Peaks and Valleys

"I think we all have empathy. We may not have enough courage to display it." – Maya Angelou

BEEEEEEP! BEEEEEEP! BEEEEEEP! BEEEEEEP!

The grating siren of my alarm pierces its way into my sleeping psyche and jolts me awake. I blindly search for the snooze button on the hotel clock before realizing that my phone is the perpetrator of the horrific sound. I turn the alarm off and stare blearily at the bright numbers on the screen, “5:30am”. One hour before we must check in at the outpatient procedure department at Nationwide Children’s Hospital. We went to bed a short four hours earlier following a late night snack session for Hazel Basil, who is still managing the effects of being on yet another round of steroids that started last week.

Hazel has an outpatient procedure today called a lumbar puncture. The doctors will use a long, thin needle inserted directly into her spine to release a measured amount of chemotherapy into her spinal fluid. Turns out, our bodies do such a good job of protecting our brain and spine from chemicals in our bloodstreams, that methotrexate has to be delivered directly to the spinal fluid be effective on any cancerous cells that may have made their way into the spinal column or brain.

As Elizabeth and I get ready to go, Hazel rests fitfully on the bed. The current chemo cocktail that she is on has produced numerous side effects. As her white blood counts plummet, she becomes weaker and more irritable. She doesn’t sleep more than a few hours at a time and often is tired mere minutes after she wakes up. She is always hungry – thanks to the steroids – but is typically so uncomfortable she can’t figure out what she wants to eat. When she does decide what she wants, it often takes just a few minutes too long to make the food and she gets frustrated, yelly, and is too mad to eat. The vincristine makes her skin pale and more transparent and what little wisps of hair she had left have long since fallen out. Most days she just looks wiped out, frail, and forlorn.

We arrive at the hospital at 6:30am and the halls are already bustling. Many of the faces that greet us, both employees and patients, are familiar, having passed by numerous times over the past six months on the way to surgeries, check-ups, and infusions. We check in and sit in the waiting room until the nurse comes to get us.

We follow the nurse back to an “Access Room” and Hazel begins to whimper quietly. She and we know what is coming next. After checking a few standard vital signs, the nurse gently pulls down Hazel’s shirt to reveal a small bump on her upper right chest. This is her power port, an implanted central line into the large veins leading to and from her heart. The port is the preferred gateway into and out of Hazel’s system. All medications and chemotherapy are delivered via this port and it shows the signs of use. Small bruises indicate past accesses and there is a perpetual line of skin irritation from the multiple bandages that are used to secure the needle once it is inserted.

Elizabeth sits on the bed and has Hazel lay back into her lap. The nurse begins cleaning the area around the port with an astringent, which causes Hazel to gag and cough from the fumes so near her face. As the skin dries, a nurse readies the specially designed needle which is ¾” long and has a small tube with a clamp attached. Elizabeth wraps her legs around Hazel’s torso and gently holds her hand, telling her to squeeze it when it hurts. I lean in close to her face and gently hold down her arms and kiss her forehead. The nurse deftly leans in and places the needle into the port, but no matter how swift or accurate the placement is, Hazel still cries, screams, and tries to wriggle free. With tears streaming down her face she looks into my eyes and says “Owwww, owwww, owwww. Daddy, all done?! Owww.” Almost baby. Almost all done.

Co-workers, family, and friends often ask us “How is Hazel doing?” or “How have you guys been?”. I understand the premise of the question, they want to know how Hazel is feeling and if her treatment is progressing the way that it should. They want to know that she is ok and that my family is emotionally and physically capable of handling the cross that we currently bear. My default answer is always and will always be the truth, “She is doing well. We are ok.”

Hazel’s chemo is working and she is progressing at the appropriate pace for her treatment schedule, but that doesn’t mean that everything is simple or picture-perfect. Our daily routine is filled with the constant struggle of managing side effects, ranging from relatively minor mood swings to more drastic physical effects on her vision and temperature regulation. We have recently begun an eye-patching program to deal with amblyopia, likely caused by a combination of vincristine and far-sightedness. Some of Hazel’s chemo has also caused nausea, vertigo, and made her hands shake constantly. We have added medications meant to combat these side effects, but these come wrought with their own new set of side effects yet to materialize.

Our family is ok, too. Not great, but ok. We would be doing better if we didn’t have to deal with cancer, but beyond that, the kids are doing well in school, my job is solid, and everyone seems to be adapting to our current normal. I even spent some time with each of our older kids in the woods last week, chasing the ever-elusive bushytail through the treetops.

All told, we don’t have much to complain about right now, but I still struggle with the sheer volume of all that is happening to such a tiny person. I worry what it is doing to my family; what it is doing to her emotionally. I am thankful for the fact that she is so young, in the hopes that someday she may not remember all that of the pain she has been through. But I will remember. I will remember every access, every surgery, and every infusion, each event forever etched into my memory like a past battle from a far-off war.

Like any journey, ours is fraught with its own share of peaks and valleys. On any given day, when asked “How are you doing?”, I am likely only on the slope that connects our last summit to an impending gorge. Most of our time is spent climbing or descending that slope, trudging our way to the next poignant moment of happiness or hurtling toward a basin of despair. The miles between those two extremes often get forgotten, overshadowed by the sheer intensity that comes from achieving a monstrous goal or being delivered a staggering blow of disappointment.

The journey on that slope is too quickly forgotten, the process too swiftly minimalized. The steps we take toward our next “destination” are important, they are sacred. Those steps create our character, build our emotional stamina, and teach us many things about the human spirit. There is no way to sugarcoat it: the trip we are currently taking is awful. It’s terrible for my kids, my wife, and myself, but even worse for Hazel. Most of what she deals with daily to “make her well” is appalling, and yet it is so much better than the alternative.

There is no way that I can accurately tell you how I/We are doing. Most of the time, I don’t even know. But I do know this: every day we move forward. We put one foot in front of the other and continue along our path. We don’t always know the destination, but we always know the direction and that gives us purpose; that gives us hope.

In the distance, I see our goal: a magnificent peak with lush, green foothills, that give way to warm, lazy alpine meadows. The trail that meanders up its slopes toward the heavens ends at a majestic summit so close to the sky that you can almost touch it. Someday we will stand on that summit with Hazel, our shoulders heaving in exhaustion, but our faces jubilant and pointed toward the sun. The journey to get there is long, with many twists and turns yet to come, but we have a guide and He has a map. Our fate was written long before we even existed and this is simply part of the journey that is our life. Today may be tough, but we are ready for tomorrow.

“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11