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
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#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.
Sources:
*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…
Sources:
The Importance of Community: Part II
Parental Health & Community: Part II. Why is it so important to have a social safety net for parents? And does parental support impact parental mental health? Follow @ParentSuitcase on Instagram and Pinterest for content on parental well-being, parental health advocacy, and community.
Would you consider a disrupted support system to be a risk factor for postpartum depression?
One of the (many) reasons why community support for parents is so vital…MENTAL WELL-BEING!
In an ideal (frankly realistic!) world, postpartum parents would receive additional external support & extended time off granted for postpartum recovery following the birth of their child(ren). Over the past 2.5 years, support systems have drastically shape-shifted to navigate unpredictable circumstances due to CV-19, leaving many without reliable backup newborn support / childcare, household support, local support, etc.
We have all read & seen statistics on both postpartum depression and postpartum anxiety covered on social media. According to various bodies of research, anywhere from 1 in 7-10 women will experience postpartum depression following birth.(1) It’s also been estimated that approximately 50% of mothers with postpartum depression are not diagnosed by a healthcare professional. (1)
Whether your friend, neighbor, or a beloved family member has postpartum depression OR is exhibiting a change in mood or behavior, one of the most important things to do during that period of time is to demonstrate support, encouragement, and to be nonjudgmental. It can be very difficult for people to reach out if they feel like they are being judged either silently or outright.
What are some of my favorite resources for parents who are struggling to find community and / or may be looking fo additional therapeutic support?
Here are 5 resources to utilize if you or someone you know needs additional support as a postpartum parent:
Postpartum Support International: https://www.postpartum.net
PSI HelpLine: 1-800-944-4773 #1 En Español or #2 English
Text “Help” to 800-944-4773 (EN), text en Español: 971-203-7773
988 Suicide & Crisis Lifeline: if you or someone you know is struggling or in crisis, help is available. Call or text 988 or chat 988lifeline.org
National Alliance on Mental Illness: https://www.nami.org/help
NAMI HelpLine can be reached Monday through Friday, 10 a.m. – 10 p.m., ET.
Call 1-800-950-NAMI (6264), text "HelpLine" to 62640 or email us at helpline@nami.orgPerinatal Support Washington: https://perinatalsupport.org
Need help? Call or text our toll free peer support line (se habla español).
1-888-404-7763
The Family Help Line: http://www.parenttrust.org/for-families/call-fhl/ Call: 1-800-932-HOPE (4673) in Washington State
It’s not just therapy that is the answer here. It’s adequate resourcing, accessibility, equity, and feeling like you are DESERVING of support.
If you or someone you care about is experiencing concerning symptoms, please connect with a licensed mental health professional or healthcare professional to discuss in more detail.
Follow @Parentsuitcase on Instagram and Pinterest
Disclaimer: The information on this platform is not intended or implied to be a substitute for personal professional medical advice, diagnosis, or treatment. All Parent Suitcase website & Parent Suitcase social media 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.
Sources:
https://www.postpartumdepression.org/resources/statistics/
What is Parent Suitcase?
Parent Suitcase is a community for parents everywhere, facing various struggles and circumstances. With an emphasis on genuine connection, community, and belonging, @parentsuitcase offers professional, evidence-driven resources that get to the true heart of the various issues parents face. The mission behind Parent Suitcase is to develop a community that holds what many parents have been lacking in their journey of navigating parenting obstacles; community, empathy, and connection. Follow @parentsuitcase on Instagram and join my new Patreon!
Parent Suitcase is a community for parents everywhere, facing various struggles and circumstances. With an emphasis on genuine connection, community, and belonging, @parentsuitcase offers professional, evidence-driven resources that get to the true heart of the various issues parents face. The mission behind Parent Suitcase is to develop a community that holds what many parents have been lacking in their journey of navigating parenting obstacles; community, empathy, and connection.
Parent Suitcase has a distinct and intentional focus on quality of content + resources over the aesthetic “quick fix” method that’s currently crowding social media. PS aims to be a hub of insight + resources that tackle real topics that are often glossed over (if mentioned at all) on social media.
On this platform, we will be covering some difficult topics. My goal is to bring you data-driven content, real-life perspectives, hand-picked resources, and to further encourage collaborative dialogue. The “parenting village” that you have been looking for is being created right here; together, we will assemble a suitcase full of resource, outreach information, and education for you and for the community surrounding you.
Parent Suitcase also focuses on advocacy, charity, and informative collaborative dialogue with other platforms. If you are interested in collaborating, DM @parentsuitcase on Instagram and send me your ideas!
#parent #parenting #parentproblems #parentingsupport #singleparent #parentingbyconnection #momsofinstagram #momstruggles #parenthood #firstdayofschool #honestmotherhood #seattle #unitedstates #helpful #help #familylife #seattlehealth #careermom #community #parentcommunity #momtobe #dad #dadlife #momlife #dadtobe
Follow @parentsuitcase on Instagram and join my new Patreon here!
The Importance of Community for Parents: Part I
“Why do parents share their personal stories on social media? Aren’t they opening themselves up for criticism and trolling?”
This is a question that I was asked by another parent. I had to think about that one for a bit because I, too, am not big into sharing a lot of personal details on social media. When I originally developed Run Tell Mom, the mission focused on sharing other parental experiences in an effort to build community and to strengthen connections between parents (both alike and unalike). I wanted each story to be a candid take on a parent’s personal experience, one that may resonate with another parent somewhere else in this virtual world. The more story spotlights I featured, the more inquiries I would get to share from another lens. I absolutely LOVED it because it felt like a community wanting to learn more about others, wanting to connect during an isolating, scary period of time when connection seemed like a distant reflection in the rearview mirror.
I felt like social media was becoming increasingly more divided and more contentious, so my solution was to cultivate a virtual social space for parents that felt collaborative, welcoming, and inclusive. I started collaborating with some amazing platforms: speaking with different mental health specialists, authors, doulas, keynote speakers, and healthcare providers on my platform and things just started making so much more sense to me. I was connecting with individuals whom I wished I met before welcoming my now 5yr old. I wanted a different type of support that focused on the parent and not solely on the child.
Following that recognition, I knew that I wanted to focus more on prevention, specifically for parental burnout & family planning. When I say family planning, I mean this in a very abstract sense: gathering resources for mental health support, locating parent & caregiver support groups, finding ways to eat healthy when you’re bone-deep exhausted, how to cross-train with your partner to achieve household equity, etc. In order for me to fulfill those tasks, I had to take more of a front seat approach and be the face in the videos, the Reels, the face not just the headshot. That made me feel uncomfortable because I try to keep my work life separate from private life. Keep in mind: the more you share, the more vulnerable you become to criticism and trolling.
I noticed that there were two strong, recurring themes throughout each collaboration and interview: the importance of social connection and belonging (and to be honest, it’s haaaaaard to authentically create that on social media).
Naively, I thought social media would be the most “natural” way to cultivate a sense of parental belonging- the convenience, the immediacy, and the massive reach that social media offers… it seemed like a no-brainer! It’s not that straightforward.
I’ve had conversations with other parents about how social media feels “competitive” or “harsh at the best of times”. It can feel a lot like high school for many of us: the like-for-like behavior, following popular accounts within one’s niche in order to get your top comments pinned for more platform viewership, interacting with other people whom are (most likely) complete strangers within comments. I stepped back and did my own case studies on the behaviors we all (maybe subconsciously) participate in on social media and I thought to myself “..am I doing this for ME alone or am I doing this to help other parents and caregivers?”
In what other environment are we saying stuff like “thank you for sharing” 10,000 times on another creator’s feed just to feel seen? For many, there is this inherent drive to gain more followers under the guise of calling it one’s community without thoughtfully cultivating feeling of actual community. It’s one thing to authentically support one’s account and their mission, but commenting just to generate traffic to our account for likes feels superficial and self-centered. And full disclosure- I speak from personal experience because I’ve participated in this and it feels yucky and unproductive.
So to answer the question “why does it feel competitive?”- the answer is two-prong.
1. Comparing oneself to the meticulously-edited feeds with clean homes, Pinterest-perfect curated lunches, mothers grinning ear-to-ear in family photos, all while tallying up one’s “like count” and comparing it to other platforms can negatively impact one’s view of self and alter your own definition of parenting success. How would the self-doubt trickle in? And why does it feel like we are competing against other parents in order to see a boost in vanity metrics? Because with every static grid post, every Reel, and every Live interview, there are metrics that are captured & displayed- the amount of likes you get, the views your Reels get, the amount of individuals that tune-into your Live discussion. Tethering your self-worth and personal growth to these vanity metrics can lead one to believe that they aren’t doing it right unless their metrics demonstrate increased numbers. So how do we cleave this? We stop focusing on the metrics as the sole measure of one’s self worth as a parent creator on social media. If your mission is to help parents, allow that to be the measurement of your platform’s success.
The other unpopular topic I am going to pull back the curtain on: why do we call people within our community “followers”?
It feels derogatory to call people “followers”, in fact when we were younger, being called a “follower” was considered derogatory. Certainly, they are “following” your content because they feel inspired by it or maybe it makes them feel seen, but to haphazardly label a group as a “following” places the those individuals on a lower hierarchical level than the content creator.
Think about any account that you follow that exceeds 50,000 people within that community. Imagine the content creator posts a static grid with some provocative statement on that static grid post. It’s like a tinderbox waiting for a sulfur-tipped match to spark a verbally combative debate within the comment section. Now, imagine that static grid post featured an opinion on motherhood- criticizing one’s parenting skills, food choices, or non-physical disciplinary actions. It can get emotionally-charged and pick up engagement speed REAL quick. Can this divide a community? Most certainly, yes. I am 1000% supportive of having an opinion and expressing it tactfully, but verbally attacking others on social media, and in many cases a person you’ve never met before, has its risks and the impact can linger on far beyond that virtual environment.
Maybe it’s a bit of a pipe dream, but I want parents to feel like the platforms they follow are really considering their mental wellbeing and internal point of view, not just their own vanity metrics or posting something purposefully antagonistic in order to grow their own account.
I hope you hang here with me while I slowly start to spin my wheels on this new endeavor. I want you to feel welcomed and empowered here. I also want you to know that I cover some tough topics, so please be kind in the comments- we don’t know what other people are going through, but we know that we want to feel like we belong, like we are seen, and like we have a real community looking after us in a way that feels authentic and supportive.
Stay tuned for Part II,
-Shelley
Founder of @ParentSuitcase on Instagram and @RunTellMom on Instagram
Pinterest: here!