Category: Pediatric Cancer

Another COVID Comparison

Here we are, seven, maybe eight months into the COVID-19 pandemic and I think it’s time to once again put this pandemic into a different light. Time again to compare this to raising medically complex kids. I feel like this should have special theme music while you read it. I’ll have to work on that.

Timelines Are Meaningless

At the start of this pandemic, we were dealing with things in weeks. Then we moved onto dealing in months. Now you may find yourself dealing in seasons. Either way, the timeline you were originally given, or thought you had, was meaningless. It’s like delivering prematurely and seeing your due date as the end goal. Or having a clear chemo map for cancer treatment that outlines when admissions happen and when you are home. It all looks good on paper, and for some it might work out that way. But for a lot of people — and always in my house — life finds a way to make its own timeline. My preemies came home months after my due date. They aren’t ‘all caught up’ by age 2, another timeline preemie parents are given. The chemo timeline for my daughter was weeks of hospital stays with a few days at home here and there.

In reality, the timelines are meaningless, and that is OK. You want to make decisions based on what is happening and not based on where someone drew a line in the sand. It can be frustrating to have a moving target. It can be taxing when it feels like this chaos is now your life. In a way, the chaos is your life, and that is OK.  Just like it’s OK to not be OK.

My best advice is to embrace the chaos. Become familiar with the parameters of what moving on looks like and start tracking things yourself. The down side to this is you cannot live in denial. The upside is there are very few surprises in this approach. For me the decision boils down to weighing whether I would rather get my hopes up and my heart broken regularly, or would I rather live in reality and be able to see the turns coming. In case you’re wondering, I always choose reality over blind hope. The disappointment that co.es with my blind hope is crushing and it’s not good for my mental health. I need to keep it as real as possible.

Self Imposed “Experts”

I’m sure your social media timeline, much like mine, is sprinkled with new found ‘experts’ in infectious disease. These are the people who suddenly know what doctors won’t tell you. Very ominous, very poorly informed.

In the context of COVID-19, they are the ones who tell you wearing masks will make you more sick; the virus will disappear after X, Y, and Z (none of which involves social distancing, masking, or developing a vaccine); and they try to pick apart every decision you make for your family’s health safety. These people are friends and family members, strangers you randomly encounter, and close acquaintances.

People surface to take on this role during every health issue. If you have typical kids, you probably didn’t know they existed outside of COVID. There are self imposed experts in all issues around health. The woman in the waiting room who tells you not to hold your cellphone while being near your children because of the link to cancer. The acquaintance who tells you about someone who gave birth in the first trimester and the baby is fine now (really, I think they just mix up gestational weeks with how many weeks early a baby was). The person at church who insists a special diet (be it clean eating, low sugar, etc.) is the key to beating cancer. They are the ones who have very little knowledge of what you are actually dealing with, but have  potentially life changing advice for you anyway. Many times, their miracle advice directly contradicts what specialists are telling you.

These people all mean well. At least I choose to believe they really believe the advice they peddle and just want to help you. But instead of helping, they become a source of aggravation. And how you deal with that aggravation really depends on when and how this information was shared. The cellphone lady in the waiting room got a casual “thanks for the information” and a private laugh and hard eye roll later. Wrong information sources with a closer connections got a challenge to the accuracy of the information they shared (e.g., a baby cannot be born and survive at 10 weeks gestation, you must have meant 10 weeks early, which is 30 weeks gestation). My reaction always depends on my mood, and how likely it is I will encounter them again.

To Work or Stay Home

When the COVID shutdowns started everyone thought this would be a short-term issue. Businesses temporarily closed, those that could switch to operating remotely, did. It felt like things we could figure out for now. After a while, with kids learning from home, parents working from home became challenging. Kids learning from home and parents required to physically report to work became close to impossible. A lot of parents had to get creative with scheduling and childcare. Many more parents felt forced to make difficult decisions related to working and caring for their children. Do they continue to work as they traditionally did and take on a nanny? Does one of them take a step back professionally to focus more energy at home? Does it make more sense for their family for one parent to resign and stay home with the kids? These alone are difficult decisions, but then they were compounded with pandemic issues of quarantining, and who do you trust to be as cautious as you are. It is a daunting emotional task.

These are the same decisions parents of medically complex kids face. A lot of us faced them before COVID. Some of us had to revisit them because of COVID. I am one of those moms who ultimately decided to put her professional life on hold.  My decision was inspired by the attention my kids needed and later reinforced by the overwhelming amount of time I would need to take off to attend medic appointments, therapies, and be present during hospital admissions. There also were issues around who did I trust to learn and feel comfortable enough to take on oxygen management, ostomy bag replacement, tube feeds, etc. That list was short, even more so because most of the list of people who I felt comfortable with, didn’t feel confident enough to step in for me for long periods of time.

But Wait, There’s More

Whether you think about COVID or just 2020, there always is new information coming out. COVID symptoms we initially looked at were cough and fever. Now the list of possible symptoms is at least five times longer. It feels like an infomercial rattling off product features only to follow the list with, “but wait, there’s more.” Always a new piece of information. A growing list of long-term side effects. Really, now is the perfect time to say, “but wait, there’s more.”

Not all parents of medically complex kids may agree with me, but in my experience my kids’ conditions also involve a lot of, “but wait there’s more.”

  • Your twins are very early and very tiny, but wait there’s more, here is a whole list of NICU conditions you will experience before you can go home.
  • Your son has hydrocephalus, but wait there’s more, he also has CP.
  • Your daughter has liver cancer, but wait there’s more, she also needs an organ transplant.

Even now, when things in my house seem to be stable, I brace for the next, “but wait, there’s more” episode. I always expect there will be something else, not that I want it, but expecting it makes the news less devastating. It’s really a prepare for the worst and hope for the best mentality. It seems to serve me well.

Why Compare?

My point here only is that life changing events come with universal issues. Whether you experienced these issues alone or you experienced these issues with a nation of others, it all sucks. I make these comparisons to let you know some people have a lot of experience with these issues. To let you know, they are survivable. To remind you, your life and happiness are not tied to ‘normal’ life or expectations. After all, normal is only a machine setting.

Basically, it’s all going to be OK.

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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.