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.”
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.
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.
At the hospital just after we found out about broken leg from relapse 1.
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 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.
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.
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.
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 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.