When a child is diagnosed with cancer: Part II
Part II of “How to manage a childhood cancer diagnosis”. Read more about available resources, childhood cancer family support, care plan approaches, and frequently asked questions. Blog: parentsuitcase.com.
Treating a child with cancer does not start and stop with the medical interventions.
There must also be careful consideration & management regarding the emotional and psychological health of the child, the parents, other siblings (if applicable), and the family in general. It is important to maintain as normal a routine as possible for the child, including schooling, time with friends, and enjoyment of other activities. While this may be disrupted if inpatient treatment is necessary & during recovery from treatment, the more the usual routine can be followed, the better for the overall health & wellbeing of the child and family. Of course, if modification is necessary for comfort, that is completely understandable. You have to do what works best for you and your family, and sometimes that means being flexible and adapting as needed.
What are some ways to create stability in routine?
Reading familiar books, maintaining a similar bedtime rouotine
Eating a family meal together
Doing something creative or something that brings you joy, particularly an activity that requires minimal effort
Prioritizing rest when needed
Working on school activities together (if applicable)
Finding ways to remain social, even if it can only be virtual (based on current needs & recommendations from healthcare team)
Scheduling virtual calls with school friends
Involvement of child life specialists can be very beneficial in this regard. This service is frequently available through pediatric specialty centers. Child life specialists work with children & families to help them cope with some of the stressors they may experience while being treated for cancer. They help families by providing different coping strategies while undergoing different medical procedures, preparing mentally for various tests / diagnostic procedures, providing parent education and ways to be supportive & educated on such procedures, developing coping tools for sibling support, etc.
There are many resources that can assist families, particularly during the treatment phase of childhood cancers. Connecting with other families with children with similar cancer types and treatments is critical to increase support for the family. Obtaining financial resources regarding travel and accommodations, if needed, is also available through many organizations and should be explored. It is also important to obtain reputable information from such sites as ‘cancer.net’, ‘cancercare.org’, ‘childrenscancer.org’, as well as sites dedicated to the specific type of cancer. If you follow me on Instagram, I recently covered this topic and offered some resources specifically for childhood cancer support here:
“My child just received a cancer diagnosis, what is my first step?”
How to support a family whose child was diagnosed with cancer
In anticipation of upcoming appointments, it can be helpful for parents to put together a list of questions to ask the treating providers. These 6 questions can include (and are not limited to) the following:
Is the diagnosis correct and how do we know? This question is not intended to offend the treating provider- the intention is to provide more insight on clinical findings, diagnostic results, pathology findings, etc. The more informed we can be as parents, the more we can understand the details of the child’s care plan, collaborative next steps, and how to best navigate it.
Can we have a second opinion? Again- this question is not intended to offend the treating provider. Having a second opinion can also help the family to feel more confident and empowered in the care that they are receiving and to further confirm the stage of the disease & diagnosis. Also, some centers may offer more advanced treatment options.
What are the treatment options and the associated advantages & disadvantages? The discussion of quality of life is a major consideration here. Being informed on the possible advantages & disadvantages of certain treatments allows you to feel more empowered while making such personal family decisions. It is important to consider and discuss the goals of treatment, which includes not only treating the cancer itself but maintaining comfort, symptom control, and quality of life.
Is the treating provider a pediatric specialist or is a referral to a pediatric specialist necessary?
What resources and services are available to help with support for the family and finances? Here is a list of resources for additional financial support: financial assistance for teens & children
How do we maintain as normal a routine as possible during treatment?
By considering the factors discussed above, the unimaginable difficulty of treating childhood cancer can be made somewhat more manageable for the child and family. For more information on this topic, please visit @ParentSuitcase on Instagram.
#childhoodcancer #cancercaresupport #childhoodcancerawareness #parentsupport #parentingresources
Disclaimer: The information on this platform is not intended or implied to be a substitute for personal professional medical advice, diagnosis, or treatment. All platform content including text, graphics, images, and information is for general information purposes only & does not replace clinical consultation with your own doctor/mental health professional.
When a child is diagnosed with cancer: Part I
How to navigate a childhood cancer diagnosis as a parent. Part I of II on Parent Suitcase.
When a child is diagnosed with cancer, there can be an understandably strong, emotional reaction from parents and family. There are several ways that this extremely difficult situation can be assisted, including obtaining information, gathering resources, and asking questions. Part I of this blog provides an overview of these elements to create a foundation for parents and families who may be navigating the challenges and emotions of having a child with cancer.
Childhood cancer may share some aspects with adult cancers, however there are also many notable differences. There are approximately 10,470 new cases of cancer amongst children younger than 15 each year in the United States.* These cancers account for numerous types- some are also seen amongst adults and others are specific to, or more frequent in, children. The majority of instances of cancer amongst children are not related to environmental or lifestyle factors, as is much more frequent in adults.
The diagnosis & management of childhood cancer is typically more specialized than it is amongst adults. While many forms of cancer in adults are treated in both community and specialty centers, the majority of childhood cancers are treated in specialized pediatric settings. This leads to increased challenges in access to care amongst families who do not live in proximity to major medical centers, where most pediatric centers are located. Treatment methods may also differ amongst children in comparison to adults. In part, this is the result of childhood-specific factors, such as growth. In order to preserve growth, treatment strategies amongst children may be substantially different than they would be for adults.
Another important difference between childhood and adult cancer is the prognosis. Amongst all types of cancer in children, the overall 5 year survival is approximately 85%. This represents an improved prognosis compared to adults. It is important to consider, however, that this estimated survival is amongst all types of cancer and, unfortunately, there are cancer types that are associated with a lower 5 year survival. The prognosis is dependent upon the type and stage of the cancer at the time of diagnosis, but typically there is a better survival rate amongst children with cancer than adults.
Parents and caregivers of children diagnosed with cancer are understandably presented with several significant challenges. There is the initial shock of the diagnosis and obvious concerns for the wellbeing and health of their child / loved one. In order to support themselves and those around them, there are several aspects that parents can emphasize.
They should obtain as much information as possible, both from the treating providers and through their own research. Understanding as much of the applicable medical information as possible is important in order to make informed treatment decisions as well as help answer questions that the child and other family members may ask.
By obtaining relevant and accurate information, anxiety about the diagnosis, treatment, and outcome can be reduced. It is crucial that parents understand as much as possible about the diagnosis and treatment options.
In order to make informed decisions, it is important to understand not only what is recommended by the treating provider, but also other appropriate treatment options. This may require obtaining a second opinion, which should not be a hesitation. It is crucial that pediatric specific specialists be involved with treatment planning and provision of as much treatment as possible.
Given logistical considerations, it may not be possible for every child to be treated in a pediatric specific center. In such cases, obtaining recommendations from a pediatric cancer specialist that can be implemented closer to home should be considered.
Please follow along for Part II: Childhood cancer treatment & other considerations
Follow @ParentSuitcase on Instagram and Pinterest
#parent #childhoodcancer #parentsupport
Disclaimer: The information on this platform is not intended or implied to be a substitute for personal professional medical advice, diagnosis, or treatment. All platform content including text, graphics, images, and information is for general information purposes only & does not replace clinical consultation with your own doctor/mental health professional.
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*Cancer.org
Parental Health, Partner Support, and PMADs: Part I
A collaboration with Scott Mair. We discuss different approaches to promote parental wellbeing, partner collaboration after welcoming a baby, and ways to better support one another while transitioning into parenthood.
I’m going to open this blog up with a question to all of the parents reading this blog:
How do you differentiate between struggling and suffering?
If you’ve been on social media lately, I’m sure you’ve heard (or seen) the phrase “the struggle is real”. According to Merriam-Webster: to struggle (v): to proceed with difficulty or with great effort.
Now to suffer , here are some definitions (v.):
to submit to or be forced to endure.
to feel keenly: labor under
to put up with especially as inevitable or unavoidable.
to allow especially by reason of indifference
to endure death, pain, or distress
to sustain loss or damage
to be subject to disability or handicap
According to various studies, parental stress has increased significantly during COVID-19 and has not returned to pre-CV19 levels*. We are collectively short on mental health resources & other ante/postnatal parenting support to meet these enormous demands. From a public health perspective, this is highly problematic as it can have a direct impact on child / family wellbeing. Parents are both struggling and suffering to varying degrees. Is there anything we could have done about this before it became such a colossally pervasive issue?
From a parental perspective, we need to overhaul the amount of support we, as a society, are extending to parents.
Effective stress management strategies- affordable, attainable, easy to access. Could this be a component of family planning? Certainly.
Support system scaffolding to aid parents throughout all stages of parenthood. If we have preventive measures in place as early as possible, it would help to mitigate more serious effects in the future (i.e. parental burnout, neglect, maltreatment, etc). Some examples of this type of “scaffolding” include affordable childcare, mental health services for both birthing partner and non-birthing partner, sleep optimization resources, and so forth.
Collaborative partner support- this is more of an individual discussion, although all parents can have discussions on household equity, their own definition of “household task completion”, and how family-specific tasks are divided amongst all contributing parties.
More time with your care team!!!!! There are so many bureaucratic reasons why one may have quick ante/postnatal visits (lots of patients, not a lot of time, administrative demands and so on). If you have questions for your care team, you should never feel rushed or dismissed.
Education on recognizing signs & symptoms of perinatal or postpartum mood and anxiety disorders (PMAD) and differentiating between “baby blues” and PMAD. Roughly 50-80% percent of new moms experience changes in mood and sadness during the first 2-3 weeks following birth which typically resolve without intervention- this is referred to as postpartum “baby blues”.** Baby blues and PMAD are not the same as symptom length and severity are different.**
If you follow @RunTellMom on Instagram, you know that parental health is one of my favorite topics to cover. One of the reasons why I started my @RunTellMom social media account was to provide a space for parents to share stories, to communicate and collaborate with other parents / specialists, and to bring you fresh insight and parental wellbeing resources to further support parents throughout various stages of their parenting journey. One of my favorite collaborators is Scott Mair. He is a Mental Health Campaigner, Author, Army Veteran, Trainer, Speaker and Consultant. Scott has been featured on multiple podcasts including @Therapy4Dads, Bystanders, Knock on Parenthood, to name a few.
Next week’s collaborative blog will feature Scott and some of his favorite tips and tools for parental support and parental wellbeing. Don’t forget to follow along on Instagram and Pinterest!
Stay tuned…
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