What a Cancer Mom Wants You To Know About Childhood Cancer Awareness

By September 24, 2015 Guest Posts and Interviews, I Would Like You To Know

What I Would LIke You to Know

This is the seventh in a series of guest posts in a series called “I Would Like You To Know”. In an attempt to create a space for people of all races, religions, creeds, ethnicites, genders, sexual orientations, disabilities, and socio-economic statuses I am seeking guest blog posts. If you would like to share your unique background, I would love to hear and share your story. Email me at Rachel[@]deletingtheadjectives.com with your name, a link to your blog, and a brief synopsis of your story with the title “As a _________ I would like you to know” in the subject box. You fill in the blank and the subsequently the gaps in our collective knowledge.


No one thinks it will be their kid. Honestly, most people don’t give much thought to childhood cancer at all. They may see a commercial or a Facebook post with a smiling bald kid and donate what they might have spent on a couple of lattes that week to some organization with cancer in the name. I know that I didn’t think about it. Not until I had no other choice.

Our 15-month-old son had pneumonia, his pediatrician said. Some fluid visible in his lung in the X-ray. Go down to the children’s hospital and they’ll give him intravenous antibiotics, and plan to stay a couple of days, the doctor said. My husband took the day off of work and took our son; I stayed at work and then went home to our four-year-old. The next morning, the X-ray was worse, which concerned the doctors. So they told us not to feed him, and they’d do their best to hurry him in for a CT scan to get a different kind of look at his lungs. That happened in the late afternoon. Then nothing. No word, no food allowed, just us worrying until our thoughts nearly crowded us out of the small hospital room that we shared with another family.

The nurse came in to stay with our son, and the social worker wanted to take us somewhere more private to talk to the doctor. Two minutes into the walk, I turned to my husband and said, “He has something awful. They aren’t going to walk us across the hospital to discuss a test result if it isn’t cancer or something terrible.”

Micah 3-12-2012 12-45-04 PM
Shortly after diagnosis, Micah had the surgery to insert the chest tube in his side, but no surgery for the central line placement yet.

And it was. “A mass in his abdomen,” the doctor said. I remember asking if there was a chance that it was benign. The doctor paused and quietly said, “It’s a very small chance.” We surprised ourselves, and the medical team, by immediately being practical. If he was not having any other tests tonight, our son needed food. And we wanted to know how soon he would have the needed tests to determine what he had, where else it might be, and when we’d have a plan to treat it. I remember they offered me tissues, but I wouldn’t stop to cry until I knew we were doing something.

Soon it was official: stage four, high-risk neuroblastoma, an aggressive form of the third most common childhood cancer. The team of doctors waiting for us in that conference room on the other side of the hospital told us that most kids aren’t diagnosed until they are stage four, and it isn’t because of anything their pediatricians are doing wrong. It is because for cancers like our son’s, the warning signs are all normal aspects of being an infant—trouble eating, being generally fussy, low-grade fevers. That particular cancer is diagnosed, on average, when the patient is only one.

August 15, 2012 : Micah naps after echo and EKG
Micah napping, worn out after clinic visits and an echo-cardiogram and EKG.

We learned quickly that our analytical natures would be helpful. All I wanted to do was curl up in a ball and cry, or yell at people and throw things. But I took a deep breath and asked myself how that would help our son. It wouldn’t. How would it help our older kid? It wouldn’t. So, we compartmentalized and moved forward.

Since his diagnosis more than three and a half years ago, he’s spent hundreds of nights in the hospital, and hundreds more days in outpatient clinics for medications and tests. He has learned the names of dozens of doctors, nurses, specialists and other hospital staff. He’s endured five surgeries (and needs at least one more), 36 sessions of radiation (which all required general anesthetic because of his age), 22 cycles of chemo, 13 cycles of immunotherapy, and countless needle sticks—from blood draws in his arm (which he doesn’t mind most of the time) to placement of IVs to injections in his thigh while two adults hold him down and he screams and begs you not to hurt him.

That list is not to solicit pity. It’s a testament to his resilience, strength, and amazingly good nature. For all of that, and everything not listed, we know that he is lucky. He has enjoyed most of his life. He has, however, lost some of his hearing, and he broke his leg because the bone was simply too weak from tumors to hold up an active 30-pound kid. When that bone healed, it curved in on itself and caused one leg to be shorter than the other. But he’s alive. We know how lucky that single fact makes us. And how fragile that luck is. I’ll get back to that.

Micah 8-24-2013 8-13-14 AM
At the hospital just after we found out about broken leg from relapse 1.
Micah chemo in LA 4-8-2014 12-09-55 PM
One effect of cancer, Micah’s tiny shoes with a lift in one.

Life with a cancer kid has some similarities to other special needs situations. You have to be more vigilant about what your kid is doing, where they are, what potential dangers are around them, and your potential solutions. You have to pay more attention to things like how your child is interacting with others (because the port sewn into his chest that enters his jugular vein and goes to his heart can’t take too forceful an impact from falling, pushing, or being hit), and how the kids around him appear and play (do they look sick? My kid with no immune system could, truly, get a life-threatening illness just from what might give some other kid a cough). You need to talk to teachers about watching for specific signs of illness, or to avoid certain activities, or let us know if he’s too loud and asking you to repeat things—if that happens, it could be a sign that his hearing loss has become more pronounced.

It’s a lot like being a scared new parent. Except this time, your fears are not only often rational but often likely to come true.

There’s also a huge learning curve. You are the front line for keeping your kid safe and dealing with the side effects of the disease and the treatments. So you have to know what to do. We have medical supplies everywhere in our house. Adhesive remover, masks, gloves, and heavier gloves for when his diapers were literally toxic because of the chemo or radioactive isotopes for scans or treatment. When our son had a catheter to his heart that sat outside of his chest, we had to keep the open wound sterile where the tube threaded into his chest and had to be trained to set up a sterile field, remove the dressing, clean his chest, and reapply the dressing in an exact location on a wiggly infant. We’ve learned a new language related to supplies and drugs used in the treatment protocol (all of the drugs have fun side effects like a small risk of multi-system organ failure or sudden death). We learned to read medical journal abstracts to research potential treatments once our son relapsed and there no longer was a roadmap to follow.

Micah drinking during scans 1-22-2015 9-33-45 AM
Micah drinking apple juice with contrast in preparation for an CT Scan.

We try to remember to live in the moment on good days. Because on the best days cancer is only a passing thought when your kid sneezes or tires out after riding his bike once around the block. And you make an effort to be grateful for each good moment. But trying so hard to sear into your brain the sights and sounds of your kids playing, laughing, and being normal kids often means you’re tearing up and instead thinking about whether or not you’ll remember the sound of his laugh if he dies. Or wondering if his cancer is already back, but too small to find in the scans. Because these things are always possible. One of the many problems with current cancer treatments for kids is that they are almost entirely treatments created for adults. Three medications specifically created to treat pediatric cancers have been approved in the past 40 years. More have been developed and brought to market to treat erectile dysfunction than to treat pediatric cancers.

Those adult cancer treatments often cause major long-term side effects. Heart disease affects nearly 90% of kids who survive. Kidney and liver damage are common. Hearing loss is nearly universal. Cognitive delays and brain damage are common especially in kids whose cancer was in or near their brains. And secondary cancers are huge. Even if your child is lucky enough to survive a decade or more past diagnosis, another cancer is likely. And for many kids, their systems are so damaged that their bodies simply can’t handle treatment. Like I said, our luck so far is incredibly fragile.

Micah chemo at CHLA 1-30-2014 10-42-37 AM
The gloves and excess of equipment make the dangerous and serious nature obvious to a mom who loves her son.

We learned during that initial hospital stay that there is no single childhood cancer experience. We’ve been reminded of it daily since then through the experiences of our friends and their friends in the cancer community. Some things are similar across the 16 major cancer types, like the need for some kind of access point to draw labs and infuse blood and medications (like our son’s port). That most kinds of chemotherapeutic drugs cause hair loss (and mouth sores and more) because they kill all of the fast-growing cells in your body, not just cancers. And that all of the kids with cancer are at a distinct disadvantage, because where a single type of adult cancer (like breast cancer or prostate cancer) can get 5% or more of the total federal cancer research funding, all of the 100+ subtypes of childhood cancers share what amounts to less than 4% on average of U.S. federal research funding. And they receive less private research funding from non-profits and drug companies. Instead, kids are treated with downsized and repurposed drugs that were developed to treat adult cancers, even though pediatric cancers are fundamentally different.

Micah immunotherapy hospitalization 3-19-2013 7-40-04 AM
How Micah amuses himself when he’s stuck in bed getting immunotherapy

And while organizations like to talk about how now 80% of kids live at least five years past diagnosis, which didn’t happen 40 years ago, the reality is much starker. The five-year-survival rate numbers are excellent for only the two most common types of cancer. Neuroblastoma has a five-year-survival rate of about 65%. However, if those kids relapse once, even if they fight off that new tumor growth, their survival rate drops to 5%. For kids with DIPG, a type of brain tumor, that initial five-year rate is 0%. They are terminal on diagnosis. Thousands of kids each year lose an average of seven decades of potential accomplishments.

We can do more. If everyone who knows someone touched by childhood cancer wrote to their members of Congress to urge them to support things like orphan drug credits (an incentive for drug companies to spend money on drugs actually developed for kids) and more research funding specifically for childhood cancers, we could save more kids. If they encouraged all of their friends to write those same letters, we could save even more. If we all committed to giving just a few dollars a year to reputable organizations that directly fund childhood cancer research, like St. Baldrick’s Foundation, Alex’s Lemonade Stand, and The V Foundation (which are just a few that we have supported) we could save more kids. If we worked together to build a movement, like breast cancer awareness advocates did in the 1980s and 90s, we could save more kids.

Micah 10-3-2013 1-44-06 PM
A happy little guy post dressing change with a view of his hickman line.

So the next time you see someone wearing a gold ribbon, ask them if it’s for pediatric cancer. Even better, wear your own gold ribbon and help spread the word that our kids deserve more. More research money and more time. And remember that kids like mine and the school bus full of kids (40+) that will be diagnosed with cancer tomorrow depend on the people who haven’t been affected to save their lives. More people making childhood cancer a priority before it hits their family, community, or school, means more kids will have a fighting chance.

Micah TK orientation 8-27-2015 2-58-15 PM
Micah walking ahead, eager to meet his transitional kindergarten class at orientation.

Kate Bernstein is a marketing communications and fundraising professional who tries not to let CancerMom be her only role. She usually keeps her cancer-related writing to about 140 characters in her Diary of a #CancerMom series and or tries to capture the experiences in pictures.

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Harper’s First Day of Kindergarten

By September 1, 2015 Family and Friends, Harper's 1st..., Le Guppy, Letters to My Daughter

Dear Harper,
You have been five for a little over a month and once the birthday countdown ended, the first day of kindergarten one began. You counted down the days, crossing them off on your mental calendar until it was the day before. And that was the first time I saw even a touch of hesitancy from you. As you put it “excited, but a little nervous.”  Accented with a laugh, an attempt to diffuse your nerves.  You picked out your clothes, first your socks, and then your underwear, a favorite dress, hair clips, and your pink boots.

The night before I took some extra time to tuck you in. Extra hugs and extra kisses. I even climbed into the top bunk and snuggled you for a while and long after I thought you were asleep, big questions came quietly from your little mouth. “Will I go everyday?” And I told you that you would go every day that dad went to work. How he would pack you into the car with your backpack and your lunchbox and walk you the last block to school. And the “but I will miss you” that was your answer . It broke me, the brave resolve,  because I knew it was true and I knew those feelings were reciprocated. But I also knew that you would be fine and I was right.



When you woke up the next day the hesitancy you’d whispered into the dark was gone. You went quickly through the shower and straight onto banana pancakes. You dressed and brushed your teeth and sat patiently while I braided your hair. Found your backpack and your lunchbox and pulled on your famous pink boots. You waited impatiently to leave and yelled through the bathroom door, urging your dad to shower faster . And graciously let me snap a few photos before we left.


We decided to walk even though it was a warm morning, even for August, because first day of school traffic is just ridiculous. You held your dad’s hand most of the way. You counted each pink fence post at the preschool down the road and picked wishes growing up from the cracks in the sidewalk. You stopped to watch butterflies and smell flowers because there are some things that have never changed about you. Even the electric buzz of something new couldn’t hurry your usual languid pace.

kinder5 Kinder6
And when we got there the auditorium was buzzing with 100 kindergarten kids being sorted into zig-zagged attempts at single file lines. That day we could walk you to class, so we waited for your teacher to appear and show you the way. She did and she looked excited and so did you and I was miserable. So happy for you, but miserable for me.  You picked a hook for your backpack and stopped to give Dad a fist-bump on the way in. You didn’t look back and I didn’t cry. I’m going to count that as a win-win for day one.

Kinder1 kinder2

Now two weeks in, you’ve got the morning routine down. The 6:15 alarm doesn’t surprise you. Usually you’ve got a good 20 minutes to spare before you have to leave. So far, you aren’t sold on kindergarten. You feel like you aren’t learning because everything has been review but kindergarten is teaching you about more than numbers and letters, it’s teaching you about being part of new community, about team work, honing your social skills. It’s teaching you independence and responsibility. It’s teaching you when to deal with something yourself and when an adult needs to be made privy to the situation.

I know it’s been hard. Some days you are tired and some days there are bullies who cut holes in your favorite dresses but even when I’m not there, we are in this together. I love you so little one, more than your ever expanding brain can even imagine.

Love, Mama

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There Are No Tomboys, Just Girls

By August 27, 2015 Motherhood, Women's Rights

2347428960_2a5a7d498b_oI don’t remember the first time I heard someone call me a tomboy. That title chased me through most of my childhood in a game of tag where tomboy was always it. I could run with the boys, at least  until I got to the clubhouse with the “No Girls Allowed” sign crudely tacked to the front door.  I was all about backwards baseball caps and the freedom that came with wearing pants and knowing there was little worry that everyone would see my underwear. It didn’t bother me at the time. I knew people weren’t calling me a boy, they were just letting me know I was bad at being a girl. It meant that I was also bad at being a boy and that there was an inherent weakness in me that I needed to keep inside. I knew that being a tomboy meant that I couldn’t let anyone see me cry.

Now that I’m a grown up  I know the term tomboy is pervasive. It’s used to separate one girl from the pack by creating a whole new title for her to reside under, alone, without her male or female companions. You are neither a boy or a girl, you are an other. It removes femininity by replacing it with masculinity and reinforces an unrelenting, very narrow idea of what it means to be a girl. Girls are pretty and clean, dainty and fragile. Boys are boisterous and proud, dirty and uncouth. One can only be considered a true girl if all the tick-boxes have been ticked. Check, check, check. You belong.

Tomboy doesn’t just affect the tomboys.  It’s  a label that boxes all girls in. It limits them by creating a dichotomy where the options are girly-girl or tomboy. Superheroes or Princesses. Blue or pink. Quick, pick. There is no going back. In a world with black and white convictions there is no time for individuals . There is no time for girls who like what they like without apologizing for their interests. There is self-doubt and confusion. I remember thinking that it would have been easier on everyone, especially my mom, if I had just been a boy.  Then I could wear what I wanted and the sideways glances every excited Star Wars conversations evoked would be unnecessary.

It also affects boys. It gives them the impression that their strength is directly connected to their biology and girls can’t be strong. Even tomboys are girls parading in sheep’s clothing. Giving tomboys their own label reinforces rigid gender stereotype where everyone is a pawn in their biology’s game.

In reality, there are no tomboys. Only girls. Energetic girls who play in the mud and carefully tuck the Incredible Hulk into bed at night. Smart girls who will grow to be doctors, lawyers, rocket scientists, rock stars, and professors.  Brave girls who stick up for their friends in the face of a bully. Clever, witty girls who keep everyone on their toes. Strong girls who climb mountains and survive the harsh terrain of heartbreak in its many forms. Just all kinds of girls, no (tom)boys allowed.

** Photo Credit : Jason Pratt

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Bento Showdown + a Go Green LunchBox , Honest Kids Juice, and Quinn Popcorn Giveaway

By August 21, 2015 Food and Recipes, Giveaways , Discounts and Reviews
Go Green Lunch Box

Over the past year I’ve slowly been reviewing bento lunchboxes for kids and now we’ve come to a point where I feel like I’ve done enough of them to warrant a show down. I’ll also be talking about easy stuff to put in those fancy lunchboxes that won’t bring on the mom guilt. And I’m giving away a prize pack featuring a Go Green Lunchbox , Honest Kid’s Juice, and Quinn Popcorn. I sought out each of these companies because there are staples in our home or something I have been interested in trying out for some time. Purchase links inside the chart are affiliate Amazon links. All thoughts and feelings expressed are my own.

Eco Lunch Boxes Tri Bento Review 1

Lunchbox Go Green Lunch BoxLaptop Lunches Bistro BentoEcoLunchboxes Tri-BentoEasyLunchBox System
Purchase Link PurchasePurchasePurchasePurchase
Full Review N/A Bistro BentoTribento N/A
Price $34.99 $19.99 $25.00 $13.95
Leak Proof? Yes Yes No No
Diswasher Safe? No Yes Yes Yes
Microwave Safe? Yes Yes No Yes
Easy to Clean? 4/5 2/5 5/5 3/5
Durability Thumbs Up Thumbs Up Thumbs Up Some discoloration but still structurally sound
Includes Lunch Bag? Yes No Kind of Yes


Laptop Lunches Bisto Bento Box Jazz

And once you’ve picked out the perfect lunch box you have to figure out what to put into it.  We try to keep stuff as healthy as possible around here. Lots of whole grains, fruits, veggies, and lean protein. Harper is a high energy. She can go and go and go. Like all day at Disneyland with out a breather or 7 mile hike. That kind of energy can often come with an insatiable appetite and I want to make sure the things that go in her body are the right things. Honest Kids juice has been our main traditional juice box alternative because they contain so much less sugar than other leading brands due to the omission of extra sugar. Quinn Popcorn pulled me in with their ecofriendly approach at quick, healthy snacks and their variety of unusual flavors like Kale and Rosemary.

Along with Go Green Lunch Box, Honest Kids and Quinn have been kind enough to sponsor a giveaway prize pack. Enter below for a chance to get yours.

a Rafflecopter giveaway

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