A Family's Life After The Diagnosis
A mom shares her insight from her child’s fight against cancer
In my first article, I introduced you to our family and described the first few years of our daughter’s treatment for leukemia. On her last day of treatment, August 29, 2011, doctors discovered that leukemia had relapsed in Tatum’s cerebral spinal fluid. Here, I want to focus on our life after her relapse and specifically how we kept our marriage strong. Statistics show that the odds of a marriage ending in divorce when the parents have a sick child can be as high as 80 percent. These are daunting numbers, but many couples can remain together and even grow stronger as they care for their critically ill child.
Following the news of Tatum’s relapse, Michael and I quickly learned more about what we were facing. Mercifully, the leukemia was isolated in Tatum’s CSF and she would not need a bone marrow transplant. But her new two-year treatment plan would be exponentially harder than what she had already endured. She would immediately be placed back on high dose steroids. She was scheduled for two 28 day periods, one 21 day stretch and many short “pulses” in between. The side effects of long-term steroids are extremely difficult and we could not fathom this. The list of chemotherapy drugs was also overwhelming. Some were familiar to us, but others were new and held the possibility of harsh side effects. And then the word radiation stung our ears. Late in her treatment plan, Tatum would be fitted for a mask and receive 12 doses of radiation to her brain.
One moment at a time. Breathe. No negative air. Look outward. Pray. What had we learned? We were dazed and unsure how to proceed. Yet we knew we had to focus hard and dig even deeper into our reserves of strength and faith. We had to find our center again, and quickly. We’d come to the medical center that morning for a simple, outpatient procedure and by that afternoon Tatum was moved upstairs to a hospital room. We had so many decisions to make. Where would we stay that evening? How long would Tatum be inpatient? What about school for Olivia and work for Michael? We didn’t even have a change of clothes or a toothbrush. Even the smallest choices seemed monumental.
Temporary relief came quickly. A social worker stopped by and told us she had reserved our family a room at the nearby Ronald McDonald House. We knew about this place. But, the Ronald McDonald House was for families stranded far away from home in dire situations. Suddenly the reality hit us hard; we were a family in crisis who needed a safe place to land. So, that very evening, miles from home, we moved into a strange new house. Olivia and I stayed together that first night and tried to find our bearings, with Michael and Tatum just hundreds of feet away resting to the sound of hospital monitors and busy night shift nurses watching over them.
More BIG changes
One of the facets of Tatum’s relapse plan included multiple inpatient stays at Cook Children's Medical Center. This meant our family would either be constantly on the road or separated a great deal of the time. After processing the intensity of her new treatment schedule, Michael held my hands and wisely said “Mandy, we need to move to Fort Worth.” I was shocked. These were hard, hard words to hear, yet I knew he was absolutely right. Our family had bonded in ways we couldn’t have imagined before Tatum’s illness. We didn’t want to be separated and we refused to ship Olivia off to be cared for by others. We would find a way to move and there was no further discussion.
Change was happening at lightning speed and there was no time to grieve or process the loss of our home and community in Abilene. Our immediate focus was on Tatum and getting settled in Fort Worth. We needed help. Loads of it. We had to sell our house in Abilene and find a place to live in Fort Worth. We would have to pack our home and somehow get our things moved. We had pets to care for. It was now September; Olivia needed to be in school and we still didn’t have a physical address. Thankfully, Michael’s work offered him an emergency transfer and he had a new job waiting. As the offers of love and support came pouring in, they felt both reassuring and strange to sort through. A dear friend of mine sensed our resistance and firmly spoke truth into my ears. “Mandy, you need to learn to be a gracious receiver. We want to help and it is good for us to give. Now, let us.”
Accepting help was hard. Immensely respectful of each other, the word “partners” is inscribed inside Michael’s gold wedding band. For better or worse, that singular word describes our relationship. But as strong as we were together, we knew we needed to release our independence a bit and allow others in. The support, prayers and acts of love we received in the early days of our move to Fort Worth are hard to adequately describe. Our needs were simply met. Our friends packed every inch of our home and helped us sell everything we left behind. We found an apartment near the hospital to live in. Our mortgage was paid until our house sold. We found a wonderful school nearby for Olivia. Our kitties were lovingly brought to us. Medical bills were piling up, but we were blessed with monetary gifts that helped tremendously. And, God brought new people into our lives that we literally could not have survived without.
Yet, the hardest days of Tatum’s treatment were reserved for Michael and me to conquer together. When Tatum was in the hospital, we made a decision to limit visits from family and friends. She didn’t always feel good and mostly just wanted us with her. So, as difficult as it was, Michael and I took every single inpatient shift. Together, we established a rhythm that worked and fell into a new flow of life; splitting time and sharing days and nights with our daughters. Olivia and Tatum were best friends and didn’t know life apart from each other so we made sure they had ample time together. We fiercely loved and protected our foursome. And as time moved on, we slowly adjusted to our new spaces: hospital, work, school and home.
There was one more space: a sacred breezeway at the medical center where Michael and I would often meet during inpatient stays. In the early hours of morning after a long night shift, Michael would have a volunteer sit with Tatum for a few moments as he left for the day. From the opposite direction, I would walk towards him; two large steaming cups of coffee in hand. We’d usually share a long, silent hug before sitting down on one of the benches outside to talk. These moments were often the only time we’d have together in a long string of blurry days. He would update me on Tatum’s care and rarely complained of the loss of sleep, though I knew he was bone tired. I would share how my evening with Olivia had gone. Often we would just sit and watch the sun rise; silently praying for a good day.
And then we were off. I would head upstairs for a 12-hour shift with Tatum and Michael would run home to shower, go to work and pick up Olivia after school. He would always bring Olivia for an evening visit with Tatum and then we would switch shifts again. Repeat. Repeat. Repeat. I marvel at how we did this for so long. Yet, these split shifts allowed us such meaningful one-on-one time with our girls that we look back and remain so thankful for. What other circumstances in life would have allowed us 12 hours with each child, over and over and over again? And: Tatum’s memory of those long hospital stays remains wrapped up in one unbelievable question; “but, that was fun, right?”
Yes, darling. Excruciating, maddening, magical fun.
When I think back upon these years and how we maintained our relationship, I am certain there isn’t one correct way to deal with the stress of caring for a critically ill child. For us, it was important to allow each other physical and emotional freedom to exist individually. There has always been an unspoken ease in our relationship and we encouraged each other to take time to step away and do things we enjoyed. Sometimes we had to literally push each other out the door to take a break. But we desperately needed exercise, nature, music, good friends to talk with and sometimes just silence away from the fray. We also had to work hard to carve out time to spend together, to go on dates and talk. Yet, these intentional gifts of time and love fueled us and helped us step back into the fight. And taking care of ourselves helped us to be better caregivers for Tatum. Of course, our friends and family visited when Tatum was home and feeling better and these visits were life giving to us. But in the trenches it was Michael and Mandy; caring for each other and for our girls the best we could.
Summary: Keeping your relationship afloat in the storm:
Do what you can each day to make your partner’s path easier. Unselfishly, pave the way for them to succeed and feel confidence and joy.
Spend time together as a couple. The money spent on a sitter is an investment in your relationship. Try not to always talk about the situation of having a sick child. Always find moments to laugh together.
Freely give each other the gift of time away with no strings attached. Encourage each other’s hobbies and interests.
Be a united front with anyone who challenge your boundaries. Offer no apologies or excuses for the decisions you make. As a couple, you are fully charged with your child’s care and you know what’s best. No negative air allowed. Period.
Be respectful of each other and guard your relationship above all others. Be on the side of your partner, even if you don’t always agree.
We realize that in some ways, our situation was unique. Not everyone has a supportive group around them to offer help, money, time and prayer. Very few have jobs that will allow a transfer or help them relocate to a new city to be near their sick child. During Tatum’s years of treatment, we met many families who were separated between cities, single mothers alone with their children and some children with no parents present at all. These families had very few resources to manage the stress and strain a pediatric cancer diagnosis brings. May we all be humbled and aware of those around us who need extra time, money, compassion and love. And may we freely give as we have been given!
Nearing the end (again)
Battle worn and scarred, Tatum’s years of relapse treatment were some of the hardest of our lives. Her physical body was pushed to limits we almost couldn’t bear and many days we wondered how we would survive. But our mighty Tatum endured with force. With the help of an extra special homebound teacher, she managed to complete kindergarten, first and second grades with only four hours of school each week. She learned to read and excelled at art. She took walks and rode her bike when she was strong enough. She enjoyed short visits from friends and family. But mostly, she spent hours and hours at home in her own small world of play on the floor. Her imagination soared. She was just Tatum, showing us how to live in her own sweet, quiet space. Upon reflection, her Spirit carried us all.
And when the time came, Tatum faced radiation treatment with more bravery than we could have ever imagined. As her favorite spiritual hymns played in the background, she lay very still to be fitted for a special mask. When it was time to leave her, my eyes blurred with tears as the nurses closed a very thick wall between us; for our protection. Our child lay separated from us on the other side of an enormous slab of concrete; peacefully unaware that she lay simultaneously in a dangerous and life-giving space. For 12 agonizing days, Tatum obediently remained still for her radiation treatments. And after each session she came out smiling with her tiny hand-knitted owl cap on her head; ready for the rest of the day. There are times in life when your soul can utter no words. Your broken Spirit simply groans and grieves. I am certain we were being carried through that space by the Grace of God alone.
Another last day
On Nov. 1, 2013, our anxiety was high as we woke up early and prepared Tatum for another ‘last day.’ She was scheduled for chemo and one final spinal procedure. Her sense of humor disarmed us, however, as she asked me to write a message to Dr. Heym on her back in black sharpie. She scrunched up her face and said “I want you to write ‘stop poking me!’ This is his last chance, mom.” And, as he raised her shirt to begin the procedure, he laughed out loud and snapped a few pictures. Tatum also asked him to wear a pink tutu on her last day, to which he of course obliged.
Later that day, she received her last dose of chemo in the infusion center; a room still filled with brave and beautiful children. My heart was painfully aware that some of these kids would not have a ‘last day of treatment.’ So after her chemo was finished, there were no big cheers or bells for Tatum to ring. We just tightly hugged her nurse, shared a few happy tears and quietly walked out. A phone call came later that evening. Her spinal fluid was clear.
Stronger than Yesterday
As a family, walking with Tatum through her years of treatment remains our greatest achievement. Each of us has our own memories and scars. Our tears could fill bottles. Still, we carry it all with us. You see, when you face a cancer diagnosis, endure treatment and even if you have a ‘last day,’ there is no end. The fear never leaves you. The memories fade but still sting when triggered. Our girls are growing strong and fast, yet we all still experience moments of post-traumatic-stress-disorder. It’s very real.
In one of the most beautiful passages in A Farwell to Arms, Hemingway writes about how harsh and cruel the world can be. Eventually, it breaks everyone. “Afterward,” he says, “many are strong at the broken places.” Yes. We are definitely stronger at our broken places; wiser and more empathetic to the suffering of others. And we choose to believe. Not in perfect, happy endings tied up with ribbons, but in a much Higher plan. One that is greater than what we could have ever created for ourselves. At some point during Tatum’s relapse years, my constant prayer changed from “Save her,” to “Thy will, not mine, be done.” And with that shift, immense peace came.
The relationship between suffering and joy remains a mystery to me, yet I have learned to anticipate and accept them both. There is a Japanese phrase my mother shared with me years ago after my dad passed away; words of truth that I meditated upon during Tatum’s illness and treatment and remember still:
Shikata ga nai: Accept what is dealt, deal with it, and move on.
Shikata ga nai in its deepest essence means letting go. And when you let go of something not meant for you to carry, you find relief. For our family, it reflects the beautiful, God given ability to maintain dignity in the face of an unavoidable tragedy or injustice, especially when circumstances are beyond your control. This is what we did. We lived and breathed this story and are now moving forward, holding onto our hope with a tight fist; and to our belief that, for today, Tatum is healed.
And that is more than enough.
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 informaton regarding today's post, visit the following:
- 5 Lessons This Mom Learned After Her Daughter's Leukemia Diagnosis
- Cook Children's Hematology and Oncology Center
- Leukemia and Lymphoma
- Acute Lymphoblastic Leukemia (ALL)
- Get to know Kenneth Heym, M.D.