Angels in White Coats

“Jesus withdrew about a stone’s throw beyond them, knelt down and prayed, “Father, if you are willing, take this cup from me; yet not my will, but yours be done.” An angel from heaven appeared to him and strengthened him. And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground.” – Luke 22: 41-44

I have been in a church pew every Sunday morning since I can remember and spent many of my summer nights as a child attending gospel sings, revivals, and church picnics all throughout the Mid-Ohio Valley. I have attended small mountain-town churches, large, multi-service mega churches, Christian music festivals like Alive and Creationfest, and went to summer church camps each year since I was 10 years old. I grew up believing that I did not have a “testimony” because I didn’t need one. My faith was built over decades that spanned a lifetime and my relationship with God was created from knowledge gained from long-term personal studies. I did not have a single event in my life that I could point to as a defining moment for my faith and naively believed I never would…until Hazel’s diagnosis.

In April of this year, I had my world shattered, my legs cut out from under me by a direct attack on my child. She was innocent, unassuming, and pure, stricken by an invisible, insidious disease over which I have no control. The weeks and months since have been a mess of emotions as I and my family have attempted to adjust to this new reality and help Hazel focus on her battle with Leukemia. I have been forced to do little more than watch as Hazel fights for her life, enduring countless hospital visits, rounds and rounds of chemo, and side effects that have ranged from benign to disgustingly evil.

If there is an event in a lifetime that can serve as a defining moment, it is certainly a cancer diagnosis. As a parent, there is nothing that can prepare you for that moment. We constantly worry about our kids when they are healthy, but it reaches an entirely new level when we know they are sick, really sick. This isn’t cutting grapes in half so they don’t choke or ensuring they wear a helmet when they ride a bike, this is cancer. It's life or death. It's survival. A struggle of this magnitude demands our respect, weaves its way into our psyche, and changes us forever.

I have been told that our family’s story has given others hope, has strengthened their faith because we stand strong in our testimony during this trying time. I would love to be able to say that I am living my testimony now, that this experience has created in me a belief so strong that I can move mountains. But the truth is I don’t really know if that is accurate or not. Is it really faith that I have, or is it simply a crippling fear of losing my child to cancer? How can people look up to us as an example if what keeps us going every day is not just an unwavering faith in the good, but a deep understanding and fear of what the bad looks like?

Every day when I wake up, I am faced with the realities of eternal good and damning evil. The Devil lurks at my door waiting for the final chink in my already cracked armor that will allow him to fling an arrow at my tired heart. He searches for the final straw that will break the back of my camel, and allow him an avenue to destroy the foundation of the faith that I have spent decades building. Up to now, I have kept him at bay. Every good report from Hazel’s doctors vaccinates me a bit more against evil’s advances, and every setback brings me a bit closer to tumbling over the precipice into the abyss of despair.

I will always yearn for my life prior to Hazel’s diagnosis, I will reflect on this period of active battle with a deep-set bitterness, and I will cherish my time after with the utmost reverence for our blessings. Life’s defining moments hold an immense importance because we are given the choice of two paths: one path that allows extreme heartache, pain, and fear to crush all that is good in us; the other path uses our pain as a catalyst of antithesis, providing spiritual growth and strengthening in the face of true adversity. Our path is still being formed, and at times, just like Jesus in Gethsemane, we beg for our cup to be taken from us. But also like Jesus, God often sends us angels to help strengthen our resolve and grow our character.  

I know that angels exist on this earth. I have witnessed their works and felt the hand of God delivered through them daily. I know several angels by name and have developed deeply personal relationships with them during Hazel’s journey.  My family has been hugged by them, consoled by them, we have laughed with them, and cried with them. Many of the angels that have visited us have come cloaked not in a ring of light, but in white coats. Our most recent visit came on Tuesday, following our latest admission to the hospital for Chicken Pox.

A doctor from our original attending team found that she had a rare day off. A day of rest from the constant pressures of 12-hour shifts in one of the busiest hospitals in the world, and one that normally would have been spent catching up around her house or spending time with her husband. Instead of spending Tuesday at home relaxing, our angel chose to come into the hospital and spend six hours in a full gown, respiratory mask, and gloves visiting and comforting Elizabeth, Hazel, and I as we were quarantined in our room on H12. This individual has only known our family for eight months, but calls all our children by name, has sat listening intently to each of our birth stories, and constantly tells us that our blog is a beacon of faith that helps keep her strong as she continues caring for all the little ones that enter NCH’s doors. She is but one angel in a sea of white-coated angels, but she is a special one to us.

I don’t know that our story is one of spiritual triumph and I don’t know that we are the best examples of strong faith, but I do know we see more of Christ each day through the examples of others. Our experience with cancer has created holes in our hearts, but it has also surrounded us with beautiful people. People that give of themselves freely and work tirelessly to do good in the face of the evil in our world. People with big hearts, unyielding compassion, glowing empathy, and focused ambition to save lives. These people, these angels, are God’s gift to us in this trying time and they have forever changed our perspective on the world. We are forever in their debt.

“The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship. And by him we cry, “Abba, Father.” The Spirit himself testifies with our spirit that we are God’s children. Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.” – Roman 8:15-17

Even When It Hurts

“You are my God; have mercy on me, Lord, for I call to you all day long. Bring joy to your servant, Lord, for I put my trust in you.” – Psalm 86:3-4

Some of the most powerful passages in the Bible, the ones that speak volumes in the fewest sentences, are the Psalms. Why? Because they are real stories about life. They are incredibly emotionally-charged, and they speak to our human nature. They are songs written as an outcry to God, asking for forgiveness, for salvation, and in a few instances, for a reprieve from the Psalmist’s anguish.

Anguish is a complicated emotion and one that until recently I had never experienced. Anguish is a deep-seated, humbling, devastating, overwhelming suffering. It’s an emotion that settles into your being, it engulfs you, angers you, crushes you, it injures your spirit. Anguish is so much more than sadness because it consumes you, it forever changes you and it can cripple you. To be in anguish means to be constantly tormented and tortured by the circumstances of your life.

I know anguish because I must sit and watch as Hazel marches forward in this horrific, painful journey toward healing. I suffer because Hazel suffers and I will forever be tormented by the images of what she has had to experience during her battle. But tonight, as most nights, I calm my heart and let the tears stream down my cheeks as I listen to a song that has become my anthem, my life ballad, my ψαλμοί psalmoi.

Even When It Hurts is a song written by Joel Houston and performed by Hillsong United. The words of the song are powerful, but the performance is what charges me. Taya Smith portrays through her voice and actions all the convoluted feelings that are conjured up by anguish. Sometimes you whisper because you are beaten, sometimes you scream in sheer frustration, and sometimes you barely breathe because you are in awe of the magnitude of our God and Creator.

Lord, I have lifted so many prayers. Prayers of grief, of sorrow, of anguish. I have begged and pleaded, imploring for you to take this burden from me, from us, from her. I have screamed in frustration, I have wept, I have fallen headlong at your feet. Through my prayers, your answer has been gentle, but strong. I hear it, I may not understand it, but I will honor it.

Lord I pray that today, tomorrow, and forever, even when it hurts, I will continue to praise You.

Below are the lyrics to the song and video is linked above.

Even When It Hurts

Take this fainted heart

Take these tainted hands

Wash me in your love

Come like grace again

Even when my strength is lost

I'll praise you

Even when I have no song

I'll praise you

Even when it's hard to find the words

Louder then I'll sing your praise

I will only sing your praise

Take this mountain weight

Take these ocean tears

Hold me through the trial

Come like hope again

Even when the fight seems lost

I'll praise you

Even when it hurts like hell

I'll praise you

Even when it makes no sense to sing

Louder then I'll sing your praise

I will only sing your praise

And my heart burns only for you

You are all you are all I want

And my soul waits only for you

And I will sing till the morning has come

Lord my heart burns only for you

You are all you are all I want

And my soul waits only for you

And I will sing till the miracle comes

I will only sing your praise

Even when the morning comes

I'll praise you

Even when the fight is won

I'll praise you

Even when my time on earth is done

Louder then I'll sing your praise

I will only sing your praise

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