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