease.  It might catch some people by surprise to learn that chemotherapy may also cause pain.

 

Chemotherapy does not generally hurt when it’s given to the child, however it can have painful side effects.  For example, some types of chemotherapy can affect the way nerves work, which causes a type of pain called “neuropathic” pain.  This can create pain sensations such as burning, stinging or an “electric shock” type of pain.

 

“Tegan often said she had “sparkly” hands and feet, and her legs hurt all the time.”  ~Jenn Lyster

 

Chemotherapy works by killing cancer cells, but it can also damage normal cells. Some normal cells that are affected are hair follicles, blood cells and the cells that line our gastro-intestinal tract.  When this last group of cells are affected, it leads to a condition known as “mucositis” which can cause nausea as well as pain such as mouth sore pain.

 

“Tegan’s scalp to this day remains very sensitive after having lost her hair.  The different types of pain can truly be long lasting.”  ~Jenn Lyster

 

During the course of treatment and beyond, children undergo many tests and procedures – blood tests, lumbar punctures, bone marrow tests, IV needles and lines, etc. – many of which add to their burden of pain while undergoing treatment for cancer.

 

“Tegan was only 2.5 years old at diagnosis so her pain was often expressed through screams and tears, kicking and wiggling.  She knew then what to do to try to escape the impending pain.”  ~Jenn Lyster

 

From the suffering of the child and its toll on siblings and families, to its effects on sleep and quality of life, the impacts of a child in pain are wide ranging.  These things are experienced at the time when pain is occurring, but there is also evidence that pain has long term effects on children as well.  Maya, 26 year old childhood cancer survivor, expresses how the effects of pain altered her life in unexpected ways:

 

“Because of the long term effects of cancer I have undergone numerous procedures that have caused such pain as to require pain killers. I have been left unable to participate in life not only because of the pain, but also because the pain killers used to treat pain have an inebriating effect. As an adult I have reverted to a child without independence because of the debilitating effects of procedures to deal with the long term effects of cancer.”

 

Final thoughts:

  1. Most kids with cancer have pain AND find it distressing.
  2. The sources of pain related to cancer and its treatment are wide and varied.
  3. The impact of pain may be pervasive and long-lasting.

 

 

In this second blog of our #KidsCancerPain series, we took a look at the prevalence, sources, and impact of pain in children with cancer, as well as hearing true stories about childhood cancer pain.  Stay tuned for subsequent posts in which we’ll explore the wealth of evidence-based knowledge we have accumulated in treating cancer related pain in children.

 

 


 

kevinweingarten

Kevin Weingarten trained at Sickkids for Paediatrics and Haematology/Oncology, before completing a fellowship in Paediatric Palliative care at Boston Children’s Hospital. He completed a masters of bioethics through the Joint Center for Bioethics at the University of Toronto in 2014.  He currently splits his clinical time between Oncology and Palliative care and is the Program director for the palliative care fellowship at Sickkids.

 

Special thanks to:  Jenn Lyster, Childhood Cancer Advocate and Mother to Tegan and Jessie, and Maya Stern, 26 year old long-term cancer survivor, for their comments.


 

Reference: Twycross, A, Parker, R., Williams A, & Gibson F. (2015, November). Cancer-Related Pain and Pain Management: Sources, Prevalence, and the Experiences of Children and Parents. Journal of Pediatric Oncology Nursing, 32(6):369-84. doi: 10.1177/1043454214563751.