5 Lessons This Mom Learned After Her Daughter's Leukemia Diagnosis

One of the greatest joys in life is becoming a parent. Babies bring vibrant life and wonder to the world around us and instantly reveal a much deeper capacity for love than we thought possible. Yet no matter how great our effort to help them grow and thrive, there are no guarantees.

With unconditional love comes vulnerability and parents have an overwhelming instinct to protect their children from harm. But it’s an impossible task. Joy and sorrow often walk hand in hand and kids are bound to experience loss, hurt and sadness in their lives. They’ll be left out, heartbroken and lost. And they can become physically or emotionally sick. Dark days will come and perhaps the greatest gift we can offer is our unwavering love, presence and support as they grow through hardship.

Our darkest day came on July 12, 2009. We were living in Abilene, Texas at the time and my husband Michael and I had nervously watched our youngest daughter, Tatum, weaken over the course of a few weeks. She seemed extra tired. She was pale and had a low fever that she couldn’t shake. Her little 3-year-old body started showing too many bruises to explain away by normal play. We finally couldn’t bear it any longer and late one Sunday evening we took her to the ER. Our instincts were right.

As the doctor stepped in to speak with us about her bloodwork; in an instant our world came crashing down. He told us that although he could not confirm for sure, it strongly looked like Tatum had leukemia. In that moment, there was a before and after. Life as we knew it ceased to exist. There is no parenting book or guide to prepare you for a pediatric cancer diagnosis. No one expects this. We were stunned and devastated. Broken to our core. And terrified of the unknown.

Tatum needed to be at Cook Children’s Medical Center as soon as possible. An ambulance was not an option as Tatum’s blood counts were dangerously low and the doctor informed us that the Cook Children’s Teddy Bear Transport team was already in preparation to come to Abilene and fly us to Fort Worth. As we waited, I remember stepping outside to catch my breath.

In that moment, I struggled to form words to pray. Why? Oh how can this be? My soul was broken beyond what I’d ever thought possible. My faith small and spiraling downward. “Save her” was all I could utter.

Looking up, the deep summer night sky was full of stars and time stood still as I finally let myself fall to my knees and cry. As I sat alone, a nurse came outside and wrapped her arm around my shoulders. “Most kids do well with a leukemia diagnosis, mom. Hang on.” It was the first glimmer of hope I had been given and I grasped onto her words tightly. I had to begin to believe in something I couldn’t yet see.

Before I knew it, Tatum and I were flying through that same sky, looking out the window at the stars while Michael had an agonizing drive alone to Fort Worth below us. Tatum had to be strapped to a gurney for the flight, so I was only allowed to rest my cheek near hers and hold her tiny hands. Mercifully, she was not scared. Her sweet spirit was peaceful and calm and watching her in those moments, I knew we had to follow her lead through this new space we were in. We could not let fear, statistics or numbers drive our actions or thoughts. Tatum was already teaching us.

Lesson One: Whatever lay ahead, we would face it together with Tatum leading the way. Our child was more than a set of stats or numbers. Her life had purpose and depth and we had to focus our eyes on her first.

The next day Michael and I were given her official diagnosis; ALL leukemia, Pre-B, standard risk. Her physician, Dr. Kenneth Heym, M.D., a pediatric hematologist-oncologist, did not mince words. Instead, he looked us directly in the eye and said “we know what this is and we know how to treat it. Your daughter has a great chance for a full recovery and we intend to see her through.” More hope.

His confidence, experience and tone literally breathed new life into our weary souls and gave us permission to believe. He gave us an overview of Tatum’s new two-and-a-half year treatment plan and with each word our heads spun at the enormity of it all. He then encouraged us to take a deep breath and focus on the induction phase: 28 days. That was enough. To process the entirety of what lay ahead was excruciatingly hard, so we didn’t try. Tatum was scheduled for surgery the next morning for bone marrow and spinal procedures and to have her port placed for chemotherapy. There was no turning back.

Lesson Two: Don’t look too far ahead. Each day was enough and sometimes even a single moment was all we could bear. Her illness afforded us so little control. Keeping our focus firmly rooted in the present proved to be a valuable tool for our family.

Thankfully, Tatum responded well to treatment. She achieved full remission on day 28 but she was far from done. Leukemia cells love to hide and jump around, causing relapse and research has shown a lengthy treatment frame is needed to keep any stray cancer cells at bay. We had a long road ahead, both figuratively and literally.

It’s a little over two hours from Abilene to Fort Worth and we did a lot of driving back and forth for her treatment needs. And we did our best to settle into our new life of medications, needles and isolation.

With Tatum’s compromised immune system we couldn’t be around many people, and certainly not children. Olivia, our oldest daughter, was 6 at the time and in first grade. One of the worst flu seasons was happening that fall and we made the tough decision to pull her from school to avoid any risk of germs being brought home to Tatum. To give up a school and friends she loved was a sacrifice for Olivia, but she didn’t complain. Her love for Tatum mattered more.

I also had to let go. Before Tatum was diagnosed, I was practicing as a marriage and family therapist but now my work had come to an instant halt. I had the difficult job of calling each client to either refer them or say goodbye. I was now full time mother, nurse, and first grade teacher. But with sacrifice comes immense reward. Michael and I knew the greatest thing we could ever do in our marriage and life together was to raise our girls well and help Tatum heal.

Lesson Three: We had to sacrifice and change our world in many ways. We did what we felt was best at the time for Tatum’s health. Trust yourself, don’t apologize for doing what you feel is right, and don’t allow any negative air into your space at all. We fiercely lived by this principle.

Over the next two years of treatment Tatum had multiple bone marrow aspirations, lumbar punctures, blood transfusions and endured loads of oral and IV chemotherapy. She’d go from having a round belly and “moon-face” from high dose steroids to skinny with no appetite at all. She had several high fevers that sent us to the ER and we spent many nights inpatient at our local hospital as she recovered. Her port was replaced after an infection. The next spring she lost what was left of her beautiful curls. She was unflappable as her daddy clipped her head. You see, leukemia and all its madness was never a barrier for Tatum. She continued to live, laugh, play and love everyone around her. Our home was a safe, calm sanctuary for her to thrive in, filled with her favorite people and things. Olivia became her best friend and truest playmate. We adopted two kittens who were such a comfort. We set up a playset in the backyard. We had chickens and a garden.

We allowed others to care for us as well, through small gifts, meals and prayer when we needed it most. Almost simultaneously life stood still and moved forward with force.

Lesson Four: Keep living in the midst of uncertainty. Don’t let circumstances paralyze you from enjoying life. Be thankful each day for a few things. Focus on others and allow them to care for you as well. Children are fantastic at this and we can learn so much from their example of zest for life.

The light at the end of the tunnel was shining brightly. Tatum’s last day of treatment was marked on the calendar with anticipation and hope. And after two hard years, we escaped to Colorado for a wonderful and healing family trip. We arrived home just in time to turn around the next day for Tatum’s last appointment in Fort Worth. We were excited as she prepared for her last spinal procedure and chemo. We talked with her doctors about port removal and long term follow-up care.

Survivorship.

As we waited in recovery with Tatum after her procedure, two doctors came into the room together. We knew what this meant and the hope we had briefly allowed to take over slowly disappeared as we saw their faces. Leukemia had relapsed in Tatum’s spinal fluid.

This news may have hit us harder than her initial diagnosis as there were no warning signs or symptoms. Every parent of a child with cancer thinks about relapse, but we were blindsided once again. With tears blurring our eyes we listened and tried to make sense of their words. But we were stronger than yesterday. Our renewed faith through our walk with Tatum had spotlighted our strength and resolve. We looked closely at Tatum. She was quietly watching us to determine what was happening and how to respond. She didn’t hesitate long before saying “mom, dad: let’s go. I want out of this room. Either we are going home or we are going upstairs. Let’s get a move on.” Dry your eyes. No pity parties. Movement. So we stood and each of us took one of her tiny hands and stepped forward ready and determined to begin again.

Lesson Five: Don’t put off a wonderful trip, date or moment with those you love. Do the fun things together; whether it’s a game of catch or a roller coaster ride. Each day is full of both promise and uncertainty. And when the unknown comes around again, don’t be held hostage by fear and self-pity. Allow yourself time to feel and process; but then point your arrow forward. And hold onto your hope with a tight fist.

About the Author

Mandy Flaming, LPC, LMFT, is a licensed professional counselor. She's a mother, wife and writer, who enjoys cooking great meals, strumming the banjo, running in Ryan Place and "voraciously reading most anything." Watch for more articles from Mandy detailing her family's life. 

For more information regarding today's blog, visit the following:

• Cook Children's Hematology and Oncology Center
• Leukemia and Lymphoma 
• Acute Lymphoblastic Leukemia (ALL)
• Get to know Kenneth Heym, M.D.