I find myself on the EVE of our 2 year anniversary of Emmy’s Diagnosis day reflecting on what this journey has been like for each of us. I’ve spent a lot of time reflecting on it before and shared much of it during a fundraiser speech I gave a few months back. Tonight as I re-read it again and spent more time processing through it, I realized that, well, the words were mostly all there. So, here is what the past two years have been like and where we find ourselves today:
Every lens through which we view life shifted when we heard the words, “your daughter has Acute Lymphoblastic Leukemia.”
If you are anything like me, you have probably thought, “something like this could never happen to us.” And, yet, childhood cancer happens to unsuspecting families every day. Mine included.
And, truly, it changed everything.
See, you don’t get to leave your new cancer reality behind when you finally get released from the hospital following diagnosis.
Or, when you leave clinic for the day after your daughter receives her treatment.
Or, when you hit the milestone marker of “maintenance,” the treatment phase she is currently undergoing.
You don’t get to leave it behind, because it goes with you everywhere -- every day and every night.
As we first listened to the diagnosis, I watched as my husband’s face turned white. He had just accepted a new job — actually, a new career path altogether — officially 2 days before. He and I sat on a hospital bed, staring at our sleeping daughter as IVs administered chemotherapy along with a slew of other drugs designed to destroy cancer cells.
In that moment, despite all the fear, the only thing that mattered was seeing that our daughter made it through. But, as the provider of our family, my husband had to figure out how to balance our new realities.
I watched as he woke up early and stayed up all hours of the night so he could learn what he needed to for his new job and still be there during the day to hold our daughter and comfort her as yet another needle poked her little body or calm her during another outburst she would experience caused by the high dose of steroids. He worked hard to keep things back at home as normal as possible for our other kids.
As a result, he has lost friendships and let go of many hobbies and creative outlets. All of his time and energy goes to supporting his family and keeping his job afloat as the medical bills continue to roll in.
Even to this day, he continues to balance our monthly clinic visits with his work schedule to ensure that all of our family needs are taken care of first.
We have three other children and those precious babies had their world turned upside down. Their mom and sister left for the emergency room that November day in the middle of naptime and when they woke they realized mom and sis weren’t returning that night.
For siblings, a cancer diagnosis means sacrificing time with your parents. It means learning to juggle hospital life and home life.
After the diagnosis, Addie, Maisy, and Gray got to visit Emmy’s hospital room. What they saw was their sister lying in a bed with machines and IV lines coming out of her body.
It was an unexpected medical education at the ages of 2 and 4.
They learned the harsh reality of isolation, as their sister now had a compromised immune system.
This means trading play dates with friends for roaming hospital halls and playing with the toys found in their sister’s hospital room.
It means letting go of my well-made plans of sending my son to a magnificent school for Kindergarten. Because when one of the worst flu seasons in recent years strikes, the risk of him bringing something home to his sister was just too high. Fatally high. So, his home education began.
It means that the outdoor birthday party that I told my kids they could attend is suddenly a no-go. Because a friend called me to tell me that one of the kids attending has come down with the common cold. I can’t expose Emmy to the common cold. It is truly life threatening for her.
My kids used to ask, “where are we going, today?” with excitement. Now? Now, that question has faded because they understand that “as soon as Emmy is done fighting her buggies, rings her bell, and gets her port out,” we can have play dates again, trips to the mountains, lakes, rivers, and beaches, and other activities they love like bounce houses and children’s museums.
You see, the day is coming when we can do these things because a fever will not mean an automatic trip to the ER, resulting in pokes, blood cultures, antibiotics, the potential for overnight hospital stays, or even more worst-case scenarios.
Through it all, my children have learned a new normal--one filled with beautiful empathy and compassion. But, make no mistake, this has come with a high cost and sacrifice.
On November 16, diagnosis day, I officially earned the title, “Momcologist,” a job description I never knew existed and most certainly one I would have never chosen for my resume.
I quickly found myself knowing more medical jargon than a tenured doctor, in a week long crash course.
There were nights, like the eve of chemotherapy, where I stayed up all night worrying and praying. Because the drug to be given to my daughter the next day is known to cause allergic reactions and comes with a high risk of anaphylactic shock. I knew the only way out, was through, and that my child must receive this drug in the morning but all I could do was pray for minimal side effects.
There were times that I had to physically wrap my entire body around my daughter, holding her still, while nurses tried to start another IV after the first two blew. Or laying her down again on a procedure table after she went fully limp with sedation on my shoulder, having to walk away, wait, and then return and comfort her through the metal rails of a hospital bed.
I have become a member of a group with the most incredible, beautiful, and strong people. Yet, still, it is a group that I never wanted to be a part of nor did any member of this new community.
I learned fast that many of my current friendships would fade away as a result of the intense isolation we live in. In addition to that most of my energy and patience had become depleted (hence sometimes coming across short, anti-social, or non charismatic to other people’s issues) and I wasn’t and still in many cases am not able to put effort into anything else but taking care of my family in isolation.
However, new friendships with moms who understand grief and trauma began to blossom, and blossom quickly. These friendships seem to go from 0-to-60, because we are painfully aware of how little time there is in this life for superficial, small talk. We are bonded—woven together—by our suffering. Its’ an unbreakable connection.
Then, there are the moments of gut-wrenching devastation and extreme guilt. One day, I ran into a familiar face from clinic at the grocery store. I asked her how her son was doing in treatment, only to learn that he did not make it.
I held her tight and we cried for quite a while in the frozen food aisle. I went home and fell to my knees, giving thanks for the blessing of my child still being alive yet crying out in anguish, guilt, and sorrow for those who have lost their everything in this fight.
I often wonder if my intense fear and the gnawing “what ifs” will ever go away. Especially as our anxieties rise at Emmy’s biweekly clinic visits when we have her blood counts checked.
I have come to realize that just because you are living out one of the biggest fears you have as a mother, you are not now suddenly exempt from any of the other potentially bad things that could happen to your family. It is a fear like no other because you just now know too much.
Today, 24 months later, I still find myself in the thick of it all. I long desperately for the end of January 2019, less than 70 days from now, when Emmy will get to ring the gold bell, signifying her completion of chemotherapy.
But, I know, as I stand there and watch this amazing thing happen, my fears won’t simply disappear. We have two other daughters who are identical triplets to their sister with cancer. They run a higher risk of being diagnosed and have to continue to be closely monitored.
Emmy will not be presumed cured until 5 years following her bell ringing. This walk has been minute-by-minute, hour-by-hour, day-by-day, and it will continue to be.
We have no idea what tomorrow holds, and this journey has made us so aware of the fragility of life, but we put our hope and trust in the one who holds ALL of our days!
So, we have tried to re-frame it. Instead of asking, “why us,” we ask, “why not us, where do we go from here, and how do we understand the meaning bestowed on us?” We simply take each day as it comes, but one thing is certain, we hope and pray that Emmy remains FOREVER in remission.
I have told you about Tigh, our other three children, and my own experience. What I haven’t told you yet is what this journey has been like for Emmy — the one directly on the receiving end.
This child has endured more in the last two years than most do in a lifetime.
She went from a sweet, fun, and spunky spirit of a child to one full of terror after so many needle sticks, blown IVs, and toxic medicine that caused vomiting and a whole list of other side effects. She experienced outbursts of anger and rage as steroids wrecked havoc on her little body and her words were not strong enough to express all that she felt.
I vividly remember the day her beautiful hair began to fall out in tufts. I retreated to the hospital bathroom to sob silently before wiping the tears from my face. I reentered her room with a smile, excitement in my voice and a new hat to show her. She was so excited to see the hat because she and I had shopped for a collection of pretty head accessories in preparation for this day.
We knew this day was coming and we wanted her to know that this day meant she was one step closer to the end of treatment.
As time passed and treatments continued, our scared and angry baby slowly transformed into a brave warrior. Today, she gets her port accessed without as much as a flinch. She holds out her arm for peripheral blood draws as if she were receiving a handful of candy. She now even does her own blood draws, port flushes, and then locks the port with heparin after being accessed.
At the age of 4, she knows all the names of her medications, what they are for, and when she should take them. She can tell you the terms of almost every single medical supply you see in clinic.
She confidently walks into clinic before the sun rises for her “invisible tattoo” (….a spinal tap) in which she receives her interthecal chemo every three months.
She receives steroid pulses for one week each month, and they still wreak havoc on her little body. Yet, she fights through it to keep up with her sisters as they dance and her brother as he jumps on the trampoline.
Today, she is a hero, schooled in endurance, strength, and perseverance.
I tell you all of this to help shed light on what it is really like to walk this road that we and others have and currently are walking.
I cannot tell you where we are today without walking you through where we have been the past two years.
Today, we are beyond thankful for our daughter’s every breath and that she is alive. Today, we are thankful that our 4 children are all here, getting to share life together and slowly experiencing days that resemble something of a normal childhood.
Today, we celebrate the little things that are really big things like Emmy’s first tangles or the first bow that will stay in her hair since it started growing back. Her first lost tooth, and each milestone that we at times feared we would never get to.
Today, we are thankful for the Lord sustaining Emmy, our other three precious children, and us (cause there were for real moments of complete exhaustion physically and mentally that left us wondering if we would make it this far). For our amazing family and friends who have carried the weight of this journey with us, interceded on our behalf, dreamed for us when it felt like we could not, and and helped us when we didn’t know how to move forward. For answering our prayer for an amazing hospital to receive treatment. WE are so thankful for the amazing doctor, nurses, and staff of Texas Children’s hospital and for their skills, knowledge, professional care, and dedication to getting our Emmy healthy.
Today, Tigh and I are not who we were two years ago, and that is a good thing. Petty problems that arise daily roll off our backs like water on a duck. We see the value a day brings and know how much can change in one single day. Today we are continuing to cling to each other, and God… know that each day we get to see our children experience life is a beautiful gift no matter how complicated or hard it is. We know that despite days being paralyzed by fear, you have to keep getting up and putting your feet on the ground, because at the end of the day THE ONLY WAY OUT IS THROUGH. And for all of this we are grateful.
So, really, where are we today? The only place you can be after two years of trauma and 67 days away from a bell ringing ceremony: HOPEFUL and FOREVER CHANGED.