Stealing Courage

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ― Lao Tzu”

I used to identify the word courage with images of soldiers charging onto the battlefield or astronauts launching into the deepest unknown of space. I romanticized the word to be an attribute of heroes; of explorers and pioneers that found new worlds. Courage was a word reserved for voyagers crossing the ocean or for airplane pilots testing the outer limits of their equipment’s capabilities. Courage was not something I needed for my every day, “normal” life. I certainly didn’t need to be courageous in the small town of Marietta, Ohio. Until now.

Hazel has had a great week. Her blood counts were up at our last visit and she has pretty much cleared all of the high power steroids from her system so that means fewer mood swings and back to normal eating habits. It also means that some of the strength she had originally lost in her leg muscles is returning, which allows her to walk freely around the house, playing with toys and interacting with her siblings. The general mood in my household has been one of happiness, contentment, and dare I say, joy. It almost seems normal.

And yet, there is always the unstated understanding that things aren’t normal. We still dose Hazel with up to six types of medicine 2-3 times per day, some of which we are not even allowed to touch without wearing gloves. The chemo drugs Hazel is currently on tighten her calf muscles and tendons, which makes it difficult for her to balance and near impossible for her to squat down. She has lost all but a tuft of her beautiful red hair and the doctors want us to be prepared for even that to fall out shortly. Things are anything but normal really, but we charge on, soaking up every giggle, every smile, every happy moment we can find.

Living with cancer can make you feel a range of emotions every single day and sometimes all within a single minute. As Hazel toddles around our living room, happily playing with dolls, coloring books, and playdough, it’s easy to allow myself to feel like nothing is wrong; like Hazel battled this disease and won and now it is smooth sailing. But deep in the recesses of my mind I know that we still have a long road ahead. I know that she still will be receiving several rounds of chemo over the next several months that will beat her immune system back down. I know her counts will drop, more side effects will come, and there will be days that are once again filled with sadness.

My heart aches thinking about those days; I yearn for an answer for my baby girl that does not include more pain, more surgical procedures, and more hospital visits. Logically, I can justify all that is happening right now because I know it is saving her life, but my heart breaks knowing that she is being robbed of precious moments of childhood that she will never get back; innocence that she will never recover.

Our future is an unknown. There is no telling how Hazel will continue to respond or what side effects she will experience. I cannot tell you with certainty what tomorrow looks like, let alone two, five, or ten years into the future. That crushes me. I am brought to my knees in anguish every day by new ways this disease has touched our life and my family. Cancer is sneaky. Insidious in ways you would never imagine.  It winds its way into every aspect of your life like a tree root looking for water, snaking through even the smallest crack in the foundation that you felt was so strong before.

And that’s how it breaks you. Slowly, over time, patiently tearing away at all you hold dear, all that is close to you. Every time you think that you have closed up a crack, a new one somewhere else in your life opens up. It feels like all you can do is try to keep your head above water some days. Other days you are happy, but then you wonder, should you REALLY be happy? What are you forgetting? What new crack has opened up?

Cancer is awful and I hate. I hate it so much for what it has done to my family. Cancer burdens my heart like nothing I have ever experienced. I lay awake at night wondering what life will look like after this. What will my children’s lives be like? How has this affected them mentally, emotionally? What about our own parents, our own siblings? What is our struggle doing to them? How many years has this pain taken off of my own life? Elizabeth’s life? And then I think of Hazel…oh, Hazel. I no longer cry over Hazel’s experience, I weep. To weep is a more powerful, deeper experience than to simply “cry”. To weep is to mourn, to feel every aspect of sorrow as the tears fall from your face. It is to sob, tremble, and exude the emotion that your mind is incapable of comprehending at the time.

Cancer has stolen many things from me, but I will fight back. I will take from cancer too. One thing I have taken from cancer is courage. I know now that I live with a band of heroes. We all suffer in our own ways, we all fear what is unknown, but we press on. That is courage. Courage is continuing to do what you must, even if the circumstances are horrible. Courage is not being terrified by the odds because they don’t matter anyway. What matters is what is right in front of you.

Courage is not only found on the battlefield or in deep space. Courage is everywhere that I am. It surrounds me. I see it every day. It is within the four walls of my home as we wake each morning, pack lunches, and head for the school drop off line. Courage is my children explaining to friends that they can’t have visitors because Hazel’s immune system can’t even fight off the common cold. Courage is my wife, lovingly holding my little redheaded daughter each time they access her port, each time they take blood, and each time she is put under anesthesia for yet another procedure. Courage is watching cousins playing together as if nothing is different. Courage is having grandparents that are there every step of this journey, comforting, loving, suffering alongside us.

I can’t tell you what is next for my family. I truly don’t know. There are problems every day that come up that we were not prepared for, but we manage. We manage and we thrive. With each positive report, each giggle, each smile, our courage grows. We stand together, shoulder to shoulder, as much holding one another up as forming a wall of protection around Hazel. Some day we may be able to let our guard down, but for now, we remain, Hazel’s courageous few.

“…Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” – Joshua 1:9

Breathing It All In

I close my eyes and feel the cool, wet kiss of the tears as they stream down the sides of my cheeks and run into my beard. For the first time in what seems like forever, I breathe in deep and long and can smell…soap…and water…a hint of lavender. The smell of clean. The smell of fresh. The smell of happiness. My nose is tickled by the light touch of airy wisps of red hair as they brush against my lower lip and Hazel’s warm body rhythmically sinks into mine as her deep breathing aligns with my own. She lay sleeping soundly on my chest, comfortable, at peace. In my world, in my new normal, this, this one snapshot of time, is perfection.

Today was my birthday, May 19^th, 2017, just over a month from the day that my world was completely turned upside down. A lot has changed in 33 days, so much in fact that I had basically forgotten that I even had a birthday coming up. It didn’t seem to matter that much anyway. Celebrating my turning 34 seemed pretty stupid to me when my baby girl was fighting just to be able to see her 3^rd birthday. But there was significance to this day that will forever be etched in my memory, and it has nothing to do with candles on a cake or wrapping paper. In the afternoon of May 19, 2017, I received the news that Hazel’s blood, spinal fluid, and bone marrow aspiration had come back negative for overt signs of Leukemia. She is on the road to remission.

Earlier this week Hazel had undergone a very specific test called MRD evaluation, the results of which were supposed to be available by Friday. These results would determine Hazel’s treatment path moving forward and would also tell us how her body had responded to the chemo treatments thus far.

Sidebar:   I have thus far stayed pretty far away from numbers and medical facts in my blog posts for a couple different reasons.

Number one, Leukemia is a complicated disease and there is a ton of information already available that I would add nothing to by writing about it. Sometime when you have an extra hour or eight, ask me about it and I would be happy to share. Otherwise, if you are interested in reading about Leukemia, a good place to start is here: http://www.nationwidechildrens.org/leukemia and the rabbit hole only gets deeper from there.

Number two, I have spent most of my time in the past month simply trying to process the emotions and changes that myself and my family are going through. Every single day, I kid you not, every one, is a mess. Our life right now is a surprising casserole of normal, everyday activities, with short bursts of happiness and joy that always seem to be skirting the brink of total disaster and dismay. Trying to manage the chaos of a family of six is challenging enough, but it becomes a special type of miracle when one of your littles is dealing with a blood cancer. My writings thus far have really been an escape more than an informative venture.

With all that being said, I feel that this post deserves some actual scientific backing to accentuate the importance of recent happenings for our little Hazel. I have spent considerable time reading the research that Hazel’s treatment is based on. I go to bed reading riveting copies of Nature, Blood Journal, Leukemia Journal, and the annals of Children’s Oncology Group.  Yes, I know I am neurotic, but buckle up and prepare to get nerdy; it’s time for some numbers.

MRD stands for minimal residual disease and is a term used to describe the minute amount of Leukemia cells that are still present in a patient’s body after receiving the initial courses of chemo that clear the blood and spinal fluid of diseased cells. Basically, MRD is a measure of the last of the last Leukemia cells left standing. Obviously, you want MRD test results to come back negative because it is indicative of being completely disease-free, right? Sort of, but not exactly. Let’s back up a bit.

As early as 15 years ago, Leukemia was considered by many to be a 100% fatal cancer, not immediately, but eventually. Many patients would undergo rounds of chemo treatments, achieve remission, then relapse numerous times and eventually succumb to the disease. The cause of the relapses was unknown until a new test, MRD, was developed to show that even though a patient could achieve remission of Leukemia in blood and spinal fluid, a very small number of diseased cells could still exist in the bone marrow. If chemo treatments stopped as soon as the blood and spinal fluid were clear, the small number of cells left in the bone marrow could recover and grow stronger, chemo-resistant Leukemia cells that made further treatments after relapse increasingly less successful.

MRD testing revolutionized the way certain types of cancers, and in particular Leukemia, were treated. MRD results now allow doctors to gauge how well a patient responded to initial chemo treatments by comparing the percentage of cancerous cells in a 10,000 to 100,000 cell sample. The lower the ratio of cancerous cells to healthy cells, the better response to the treatment regime. Doctors now know by looking at MRD results how much MORE chemo is required to completely eradicate all cancerous cells from a patient’s body. In other words, a lower MRD requires less intense treatment than a higher MRD to achieve “cured” status.

That explanation is the simple version. The complicated version involves understanding that MRD can be measured by a variety of test types such as flow cytometry, PCR based RNA and DNA sequence identification, and patient specific immunophenotyping. Each type of test provides a different level of accuracy and they do not all correspond with one another. Furthermore, different research groups use different thresholds and timelines to assign treatment and thereby an MRD negative result for St. Jude’s treatment protocols does not directly correlate to MRD negative results in Children’s Oncology Group protocols.

That may all seem confusing at first glance, but believe me I have spent some time perusing the details. I know the numbers. I know the percentages. I know the chances. Why? Because I needed to know what to root for. I needed to know on a scale of 1 to Holy Crap, how worried I needed to be when I heard test results come in. In a time of our life when I have zero control over any aspect of the outcome and we are awash in an undulating sea of emotion, I at least needed a map to find my way around the facts.

For example, I know that Hazel’s treatment is based on the Children’s Oncology Induction protocol that calls for less than 0.01% MRD status in bone marrow aspirate taken on Day 29 of treatment to be considered “Standard Risk”. What does that mean? It means that she is now in the group that in prior 5-year studies have shown a 93% chance of having a 0% recurrence value over the study period. It means that right now, her bone marrow only has 0.008% cancerous cells or 8 Leukemia cells out of 100,000 healthy cells. It means she is winning. It means she has a very good chance at leaving this all behind her.

It also means I get more chances to see her grow up, my family has more chances to breathe sighs of relief, and the world has more chances to experience Hazel’s impact as she grows into the strong, passionate woman I know she will be.

Childhood cancer has taught me many things over this past month, many of which I never wanted to know. However, good things have come of my experience too. I have learned our emotions can be so much deeper and richer than I ever imagined. In my first post I wrote of the spirit-crushing pain I experienced at Hazel’s diagnosis. That pain has never left completely. It’s lessened at times, but it is not gone and maybe it never will be, but also, maybe it never should be either. The pain reminds us of where we have come from, what we have gone through. It allows the moments of joy, the glimpses of happiness to permeate our being, to tap directly into our soul. It reignites an appetite for empathy, compassion, and an unwavering search for the truth.

The pain I feel for my daughter during this time of trial in our life can only approximate what God must have felt for Jesus as he was led to the cross to die. That was his son, his child he had watched grow from a tiny babe into a powerful man that was to lead a revolution and save the world from sin. Yet he was forced to watch him suffer immeasurable pain and be killed in one of the most barbaric ways known to man. God knew the outcome of that suffering was to be for a far greater purpose than any mortal could ever imagine.

I know that Hazel’s fight is serving a greater purpose. I know that her outcome will far outweigh the pain she has to endure on the way to that outcome. I may not know what all of this means right now or why we are experiencing it, but I do know that whatever the road ahead may look like, that God has Hazel in his hands.

For now, that’s good enough for me, as I choose to lie back, close my eyes, and breathe it all in.

“Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with my righteous right hand.” – Isaiah 41:10

Why and How (aka Cancer Sucks)

“He who has a why to live can bear almost any how.” – Fredrick Nietzsche

It has been a while since I posted my last blog. I attribute this lapse mainly to our return home and to a quasi-normal state with our kids, the house, my job, life in general. I also usually wait to write until I “need” to, until I feel a topic has been laid on my heart and the words seem to basically write themselves for me, essentially pouring out in a flow that if, left bottled up, would surely explode in some other less healthy and less therapeutic way than writing.

During our latest clinic visit, we had a conversation with the psychologist assigned to our family (On a side note: I hope some day to be able to write about the amazing team that Children’s has put together for Hazel. The breadth of the experience and resources offered to each family that visits this facility is truly monumental and we have developed relationships that will last over the course of our lives.). In that conversation, she made a statement that immediately struck me and has stuck in my mind ever since. We were discussing daily life and how we all were adjusting to being back home, having our family together, and getting into the swing of activities outside of the hospital when she said “Well this experience will forever change you, your kids, and Hazel. Not necessarily in a bad way, but you can’t go through this without being changed. It’s inevitable.”

It may not seem so, but that is a truly profound statement. Relatively few people that walk the face of this earth have a “before” and “after” experience. An experience outside of their control that, in no uncertain terms, changes the course of their lives forever. An experience that doesn’t just affect one area of everyday life, but shapes every aspect of a person’s very existence, even if in just minor ways. Cancer is that experience for my family.

Cancer sucks. If cancer were a person, I would find him/her and fight them to the death in the street. I would fight dirty too. Morals wouldn’t be an issue at that point. Cancer came after my baby girl, a precious innocent soul that has not even had a chance to experience some of the best parts of life yet. It changed her, robbed her of time spent with me, her mother, her siblings, and her extended family. Cancer made her feel pain she should never have to experience. It made her feel isolated and different at a time in her life that should be nothing but happiness, love and freedom.

Yet somehow, all of that isn’t even the worst part about it. The worst part is, cancer makes me watch. I have to watch as my vibrant young child becomes frail, loses her hair, and becomes so weak that she cannot walk upstairs. I have to watch as she has painful medical procedures, gets blood taken, and receives medicines so powerful that under any other circumstances they would be considered poison. I have to watch as she stares sadly after her brothers and sister as they attend birthday parties, ride bicycles, and play in the dirt while she is quarantined to our home. I have to watch as she cries, not because of anything in particular, but just because she knows this isn’t her normal life.

I know that all of this is necessary, that she will get better, become strong again and will be able to do the things that she loves. That doesn’t make me hate cancer any less. I hate cancer for her, I hate it for us, I hate it for the kids that we see each week we attend clinic. I hate cancer because cancer isn’t fair. It fights dirty. It attacks the ones we don’t expect. It attacks the ones that don’t deserve it. I hate cancer because I have no control over it and it takes good people away from those they love.

Our life has returned to a somewhat normal state. We are home, going to dance practice, birthday parties, skating parties, and school. We have family meals again, we sleep under the same roof. We enjoy movies all piled on the couch, our kids play with one another and our house is filled with giggles, and laughter and the pitter patter of little feet. But despite all of that normalcy, I cannot help but realize that some of it is simply a façade. My family now lives with an unwelcome house guest that at any point could create terrible upheaval in our lives again. We are reminded of this guest as we find small tufts of red hair on the couch or as we gingerly tiptoe around Hazel as she is walking to avoid throwing her delicate balance off and hurting her. Cancer entered our lives by force and we don’t like it.

This process does change you. It has changed us. This isn’t a cold or the flu, this is cancer. My life is happy, my little girl is regaining strength and each day we see more and more of the old Hazel return. My family is together, our friends have surrounded us in prayer and love, and we have begun rebuilding our life. Life truly is good.

But that life, our life, will never be the same again. Hazel may forget this experience as she ages and I pray to God that she does, but I will not. Never again will I wake up in the morning and NOT have a lump in my throat at the possibility that her cancer has returned. That fear will never, ever go away. It may fade and ongoing medical tests may prove that she is cancer-free, but for the remainder of my days I will remember that at one point there was cancer in my life. Cancer tried to take my little girl.

Each day is precious, but each day can be a struggle. Before Elizabeth and I go to sleep each night, as we are laying in our bed, listening to the soft night sounds of our little ones as they dance through dreamland, we always say “Today was a good day.” We are always totally exhausted and emotionally spent – a tiredness like none I have ever known before, but we never forget to say that phrase. Right now in this time of total dissention in our normal, it is vitally important to us that we remember each day is still a good day, a lovely day with our girl. Hazel is our why, and the how right now doesn’t matter.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isaiah 41:10