How having a child with cancer prepared me for COVID-19

In 2009, my son Nate was diagnosed with stage 4 high-risk neuroblastoma cancer. Neuroblastoma is a solid tumour cancer of the nerve cells and for Nate, the tumour sat on top of his right kidney with cancer also in 98 percent of his bone marrow. He was only two years old and I was on maternity leave with his five-month-old brother. Nate’s little body was riddled with cancer and would require nearly every treatment available to save him.

Nate underwent intensive chemotherapy, a major surgery, radiation, immunotherapy, and a stem cell transplant that caused pain, barbaric side effects, and left him extremely immune compromised, leading to much time inpatient at the hospital isolated to keep him safe.

Just when we thought we were through the worst of it, Nate relapsed with a brain tumour. We were told that a neuroblastoma relapse in the brain was fatal and that we should take him home and enjoy our last few months. But we refused to give up.

We found a promising clinical trial at Memorial Sloan Kettering Cancer Centre in New York City with about a 75 percent response rate. After another surgery and more chemotherapy and radiation, Nate was able to go to New York City for treatment. He received two innovative immunotherapy treatments, and after five years of continuous treatment, Nate was finally cancer-free.

Going through those five years of hell—there is no other way to describe it—taught us a lot about resiliency and most importantly, how to get through a crisis.

When COVID-19 began to rapidly spread in March, our first reaction was to protect Nate and his two younger brothers. Although Nate is years from treatment, his immune system is not the same as his peers and cancer treatment caused damage to his respiratory system. When Nate was immunocompromised because of chemo and radiation, we followed strict household rules to keep him safe and reduce the risk of infection. We used this past experience to put all of the same rules back into place—frequent hand-washing, limited public outings, face coverings, regular cleaning of surfaces and no visitors. Unfortunately, and fortunately, we knew what had to be done to keep Nate and our family safe.

Three kids posing for a picture on a walking bridge in a park

Nate (on the left) with his brothers. Photo: Courtesy of Antonia Palmer

COVID-19 is a humanitarian and economic crisis that will permanently change our world. We are all deeply concerned about our family’s physical health, mental health, and economic wellness. And while there is much we cannot control, there are things we can all do to help us get through a health crisis like COVID-19.

Advocate for your loved ones

The healthcare system is not always easy to navigate. The medical staff are doing the very best they can, but the system can often be taxed, especially in a health crisis like COVID-19. If you test positive for COVID-19, listen to the doctors’ advice on treatment, but also advocate for yourself and your loved one. The clinical trial we were able to access for Nate was because we researched and advocated on his behalf. One of those treatments is now available in Canada and the other is on the way. We are lucky to have universal health care in Canada and our country is relentlessly innovating and adopting treatments discovered outside of Canada. When you advocate for yourself or your loved ones, you can help others in our country access the same treatment.

Be gentle with yourself

A health crisis will affect your mental health. Full stop. Even if you haven’t contracted COVID-19, we are all feeling the stress of this crisis. We are stretched thin, and things in our lives that may have seemed easy before may now feel overwhelming or difficult. That’s normal. Think critically about what you can and can’t manage right now. If there are things in your life that feel too difficult, think about how you can adjust. Perhaps you are finding all of the Zoom calls to be too much, maybe working out isn’t possible for you right now or you decide to order in dinner more than you typically would. It’s okay. We are all in survival mode and we are going to have to make changes to get through it. Be forgiving with yourself.

Accept the help of others

We keep hearing we are in this together, but it means more than just the fact that it affects us all. What it also means is that we can support each other to help us all get through this. People who love you or perhaps even strangers may offer to help. When Nate was in treatment, family helped to look after our younger son, friends filled our freezer with ready made meals, and charities helped with expenses like parking and gas. It was difficult for us to accept this help at first, but we soon realized that accepting also helped those who offered. It helped them feel less powerless. Despite physical distancing, there are still ways we can support each other. Don’t be ashamed to accept this help, as it can help yourself but also the giver.

Believe in science

Science saved Nate. An early phase clinical trial saved his life after we were told he was terminal. Science isn’t static. It’s ever changing as researchers, oncologists, clinicians, epidemiologists, and other scientists are consistently challenging what we understand to learn more. When these experts get it wrong, it isn’t because science is wrong, it’s because science is working. In science, just as in life, we learn from our mistakes. We’ve learned something new and moved science forward. We are going to learn more about COVID-19 as we move through this crisis and at some point, scientific innovation will help us find a vaccine or treatment. In the meantime, if you are exhibiting symptoms, get tested. And listen to the current advice on minimizing the spread.

Antonia Palmer is a Board Director for Childhood Cancer Canada, the Co-Founder of the Ac2orn: Advocacy for Canadian Childhood Oncology Research Network, and the Founder of Neuroblastoma Canada. September is Childhood Cancer Awareness month and Antonia hopes that people remember that despite COVID-19, kids across the country are still being diagnosed with cancer, the number cause of death by disease of Canadian children.

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How the nuclear family structure was forced upon present-day Black families

A century ago, historian and civil rights activist W.E.B. Du Bois published a literary tome entitled Darkwater: Voices From Within the Veil, as both an autobiography and discourse on African history. In it, he emphasizes the importance of Black women and their centrality in the Black family.

He posits that the Black concepts of motherhood and femininity, and Black families’ historical system of rule by women and mothers, gave the world “not only the Iron Age, the cultivation of the soil . . . the domestication of animals, but also, in peculiar emphasis, the mother-idea.” That is, the conception of the mother as creator and sustainer, rather than the patriarchal builder with which the Western world is most familiar.

Du Bois’ passage, and the chapter itself titled “The Damnation of Women,” stood out then for its indictment of white supremacy in its attempts at destroying African notions of family and community. A century later, the passage leaps from the page, as the well-worn trope of the “broken” Black family—led by burdened mothers, in the absence of capable fathers—has once again been summoned from the crypt to force the nuclear family on Black communities.

Jamil Jivani, author and “advocate for community opportunities” under the Ford government of Ontario, this time leads the rearguard tilt at the windmills against “out-of-touch Twitter activists [talking] about defunding the police” and, for some reason, Black Lives Matter. Jivani, according to a tweet on July 7, seems to believe Black Lives Matter is short for “Black lives matter only if they’re killed by cops so don’t ask us about gangs and also we hate the nuclear family and capitalism but don’t ask about that either.”

In another tweet on July 23, Jivani claims the organization “excludes fathers” in their statement of beliefs.

On the Black Lives Matter website, the organization states: “We disrupt the Western-prescribed nuclear family structure requirement by supporting each other as extended families and ‘villages’ that collectively care for one another, especially our children, to the degree that mothers, parents and children are comfortable.”

None of this is new. The peculiarity of the Black family, which has always been of deep interest to the state and colonizing forces of white supremacy, is this: the strength and pride in Black femininity, motherhood and yes, matriarchal tradition.

I want to make something very clear: the most brutal social structure that Western civilization has managed to force on the present-day Black family—the African family—is the alienating nuclear family structure. This structure not only eroded the modes that Africans had long thrived on and carried out in their tradition, it drove the production of social and environmental ruin.

Single family homes, suburban blight, gentrification, and commuter and consumer cultures cast billions of tons of climate-changing gases into the atmosphere each year. The nuclear family is competition with one’s neighbours and family, rather than communal living, space-sharing and strength in the face of oppression: it is the erasure of our history; the replication of white supremacy with Black silhouettes.

In addition to the dispersal of families, the nuclear family model discourages African-rooted practices such as community fostering, fictive kinship, social fathering and other means by which Black people have counteracted the shearing forces of white supremacy.

The theories of historic race essentialism (such as that of French historian Jules Michelet) deemed these values to mark Africa as “woman,” and “her races” as “feminine.” Hundreds of years later, the theory proffered by the U.S. government’s Nixon administration on the Black family (commonly known as the Moynihan Report) concludes that “the Negro community has been forced into a matriarchal structure which, because it is [too] out of line with the rest of the American society, seriously retards the group as a whole, and imposes a crushing burden on the Negro male, and, in consequence, on a great many Negro women as well.”

This, of course, is hogwash. The nuclear family, and its individualized units led exclusively by patriarchs, are not of Black traditions.

These are concepts that deserve to be rejected in favour of our own traditions and histories—including the “mother-idea” Du Bois conjured—with which we ought to develop better relations. And these are concepts that, as uprisings against white supremacy and the evils of capitalism lay the contradictions of oppressive systems bare, need to be thrown overboard by the masses as we engage on this rebellious passage.

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We Are All Homeschoolers Now Edition

On this week’s episode: Dan and Jamilah are joined by official third host of Mom and Dad are Fighting… Elizabeth Newcamp! They discuss their new homeschool schedules and Elizabeth gives Dan and Jamilah tips on how to make their plans attainable, especially since they are also working from home. For Slate Plus: TV shows and movies for quarantine entertainment that will entertain kids and parents alike.

Slate Plus members get a bonus segment on MADAF each week, and no ads. Sign up now to listen and support our work.

Recommendations:

Elizabeth recommends practicing gratitude within the home by writing notes to your partner or writing down a few moments at the end of the day with your kids.

Dan recommends a label maker. Great for when your milk really needs to be labeled COW JUICE. 

Jamilah recommends reading “America Is a Sham” by Dan Kois.

 

Join us on Facebook and email us at momanddad@slate.com to ask us new questions, tell us what you thought of today’s show, and give us ideas for what we should talk about in future episodes.

 

Podcast produced by Rosemary Belson.

 

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This isn’t how I imagined my daughter’s first day of kindergarten

To say that 2020 has been a strange year would be an understatement. Somewhere in between the months of lockdown, global protests and general unrest experienced pretty much everywhere in the world, I’ve been trying to prepare my three-and-a-half-year-old to start kindergarten.

Every September, my social feeds are flooded with images of kids decked out in their backpacks, with fresh haircuts, ready to take on the school year. I’ll admit, I often rolled my eyes at these shots—what was the big deal? But now that it’s my kid’s turn, I feel robbed.

As I write this in mid-August, we only have a vague idea what school is going to look like. And with the uncertainty of how this pandemic will continue to play out into the fall and winter months, and the lingering threat of a second wave, it’s likely that the classroom will be a place of uncertainty for the foreseeable future.

This isn’t how I pictured my kid’s first day of school. Despite my silent judging, I know I would have taken the cute photo in front of the school’s brick wall and left with teary eyes, thinking of her toothy grin. But instead, I’m haunted by the images from the news of small kids in masks, separated by markers that keep them six feet apart as they quietly line up to enter the school building. Squeals of excitement are replaced by the intermittent beep of the thermometer as it takes each kid’s temperature and the hiss of the disinfectant spray sanitizing their school bags. The hallways are free of chaos, clutter, life. And this may be the best-case scenario.

While most government officials have announced their plan for kids to return to the classroom in September, if a second wave hits, it’s possible that they’ll all get sent home and the drudge of distant learning will become the new normal.

I realize I’m privileged to have these fears. Here I am worrying about a photo op and my kid being able to hug her friends when others have lost their jobs and are struggling to pay the bills. And, worse, people are still very much getting sick and dying from COVID-19. I understand that all of these safety measures are necessary and put in place to protect the most vulnerable. But even knowing this, I can’t hide my disappointment.

My daughter has been talking about starting kindergarten since she understood what kindergarten was. She’s desperate to be a “big kid” and finally flex some independence.

The author's daughter excited for school

The author’s daughter practicing for the first day of school. (Photo: Simone Olivero)

Even when school starts in September, there are still so many question marks. Without a summer orientation, I have no idea who her teacher will be, where her classroom is, where she’ll eat lunch or who will be in her class. Small things, sure. But these are details parents get because they help everyone ease into the transition.

While I’m relieved she’ll go to school every day, I’m nervous about putting her health at risk. I don’t know how I’ll be able to work if she gets sent home for 14 days because of a cough or a runny nose—things that are extremely common in the fall and winter months even when we’re not in the middle of a pandemic. And my biggest fear: What happens if we go back under lockdown?

As a parent, I just want my kid to have a normal life and a normal school experience (not that I can even define what normal is anymore). I don’t want her to be freaked out by all the extra measures or to look at her new schoolmates as beacons of disease to be avoided. I worry she won’t be able to understand her teacher if she’s wearing a mask and that she’ll lose interest in school before she even gets started. I have all kinds of negative thoughts about how this and the last few months will have a lasting affect on her psychologically.

But I also have hope.

If I’ve learned anything from months of lockdown, it’s that there are good and bad things about every situation. Although I’m shocked to still have my job and my sanity, I know I’m lucky to have enjoyed aspects of this unprecedented amount of forced family time.

Over the last few months, I’ve witnessed my daughter’s language skills explode with all the time at home spent with only two adults to speak to. And now that she so desperately craves interaction with someone other than her parents, any shred of shyness has been replaced by bubbly extroversion—she will literally talk to anyone we pass on the street.

Aside from when I was on maternity leave, this is the longest chunk of quality time I’ve ever spent with my kid—and unlike before, we’re both old enough to appreciate it. We’ve crafted, baked, watched movies, done yoga and attempted to learn new things. We’ve gone on adventures on our bikes, explored the empty streets of the city and finally had a chance to just slow down and enjoy each other’s company.

Without the comfort of her peers, I’m now her favourite person to cuddle with and the one she comes to when she has “a really great idea.” More than just being her mom, over these long months, we’ve become friends.

While I’m still anxious about what’s to come in September, I take solace in knowing one thing, and it’s that my kid is resilient—she’s more than proved that over the last few months. And, like all of us, she will get through this.


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The Quarantine’s a-Comin’ Edition

On this week’s episode: Dan and Jamilah are joined by Carvell Wallace to discuss how the Coronavirus has been impacting their areas and what they are going to do if their schools resort to online learning. We also ask Carvell YOUR catch-up questions, as posted on the Slate Parenting Facebook page! For Slate Plus: a listener question from a parent worried about her teenage son and stepson’s not-so-friendly competition for her affection.

Slate Plus members get a bonus segment on MADAF each week, and no ads. Sign up now to listen and support our work.

Recommendations:

Carvell recommends family time, which we seem to be well on our way to, because we only really have each other.

Dan recommends wallpaper. Not the wallpaper that requires messy paste. No, we’re talking the wallpaper that’s essentially a glorified sticker. Patterns everywhere!  

 

Jamilah recommends getting your children involved in politics.

 

Join us on Facebook and email us at momanddad@slate.com to ask us new questions, tell us what you thought of today’s show, and give us ideas for what we should talk about in future episodes.

 

Podcast produced by Rosemary Belson.

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This genius hack will help your kid get used to wearing a mask

Any parent who’s ever tried to make their little kid wear a hat knows that things don’t stay on kids’ heads for very long. So when many provinces announced schools were coming back full-time and that some kids would have to wear masks all day (in Ontario, it’s kids in grades four and up), parents rightfully worried how they’d get their kids used to wearing a mask for long periods of time.

But worry no longer folks, because Iowa dad Leland Michael has cracked the code to getting kids to accept the mask, and he posted it on Facebook for all to benefit from. Are you ready for it?

For the rest of the summer, screen time = mask time.

via GIPHY

Most kids will do anything for screen time. So by enforcing a rule that your kid has to wear a mask in order to use the iPad (or whatever other screen they’re hooked on to), you can easily get them used to wearing a face covering for longer periods of time. And if they still won’t wear a mask, then the rule states that they’ll have to find another way to entertain themselves, which means less screen time for the remainder of the summer! It’s a win-win!

Take a look at Michael’s original post:

For parents worried their kids won’t be able to wear masks for long periods of time this Fall, try this rule for your…

Posted by Leland Michael on Friday, July 31, 2020

Of course, eventually, you’ll have to find a way to explain to your kid that oftentimes, they’ll have to wear a mask when they aren’t using screens, be it at school or elsewhere. But with any luck, they’ll be so used to wearing a mask by then that it shouldn’t be an issue. Fingers crossed!

So would you try this trick? It would probably also help your chances if you get them masks that they like to wear—one in their favourite colour, perhaps? As well, you might want to get all their masks in the same colour to avoid the possibility of a tantrum over wanting to wear the green one that’s dirty and not the red one that’s clean. *Sigh*

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