Childhood Cancer Is…

September is Childhood Cancer Awareness month. Before the month comes to an end, I want to paint a picture of the realities of childhood cancer. Too often kids with cancer are shown as cute kids with bald heads. That is only a small fraction of what childhood cancer is.

Childhood cancer, at least in my experience, is:

  • Putting your entire life on standby, because cancer treatment is the top priority.
  • Watching your already small child lose muscle mass, and becoming rail thin.
  • Having to dig out old clothes you thought had been outgrown because your child is now smaller.
  • Seeing all of your child’s hair fall out in clumps. All of it. No more eyelashes. No more eye brows. And a mostly bald head that has a few stringy patches of hair that managed to hold tight.
  • Cleaning vomit out of clothes, sheets, carseats, strollers, shoes, and furniture.
  • Learning the sound of the pre-vomit retch so well you can catch the first vomit if you can get a container fast enough.
  • Carrying a vomit bag with you everywhere you go. Not as a safety measure in case your child feels queazy, but for the inevitable public vomiting display. And then telling onlookers it’s not a GI bug, your child isn’t contagious, it’s just chemo puke.
  • Feeding your child through a tube that enters their nose and stops at the stomach because they no longer have interest in eating.
  • Watching your child mostly nap. Playing requires more energy than they have most of the time, so napping and snuggling becomes their favorite past time.
  • Keeping a hospital bag packed at all times because you never know when you will need to be readmitted.
  • Wondering how adults manage to work while going through chemo or hide their cancer, because your child can barely stay out of the hospital while in chemo. And then remembering the chemo course given to children is more aggressive than the treatment given to adults.
  • Watching you child be brave and endure more needles and tubes than any child should have to experience, ever.
  • Spending more time in the hospital than home and losing large gaps of your own life.
  • Knowing the oncology unit is just one step down from the ICU. And an adverse event — like a tumor bleed that requires emergency surgery, or sudden difficulty breathing — might be just around the corner.
  • Having to dig out old clothes you thought had been outgrown because your child is now smaller.
  • Seeing all of your child’s hair fall out in clumps. All of it. No more eyelashes. Mo more eye brows. And mostly bald head that has a few stringy patches of hair that managed to hold tight.
  • Cleaning vomit out of clothes, sheets, carseats, strollers, shoes, and furniture.
  • Learning the sound of the pre-vomit retch so well you can catch the fort vomit if you can get a container fast enough.
  • Carrying a vomit bag with you everywhere you go. No as a safety measure, but for the inevitable public vomit. And then telling onlookers it’s not a GI bug, it’s chemo puke.
  • Feeding your child through a tube that enters their nose and stops at the stomach because they no longer have interest in eating.
  • Watching your child mostly nap. Playing requires more energy than they have most of the time, so napping md snuggling you becomes their favorite past time.
  • Watching your previously energetic, athletic child stop walking. Independent mobility hurts and just isn’t worth it.
  • Keeping a hospital bag packed at all times because you never know when you will need to be readmitted.
  • Wondering how adults manage to work while going through chemo or hide their cancer, because your child can barely stay out of the hospital while in chemo. And then remembering the chemo course given to children is more aggressive than the treatment given to adults.
  • Spending more time in the hospital than home.
  • Knowing the oncology world is just once step down from the ICU. And an adverse event — like a tumor bleed that requires emergency surgery — might be just around the corner.
  • Turning your home into a hospital-like environment with feeding pumps, IV antibiotics, IV nutrition, and IV fluids.
  • Agreeing to treatment knowing some of the side effects could kill or permanently alter your child, but the cancer left untreated definitely will kill your child. Side effects like:
    • Heart damage
    • Secondary cancer
    • Hearing loss.
  • Learning your child’s chemo recovery pattern better than their treatment team. Knowing ANC levels, monocytes, platelet counts, etc.
  • Having a wave of panic anytime there is a disaster (or pandemic) because that puts a strain on blood bank donations and your child needs transfusions regularly.
  • Being thankful for the good days while knowing it is only temporary.
  • Knowing how real scanxiety is.
  • Knowing the end of treatment isn’t the actual end of all fears.

Things Cancer Stole

September is national childhood cancer awareness month. It also happens to be the month my youngest daughter (third child) was diagnosed with cancer. She is my second cancer kid. Yeah that’s right, two of my kids (out of four) have been diagnosed with pediatric cancer.

I’m willing to bet every cancer mom knows the date she was told her child has cancer. I’m also willing to bet she felt like time stood still in that moment and she questioned what was happening. At least that is how it was for me. Cancer made my world stop. Not just stop, but halt and stop suddenly and hard. Pediatric cancer isn’t like adult cancer. There are no instructions to go to this test, go to that test, and we’ll get back to you with your results next week. Pediatric cancer is addressed with more urgency. Once a doctor thinks your kid has cancer or a tumor, you are sent immediately to meet oncology and your kid is admitted to the hospital that day. See, screeching halt.

Cancer, like many of my children’s diagnoses, stole things from my life with it’s arrival.

Ignorant Bliss

The first thing cancer stole was my ignorant bliss. It took that false sense of security that parents have thinking they are raising a healthy, appropriately developing child. Cancer just ripped the rug right out from under me to expose a cracked, unstable foundation. One day you think you’re doing OK, your child is a happy kid. Your kid appears to be healthy and then BAM—you learn cancer has been growing inside your child. And what happens after that cancer is exposed is even worse. You start to connect all the dots, all the cancer signs your child had that you brushed off as a symptom of something else. That fever a few months ago that you chalked up to a viral bug that must be going around. The changes in appetite that you thought was just a phase. Things you had brought up to your pediatrician, who also reassured you it was fairly common for a kid that age.

Don’t take that last part as a bash on pediatricians. Kids do funny things. Kids pick up germs everywhere. And most importantly the warning signs of pediatric cancer are all symptoms of other common childhood ailments. Your kid’s pediatrician is trained, and has the experience to tell him/her that whatever your warning signs, they were most likely related to something far more common than cancer. It’s the whole, if you hear hoof beats, think horses, not zebras.

Regardless, cancer stole the sense that all was right and normal in my world. After cancer, I was left with a motherhood filled with fears and doubts. Those fears and doubts, like grief, were strongest after diagnosis, but rear their ugly heads from time to time, and I’m never sure what or when those feelings will be triggered.

More Security

The first time it stole my ignorant bliss, but the second time it stole what little safety I thought I had regained. The second time one of my kids was sent to oncology wasn’t like the first. My world didn’t stop as suddenly as it did the first time. I had eight years between diagnoses and a few other pediatric medical issues on my plate. That second diagnosis came as less of a surprise. Not that I put together all the warning signs. I still had that 20/20 vision after having a confirmed diagnosis, but I was better at reading doctors’ reactions and had the luxury of time to do some research to figure out what could be happening to the youngest daughter. I won’t lie, when I found cancer as a potential cause, I immediately dismissed it because we’d already done that once. About a day later, after a lot of conversations with myself and my husband about why it couldn’t be cancer, I accepted that cancer was a good potential fit for the situation. I decided it was likely cancer just before the official referral to oncology was made.

But even without the sudden shock, cancer still took away a sense of security that I thought I had regained. I was at a point in my life where I felt like I finally knew what I was doing as a mom. I was at the point where I knew there wouldn’t be any more children, and it felt like everything was getting easier, simpler. And then cancer came back to remind me I can never forget it. I’m never safe. It always is lurking in the background, following my family to make sure I don’t forget about it. OK, it’s not really that personal or malicious, but it felt personal the second time.

The second time it took the safety and security that goes with surviving. As a family, we had been there. We were already part of that terrible club. We looked cancer in the eyes, declared not today, not my child. We came out victorious, our daughter was a survivor. I eventually had the sigh of relief that cancer was behind us. Cancer was a crazy footnote in an otherwise normal life. Or at least that is what it was until it wasn’t.

Give A Damn

I don’t remember how long ago it was, but there was a country song, “My Give A Damn’s Busted.” After cancer—after two cancers—I officially just don’t care about a lot of things. Things I once cared about, barely register. Things I should care about, I just don’t have the energy. I’m like a free-spirited hippie, floating through life, not caring about things.

Kids clothes don’t match, don’t care. Haven’t washed my hair in a week, don’t care. Left my house looking like I live in a tent, don’t care.

It’s not an all the time thing. And it’s not a depression thing. It’s more there are so many things that I now have to care about: fevers, signs of infection, medication schedules, water intake, food log, weight gain, that when I have an option not to care about something, I take it. As an added bonus, I’m comfortable with who I am, and I don’t really care what people think about me. Life is too short and too many things are too trivial for me to allot my attention its way. So if you see me at the grocery store with a stained shirt, a hole in my pants, and a messy bun that you aren’t sure isn’t one massive dreadlock, you can wonder how I let myself get here, or you can see me for what I am—a mom with a broken give a damn.

Patience with Others

Cancer took away a huge chunk of my patience for others. After the second cancer, my ability to take a step back from a situation and pause before responding took a BIG hit. You may have noticed from prior posts that this ability was one that has never been easy for me. But with practice, I was able to pause, and see a situation differently. Most notably, I would be able to justify others’ ill feelings toward things that never would have registered as a problem in my book. Like setting a broken arm with pins. I’m sure for some, that would be a big deal. For me, I don’t think I thought twice about it. I signed the consents, asked if my kid was required to stay overnight, or if I could just take her home afterward. Pinning a bone back in place seemed so routine, so low risk, that it never occurred to me to be upset about it. After I let a surgeon remove one of my kid’s organs, an essential organ at that, temporary metal spikes just seemed like a minor detail.

Now I don’t know if it’s entirely cancer’s fault that my patience has become extremely thin. I know COVID-19 plays into this too. Maybe it’s the combination of the two. But when it comes to people expressing their mourning of a life once lived, their own sense of normal—something I know in my mind is completely needed—I just can’t see it through my blind rage. I’m easily set off when it seems people can’t just hitch up their big girl pants, wade through the shit, and put their lives on hold until they are told otherwise. Because that is how I approached cancer (and all the other pediatric health issues thrown my way). I heard the news. I took a minute. I took a breath. I didn’t cry. I put on my big girl pants and asked what do we do now. I willingly, without hesitation, put my entire life on hold until the situation was over. I did it every time. I would, and likely will, do it again. I don’t know that it’s healthy, but that is what I do. I take everything head on, and figure out how to wade through the shit storm that is happening in my life, the one that came on without any warning.

So was it cancer that stole my patience? Or was it more like cancer (or maybe COVID) gave me rage? Maybe I was always this way, and cancer just amplified my normal traits. Whatever the reason, I’m not who I was before cancer and I don’t know if I’ll ever be that person again. Thanks, cancer.

Happy Mothers Day, Warrior Mama!

Oh, mama! I know your life is not what you thought it would be. I know this is not how you saw yourself as a mother — running to medical appointments instead of soccer practices. But your unimaginable life has made you a mother beyond compare. No one advocates for their child the way you do. You took on the world without time to think or prepare. You stepped in. You rose up. You madam, are amazing. Even if you don’t feel amazing.

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Happy Mothers Day!

Happy Mothers Day to the mother who has seen her baby in a plastic box. The mother who had to ask a nurse when she could hold or touch her baby for the first time. The mother who knows what a baby needs to do to move out of an incubator and into an open crib.

Happy Mothers Day to the mother who has seen her child intubated and knows the sounds a ventilator makes. Do-do-do-doo-doot. The mother who knows the difference between a ventilator, CPAP, high flow, nasal cannulas, and room air.

Happy Mothers Day to the mother who has spent countless nights (and maybe a few holidays) in her child’s hospital room. The mother whose child has been in an ICU (NICU or PICU). The mother who has spent so many nights in a hospital room with her child that she has a preferred style of parent sleep couch.

Happy Mothers Day to the mother who has spent hours in an emergency department with her child. Injuries. Seizures. Illnesses. Episodes of respiratory distress. Gateways to admission. Really too many reasons to list.

Happy Mothers Day to the mother whose child has a lifelong chronic condition. The mother who knows another admission may just be a matter of time. The mother who always waits for the other shoe to drop.

Happy Mothers Day to the mother who has sent her child into surgery. The mother whose been in a surgery waiting room more times than she cares to count.

Happy Mothers Day to the mother who takes her child to countless therapy appointments. The mother who has been told what her child will never do. The mother who hopes her child will defy the odds. The mother who helps her child find as much independence as possible.

Happy Mothers Day to the mother who prepares for IEP meetings like she is going into battle. The mother who fights to give her child every chance.

Happy Mothers Day to the mother who knows more about her child than she ever thought she would need to know. The mother who knows how her child reacts to medications. The mother who knows her child’s recovery patterns. The mother who knows what type of cough precedes vomiting.

Happy Mothers Day to the mother who has ever felt like a home care nurse. The mother who gives multiple daily medicines. The mother who feeds her child through a tube. The mother who has oxygen tanks and/or oxygen concentrator in her home. The mother who watches her child’s monitor for apneas and bradys. The mother who can hook up IV fluids, IV antibiotics, and/or IV nutrition in her home.

Happy Mothers Day to the mother who didn’t think she could all do this. To the mother who thought she wasn’t capable of managing her child’s health. To the mother who was and is scared. To the mother who feels overwhelmed, but continues to push forward. To the mother who gives everything she has to her child(ren) so they can have a more typical childhood. To the mother who still blames herself. To the mother who wonders why. To the mother who feels like she isn’t doing enough. To the mother who feels lost to her child’s medical diagnoses.

Happy Mothers Day, warriors! I hope you feel seen, appreciated, and loved. I hope you are celebrated. I hope you take a moment to realize how amazing you are.

The Irrational Fears of a Mom with Medically Complex Kids

There are a lot of posts out there about mom guilt and worries that go along with parenting. Am I spending enough quality time with my children? Am I setting a good example? Is my child kind? Does my kid have friends? Am I enough for my children? The list goes on and on. I’m positive every mom has these fears and worries. It just seems to go with the parenting territory.

I could write about these thoughts and worries too. I have them. I promise, I’m a regular mom with regular problems. But I won’t, at least not today. These fears already have voices. Moms talk about them pretty regularly. Basically, we moms are already normalizing these feelings and thoughts.

The thing is, I’m not just a regular mom. I’m also a mom whose kids have colorful and eventful health histories. I’m the mom of kids who battled cancer. I’m the mom of a kid with a pretty prominent disability. I’m the mom of kids who were born too early. I’m the mom of kids have logged more nights in hospitals than there are days in a year. So in addition to all the regular mom fears and second guesses, I also have another list other irrational fears related to not being “normal.”

Just How Crazy is She?

I worry someone who knows nothing about my family will overhear something about my children’s health and will have me investigated for munchausen syndrome by proxy. I’m 80 percent sure this will never happen. I know the medical issues my children have faced, and continue to face are all real. I know they are not related to anything I did or didn’t do. I know I didn’t cause them. I know the medical professionals who see us on a regular basis know we are legitimately affected by these issues. I know our friends and family know we just have really bad luck when it comes to health. I know all of this, but it doesn’t matter. It’s always in the back of my mind. And if I’m being brutally honest, I worry that admitting I have this fear will make someone all the more convinced that I do indeed have it.

Less crazily, I also assume most people will think I am making all of this up. They wonder why I would make all this up, and then roll their eyes behind my back. I get it. The amount of stuff my family, particularly the children, have experienced does seem far fetched—too far fetched even for the plot of a soap opera, unless it was for the town as a whole and not just one character. Either way, I would not blame anyone who hears (or reads) my stories and questions the validity of them. I promise not to even be offended.

Her Advice is Crap

As I talk to other moms and exchange tips and tricks, I fear that my contributions to the converstions will be dismissed or labeled as what not to do.

  • She said she didn’t think it was important to have all organic baby soaps and lotions, and two of her kids got cancer.
  • She said she drank coffee and ate lunch meat while she was pregnant and she delivered three months early.
  • She said her children are allowed to drink juice and cows’ milk, and she lets them eat processed foods. Her kids are not straight A students.

I am 60 percent sure this is not what is happening. I am 90 percent sure this is my own mom guilt finding a new outlet to make me doubt everything about myself. I still carry around a lot of unfounded guilt when it comes to my kids. Maybe if I had taken my pregnancy more seriously and rested more, I would have carried the twins to term. Maybe I consumed too many artificial food products while pregnant and that’s why my daughters had cancer. Maybe I should have spent more money to buy hormone-free animal products and organic everything to protect my children from, well, everything. Basically I am victim blaming myself.

Wait is She Excited about this?

I worry I come across too eager when I learn someone else has an experience similar to mine. Was my facial expression too cheerful when that mom said she was looking for a wheel chair? Did I actually look disappointed when I found out she needed a wheel chair for her 90-year-old grandfather? Am I too eager to connect with the mom whose child was recently diagnosed with cancer? Was it too aggressive to send my number and email to the mom at church who also welcomed twins into the world too early?

I’m sure at one point or another all moms over analyze how they have approached another mom at the PTA, little league, the playground, storytime, etc. But I don’t think I worry about those every day interactions as much. I’m a card-carrying member of our PTA and I volunteer for nothing. I don’t go to meetings. I won’t work the book fair. I don’t even care if my lack of participation is one the PTA officers’ radar. I’ve got time, and there could be a whole new leadership team next school year. It doesn’t bother me if every mom at T-ball thinks I’m a horrible person.

However when it comes to moms who have kids who have issues like my kids’ issues. Well, it’s a small pool. When you find someone who knows what you deal with, knows at least a piece of your reality, you don’t want to scare her away. You really want her to like you so you can have one more person who gets how you feel. Someone who you can really talk to about things. Someone who can help you prepare for a sleep study, a night in the PICU, travel after NICU, or recovery after a major surgery. You need someone who can tell you which medical equipment vendors are the most reliable.

She is Failing Her Children

I worry people will think I am prioritizing one child’s health over another’s. I worry people will think I’m not providing enough physical therapy at home. That I’m not spending enough time helping my children become great readers, and I’m not helping them commit math facts to memory.

I struggle the most with this category, because this is where I’m not sure those accusations are entirely wrong.

  • I spend too much time with whichever child is in the hospital and not enough time with the kids who are home.
  • I don’t read enough with and to my children.
  • I haven’t prioritized my children’s emotional and mental health the way I have prioritized their physical health.
  • My disabled child could go to therapy more often and we could and should spend more time on excersises at home.
  • I’m slowly causing my children to resent me because we don’t go to school fun nights because I think it’s too overwhelming to take everyone and didn’t bother to arrange for a sitter.
  • They hate me because they don’t always get to play sports or participate in clubs because we don’t have the extra money, all because I stopped working to stay home and provide care for the younger children.
  • I rely too much on my mother-in-law to help us when there is a hospital admission; when a doctor’s appointment conflicts with school pickup; or simply when I can’t figure out how to be in two places at once.
  • I worry my children will grow up resenting each other instead of growing into compassionate adults because they were short changed or felt neglected in those early formative years.
  • I worry that I don’t worry enough. I should not be able to sleep at night with all that is going on in my life. I’m all too comfortable in hospitals. I should be suffering from PTSD or PPD/PPA. But I actually sleep just fine. I don’t have trouble shutting off my brain or switching gears. I don’t cry when we get a new diagnosis or go into surgery. And I worry that means I don’t care enough.

So?

Seems as though this mom is a mixed bag of crazy. I’ve got mainstream mom issues. I’ve got fill-in-the-blank mom issues. I’m pretty sure my issues are only in my head. I recognize them as irrational (hello, title of this post). Maybe I’m crazy. Maybe I’m normal. Whatever it is, if you find yourself having the same irrational fears and doubts, you are not alone. And if it turns out I am alone, well, I’ll just own my crazy.