4 things I learned from my daughter’s Ewing’s sarcoma treatment

When my daughter Aaliyah was diagnosed with Ewing’s sarcoma in November 2016 at age 9, I was shattered, vacillating hourly between two nearly unspeakable fears: the fear that she would not survive, and the fear that during the last weeks or months of her life, she would suffer relentlessly.

Suddenly, thrust into a life I barely recognized, I struggled to navigate what moms who had gone before me kept assuring me would eventually become “a new normal.” I resisted that idea. The last thing I wanted was for life in a cancer hospital to be our new normal.

But time marched on, as it tends to do, and our family did develop a new normal. Eventually, it didn’t feel so difficult to breathe, to eat, to smile, to laugh. Here’s what I recommend to other parents ushering a child through cancer treatment.

Take care of yourself

In the beginning, this feels next to impossible. For the first several weeks, I could barely sleep, eat or remember to take a shower. Friends brought my favorite foods to the hospital, but most of it went to waste due to my nonexistent appetite. I tolerated orange juice, so I drank it constantly, figuring that at least I was getting calories and vitamin C. I lost nearly fifteen pounds before my appetite returned.

While I couldn’t physically nurture myself at first, I did tap into ways to nurture myself emotionally and spiritually. I spent time journaling, praying and sharing my heart online. I also had friends on standby to take my emotionally fragile phone calls at any hour of the night, whenever I found myself sleepless or panicked or overwhelmed.

Some days, though, nothing helped. On those days, I found a place to let myself cry. Sometimes, it was in my closet, my face scrunched into a pillow to muffle the sound. Other times, it was in my car in the hospital parking garage, windows sealed tight as I sobbed with an anguish known only to other parents who have faced a life-threatening illness with their child. Yes, those tears hurt. But they also healed.

So, hydrate. Eat when you can. Nurture your emotional and spiritual health. Your wellbeing will promote your child’s wellbeing.

Find your people and hang on tight

You will identify your people almost immediately. They are the ones who keep texting and calling and showing up — even when you don’t answer your phone, and you don’t text back, and all you do is cry when they do show up.

Let these people know what you need. Friends and family stocked our fridge with groceries, braved Houston traffic to bring our other kids for hospital visits, arranged for weekly house cleanings, provided meals for months on end, organized prayer chains, and gathered donations, cards and gifts. The people who position themselves in your life during this time and stay there really want to help, so give them opportunities!

Use the internet wisely

One night, I couldn’t sleep, so I decided to search for an online support group for parents of kids with Ewing’s sarcoma. In the process, I read one too many stories that fed all of my deepest fears.

There is a time and a place for Google, but it can also cause a lot of anxiety, so use it judiciously. If you’re tempted to do a little online research, consider sending your questions to a trusted friend who can sort through the information and pass along only the information you actually need.

Be kind to yourself

Guilt will haunt you, if you let it. I struggled with all sorts of guilt: guilt that I didn’t notice the enormous tumor in my daughter’s stomach, and guilt that I wanted to escape the hospital room and go on a run even though she was stuck there, attached to an IV pole, with a bedpan in her lap. Guilt that I wasn’t home for our other kids, and guilt that when I was home, I didn’t have the energy to interact with them the way I wanted to. I felt guilty that I literally couldn’t bring myself to vacuum a single room, that I hadn’t cooked a meal for my family in weeks, that I wrote thank you notes and never mailed them, and then I stopped writing them altogether.

Over time, however, I realized that no one is born equipped to deal with a cancer diagnosis. One day, life is normal; the next, you are fighting for your child’s life. So try to let go of any misplaced guilt and be kind to yourself. You will pour every reserve into the fight, and that’s exactly what you’re supposed to do. But, remember this: a cancer diagnosis doesn’t mean you have to stop living or smiling or laughing. Your child needs you to do those three things now more than ever.

When our daughter was diagnosed, her tumor was massive, and her future looked grim. But Aaliyah rang the bell symbolizing the end of her treatment on Sept. 9, 2017, and by the grace and power of God, and through the expertise of her care team at MD Anderson, her cancer was eradicated.

Each new morning brings new hope. Cling to that, and find another reason to smile before the day is out.

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