Raising a Cancer Crusher

By Dave Whitfield

No one promised that parenting would be easy. Dave Whitfield knew his sanity would be tested when facing common obstacles like sleep deprivation, diaper blowouts, and the terrible twos. But who would imagine that parenting might involve unexpected hard things like childhood cancer? And who would anticipate a four-year-old's diagnosis just three weeks before the arrival of her younger sister, all while her energetic one-year-old brother rampages throughout her world demanding attention?

 

Raising a Cancer Crusher, told with candor through a father's voice, is about a couple caring for one sick kid, Ellie, and two reasonably healthy ones while juggling everyday parenting tasks and the many challenges of chemotherapy. It begins with pain and ends with gratitude, recounting a series of bumpy experiences across a 26-month treatment period. This memoir shows how joy and laughter can mix with hardship and uncertainty as Dave and his wife do whatever they can so Ellie can eventually cross the finish line having crushed her leukemia.

• Language: English
• Publisher: Dave Whitfield
• Release date: Nov 28, 2021
• ISBN: 9798201169978

Book preview

Chapter 1

The Leukemia Bomb

An answer arrived yesterday, about twenty-four hours after Ellie sat through additional blood testing, which our pediatrician and her colleagues had requested. It was surprising because the results were not expected for a couple more days.

We spent yesterday morning relaxing at home together. It was nice to be back after a two-week trip in Haiti, nice to relieve Jenn from her temporary service in pregnant-single-parent mode, nice to play with my kids again, nice to enjoy a low-key Sunday. At around 10:00, Jenn’s cell phone rang—Logan was upstairs napping, Ellie was watching cartoons in the living room, I was hanging with Jenn in the kitchen, and the on-call pediatrician was on the line.

We immediately shared glances that carried a great weight. Why were we being called by a doctor on a Sunday morning instead of during normal operating hours? Could he already have an update for us about our daughter? Jenn placed the call on speaker phone so I could hear as I stood at her side. The doctor explained that the results from some of the blood tests had come in, and the cause behind what Ellie had been experiencing appeared to be different from her original diagnosis.

We believe Ellie has leukemia.

Those words triggered something new, since I felt both in the moment and removed from it.

You all should pack up some overnight bags right now and head on over to the ER. I’ve called ahead, so they’re expecting you. They can check you in and walk you through the next steps.

I continued to listen to the doctor’s words, but I also stepped away from the phone, with my face contorting in response. I shook, swayed, and wept sharply, as quietly as I could, determined not to draw attention as Jenn tried to stay composed wrapping up the call.

What just happened? And how long did the doctor speak with us? Did it even last two minutes? We didn’t really stop to critique the deliverer, questioning how a person could unload such mind-blowing news so quickly over the phone before hanging up. Wasn’t this the kind of news one should receive in person? Or was this for the best, since it prompted a more immediate action on our part? Regardless, one minute we were scrubbing dishes in the kitchen, and two minutes later cancer had barged into our lives, uninvited and unwelcome.

For a time, we stood there, clinging to each other, crying, in shock. Besides following the on-call pediatrician’s instructions, we didn’t know what our next steps would entail. This sort of crisis wasn’t covered in the handbook we had read to prepare us for parenthood five years ago. We received plenty of advice about baby gear, soothing techniques, and potty training, but no one gave us a heads-up about watching out for our kid getting cancer.

We searched for a quickie silver lining. At least we had some clarity, which is what we wanted, right? But we also had a slew of questions. How long would we be at the hospital? We both needed to be there, so what would we do with Logan? Leave him at home with a box of cheerios, extra diapers, and Netflix? How would we explain this to Ellie? How would you even begin to tell a four-year-old that she has a life-threatening condition? What would she understand? Would she be able to pick up on how scared we are?

Ellie, we’re going to the hospital now, because the doctors and nurses over there are going to run some more tests to figure out what’s happening with your body. So can you help us pack up a few things before we go?

We punted the heavy conversation until a later time, mainly because we didn’t have many answers to our own questions. So with a few bags packed, Logan in a neighbor’s care, and our emotions scattered, we went back to the ER that had seen us four weeks earlier. As I dealt with a valet in front of the entrance, Jenn walked Ellie inside.

Hi, there. How can we help you? Before replying to the woman at the front desk, Jenn proceeded to bawl. Because she was quite pregnant, the staff brought out a wheelchair for her and escorted us back to a room in the ER with a sliding door.

The doctor who was to serve as Ellie’s primary oncologist popped in briefly to introduce herself to the three of us, but our more comprehensive introduction came a short time later as we left Ellie in the ER and followed our new doctor through the corridors to a small meeting room. Here we heard more about the diagnosis, the specifics that they had suspected but had not yet confirmed, and the additional tests that would be conducted. Much of the information was likely lost on us, given the frantic state of our minds. She could have done something outrageous, like slipping in an offer to buy our baby after the birth, and we probably wouldn’t have noticed. Jenn and I both had our moments when our composures cracked, tears escaped, and words were choked back, so our doctor spent half the time walking around the table to extend a box of tissues and give us some gentle taps on our backs. Was she the first in a long line of consolers we’ll encounter because of this?

Back in the ER, we were preparing for the migration to the fifth floor, which is the home of the pediatric oncology unit. Ellie’s bed was wheeled out of the room with the sliding door, and Jenn crawled in to make the ride more comfortable for our scared little girl. Many of the rooms on the unit are set up to be shared, meaning there are beds for two patients with a curtain between them. This one was designed for only a single patient, since it was in a triangular shape wedged in a corner of the floor. We could experience some privacy, and more important, we both would be able to spend the night. Each room had at least one chair with blue cushions that folded out into a place of sleep for a single person. By unanimous decision—but only after Ellie refused to share her bed—Jenn was assigned to the chair, while I would spread out on a camping mat.

The hospital wasted no time in initiating our family to the admitted life. There must not be such a thing as a solid night of sleep when you are an inpatient. The staff members entered regularly—about every four hours, to check vitals. I’m a deep sleeper, so it was disorienting to wake up on the floor of a strange room in the wee hours of the morning to find an unfamiliar woman walking around doing stuff to our daughter. I felt I had some responsibility to play a role with the middle-of-the-night vitals check, so I rose awkwardly from the floor to closely monitor the taking of the temperature and nod in approval at each step, as if a groggy dad could be of any assistance whatsoever to the staff.

Good technique, I said, still half asleep, believing mistakenly that the nurse was seeking my validation.

At some point, maybe at around 4:30 this morning, a nurse drew blood from Ellie for testing. We learned after we officially woke up that her labs showed she has the most common type of leukemia, called acute lymphoblastic leukemia (ALL). The explanation of the acute part made sense, for it referred to the speedy arrival of the cancer. When my uncle ran blood tests four weeks ago, neither he nor any other medical professional would have suspected leukemia, because just one of her blood counts appeared abnormal. But by the time more tests were ordered two days ago, her blood counts showed numerous abnormalities, which meant her cancer had taken off in her bone marrow only within the past month. I doubt this could have been caught any sooner, and it doesn’t sound as if much would have changed. But catching it when we did is important to note, because if the disease were left untreated, it likely would have been fatal within months.

Compared to adults, cancers in children are seen far less frequently, and they tend to respond better to treatment than cancers in adults. Leukemia is the most common type of cancer in children, and it is the second leading cause of death among those younger than 20 years. As for what caused her leukemia, we have no idea, but we can safely rule out possibilities such as a lifetime of smoking, excessive sunbathing, or eating poorly. It seems crazy trying to fight something so deadly when you have zero certainty as to where it came from. But at this stage, it doesn’t matter how it arrived, as long as it is soundly beaten.

If you have to be told that your kid has cancer, then this specific diagnosis might be welcome news. Many types have a less favorable prognosis, but this one is often treated successfully. And though it has not yet been confirmed, our oncologist believes it is the more favorable subtype, B-ALL, which refers to the type of lymphocyte that the leukemia originates from. I appreciated hearing the word favorable thrown around regarding her outlook, but it seems the walk must still be walked.

So it has taken until tonight, the evening of our second day in the unit, with Ellie and Jenn snoozing away, for me to have a chance to start processing what has happened over the past month. These two days have been exhausting and wholly unexpected. We had been scratching our heads for weeks trying to understand what she was experiencing and why. But now that we know that the what is cancer, we of course continue to cry out for that why, realizing we will never truly receive the answer. Taking in our paths both to and from this juncture is overwhelming, and there is much that I’d like to process but cannot because of insufficient inner-bandwidth.

So I sit still in the relative quiet of our darkened room, too frazzled to even muster a coherent prayer. I keep revisiting how in a matter of hours Day 1 of Ellie’s lengthy treatment will begin, and I wonder if we’re ready for all that’s to come—very little of which is clear. Soon the curtain that hides us from the hall lights and the late-night shift will be pulled aside to usher in the start of a new season that we never asked for and cannot avoid.

Chapter 2

First Steps

(Day 5)

On the morning of the first day of treatment, we reluctantly left Ellie after she was put under by the anesthesiologist, and we sat on a couch off by ourselves in a far corner of the spacious surgical center lobby. We fumbled with our phones and each other’s hands as our eyes darted from strangers’ faces to the front desk and back to each other. Whenever our bodies started trembling slightly, we would reposition ourselves on the cushions or lean into each other. The small talk that might otherwise have filled the air was nowhere to be heard, our mouths instead struggling to pronounce words gleaned from a new vocabulary of cancer.

Our daughter has leukemia.

Two days after receiving the news, we still had to rub our faces and repeat the words to help them sound less surreal. But despite our continuing state of numbness, the hard work had already begun, with Ellie in surgery.

While we waited for updates, a medical team performed a spinal tap, a bone marrow test, and a chromosome test, and they placed a shiny new port inside her chest, just under the skin. Through the spinal tap (or lumbar puncture), the team collected spinal fluid to search for leukemia cells and delivered her first dose of chemotherapy directly into her spinal column. The drug attacks a cell’s ability to divide, which is critical, since we don’t want the number of leukemia cells to increase. But because leukemia had already been confirmed and they did not find any leukemia cells in her spinal fluid, the main purpose became keeping leukemia cells from entering her spinal column and reaching her brain.

The bone marrow test involved a hollow needle sucking out liquid bone marrow from Ellie’s hip, while a larger needle removed a small piece of bone and marrow. By focusing on the marrow, which is the factory for all our blood, this would help determine the type and intensity of the therapy.

My understanding is that the chromosome test is a counting of chromosomes within the leukemia cells, and depending on the numbers, our medical team can more closely identify the type of leukemia and the expected efficacy of chemotherapy, which may be how they land on a classification of high risk, average risk, or low risk.

The port was installed on the left side of her upper chest. It is round, about the size of a quarter, serving as a direct line into a vein. Ellie no longer needs an IV connected through a needle in her arm; nurses now administer medications and fluids through the port. Because it sits entirely beneath her skin, there is less of a chance of infection, compared to an external PICC line. Plus, it will save the integrity of her veins, since she will be poked regularly.

You’ll be like Iron Man, I explained to Ellie before the procedure. You both have special objects in your chests to help take care of your bodies and equip you for the fight against powerful supervillains. Yes, cancer qualifies as a dastardly supervillain.

The day before the procedure, our oncologist sat us down again for two hours to go through the details of a trial that we could elect to participate in. It was a lot to absorb, and we absorbed very little. During Ellie’s treatment, she would be one of a multitude being studied throughout a larger network of medical facilities. Those running the trial would examine the effects of the drugs and how her body reacts, and over time the results would add up in a way that would hopefully make