Over the course of that first year the doctors and nurses reminded us many times that “you fight this battle one day at a time; some days you just give thanks that it was a good day.”

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Today I have to give thanks.

It’s hard to believe it’s been three years and four days since my now seventeen-year-old sister was diagnosed with synovial sarcoma—a softball sized lump underneath her kneecap. My family is a private family, and up to this point I’ve never been comfortable speaking about what happened to my family during and after her treatment. To be honest, I still prefer to not talk about it.

Maybe I’m afraid of crying. Or maybe I don’t want to go back to that place. I don’t know.

Doctors would remind us that cancer is a family disease: sometimes it’s harder on the person with cancer, and sometimes it’s harder on that person’s family. Regardless, one person battling cancer is enough. A teenager battling for her life is enough. But my sister’s diagnosis in 2011 was just the start of what would become a war.

l.gYhXjdQdCBXwPRUeThe Phone Call, February of 2011

There was snow on the ground in Virginia Beach. It was the morning of February 18th, and I was sitting in my parked car, outside my office building. I was on my cell phone, listening to my mom calmly explain the tests results. I was crying silently so she couldn’t hear. The lump in my sister’s leg—it was cancerous. And it was extremely rare.

Dr. Z, my sister’s Pediatric Oncologist, told us that this cancer occurs in only 4% of all classes of pediatric cancer. Cancer in children is rare, but this was even rarer my mom explained. Over the phone my mother was calm and focused, relaying the information like a doctor might. My father was in the background, already doing what any protective, scared dad would do: research and string pulling. He was calling family friends who were doctors, getting advice and help.

To me, the distance from Virginia to Colorado felt like the distance from the Earth to the moon. I wanted so badly to be with my family in Colorado, if nothing else but to sit in the same room and hurt together.

Taking the day off from work, I did what doctors and specialists tell you not to do: I typed the words survival rates for synovial sarcoma into Google and hit enter.

I compiled a list of the best pediatric oncologists in the country and emailed it to my dad. I sent a Facebook message to a friend who had spent time at St. Judes as a teenager. I called my sister to see how she had taken the news. I sent a text to my brother. I did everything I could to stay positive—and ignored the answer I had received from the Internet—because the long-term survival rate was too low and to be frank, it was a dark and painful thing to chew on.

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The Wedding, August of 2011

As a bridesmaid, my sister had trouble walking down the aisle at my wedding. She had to wear a wig and extra makeup. Her eyebrows had not grown back yet. She had a large, still healing, surgical scar on the back of her leg. After six grueling months of chemo and radiation, Dr. Z decided it was time to remove the softball-sized tumor. Chemo and radiation had largely failed. Surgery went well, but Dr. Z was worried that the cancer had metastasized.

The word metastasis is derived from the Greek word methistanai which simply means “to change or transform.” Dr. Z could see signs that cancer cells had broken away from the primary tumor, and were now traveling through my sister’s blood stream and lymph nodes. The tumor had “changed,” and even with the tumor gone, cancer cells were still very much present. It was a positive diagnosis for the most part, but one shrouded in uncertainty as well. It was an infinitely better outcome than my web search had initially revealed. My family was overjoyed.  We were thankful.

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The Grand Canyon, September of 2011

The sun was setting over the Grand Canyon, casting beautiful shades of red, orange, and purple. It was the night before my father, father in law, friend, and I would set off to hike rim to rim in one day. It was a 24.5-mile walk from the North rim to the South rim. We were preparing our backpacks in our little cabin-like hotel room, setting out socks, checking poles, and filling our Camelbaks with water.

I pulled a hand-made, blue and brown, paracord bracelet out of my suitcase. I was wearing one myself, but wanted to give a replica to my father. It was a son/father thing—hiking across the Grand Canyon with matching, manly, paracord bracelets.

We didn’t know it then, but those bracelets would become a bit of a symbol.

The night after the hike my father was concerned about a lump in his neck. His knees had done great, but the lump was worrying him. He showed my brother and I. My sister’s battle with cancer was still fresh on our minds—my father knew better than to ignore the lump. He went to an oncologist when he got home.

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My Brother’s Wedding, January of 2012

It was my brother’s turn to get married. I was his best man. My dad was one of the groomsmen.  Underneath our suits we each wore a blue and brown, paracord bracelet. My father could barely stand still at the front of the church, looking like he might topple over at any second. The other groomsmen were prepared to catch my father if he got dizzy and fell. He didn’t. We were thankful he had enough strength to stand with my brother during the ceremony.

My father was diagnosed with throat cancer a few weeks after our Grand Canyon hike. What my sister had just climbed out of, my father dove into. My father kept his hair, but lost all taste in his mouth. He could barely eat or drink, and developed mouth sores from the radiation.

My dad’s already skinny frame shrunk more, and the healthy, energetic, Grand-Canyon-climbing fifty-year-old was gone. A brave, chemo-worn man stood in his place.

My sister, her own hair just starting to grow back, would help my dad eat and drink. To see them switch places within months of one another was absolutely heartbreaking. For my mother, the battle became a war as she transitioned from caring for my sister to caring for my father. No break. No catching her breath.

Community

It was hard to believe the battle had turned into a war. Extended family, friends, and neighbors stepped in to help an exhausted family. My uncles installed a flat screen TV in my parent’s bedroom so my dad could watch TV after chemotherapy. Friends brought meals. A church group left a big gift basket on the front door. Neighbors watched pets when my family had to spend nights at the hospital. Strangers donated blood. Bible studies, churches, and faith communities lifted us up in prayer. Teacher’s gave my sister extensions on classwork. Organizations donated tickets to movies and shows. One nonprofit bought guitars for both my sister and father. Make A Wish called in November of 2012 and a trip to Rome was planned for my sister and parents. Back then, and still today, we are blown away by the community that helped prop us up when we needed it most. And that community of support didn’t disappear when things got a little better. It still exists, even today.

*I put a list of all the organizations that helped my family at the bottom of the post.

My wife and I visit Grandma Johnson while she was at the hospital for treatment.
My wife and I visit Grandma Johnson while she was at the hospital for treatment.
Grandmothers, November of 2012

My dad used to love Diet Coke. We even darkly joked that Diet Coke was the cause of his throat cancer. The chemo and radiation changed his taste buds though. Foods that he used to love taste completely different now. It took months before he could taste certain types of food again. Even today his taste buds are still damaged. The tumor in my father’s neck was eventually removed—the chemo and radiation had worked well. Besides some small, ongoing mouth problems his battle with cancer was over.

I was traveling for work when my mom called again, this time with more bad news. These phone calls were getting very old, by the way. Both of my grandmothers, within months of each other, had been diagnosed with cancer.  One had a brain tumor and the other had pancreatic cancer.

The cancer war continued and my family, being experts with personal experience, stepped in to offer advice and assistance.

My mom, still recovering from my sister and father’s battle, was able to spend a lot of time with her mother before she passed from pancreatic cancer in June of 2012. Their time together was special. My father’s mother ended up fighting her brain tumor into the Spring of 2013, bravely undergoing heavy amounts of radiation. My wife and I moved back to Colorado and were able to spend time with her before she passed in April of 2013.

As a grandchild of two incredible women, I am thankful for the godly legacies they left behind.

Not So Good Scans, October of 2012

In October of 2012 my sister had a series of small, malignant tumors removed from her lungs. A scan had caught these little tumors, thankfully, and Dr. Z acted quickly to remove them. It was a scary reminder of how the war could start again. All of the scans in 2013 were clean though, so life has settled back to normal. Hair has grown out again, my sister is getting better grades than I did in high school (because she’s smarter), and my dad’s taste has mostly returned. The uncertainty is a tolerable burden on my family. The alternative is war. We are thankful for a year of clean scans, even if they come with the burden of uncertainty.

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Scans

Tomorrow my sister and mom will drive to Rocky Mountain Children’s Hospital in Denver for scans and a health checkup. These happen every three months. The night before a scan day the entire family is always filled with anxiety. We hide it well though. My sister pretends she’s invincible. We shore up emotionally, batten down the hatches, and convince ourselves that the worst is behind us.

But the truth is that tomorrow’s scans are still scary as hell. Each clear scan grows our confidence though, and the anxiety is less each time. But the cancer war still seems like last week: drug cocktails, chemo, the radiation burns, creams for the radiation burns, the masks, hand sanitizer, IV fluids, pumps, scars, exhaustion, oncology wards, broviac tubes, picc lines—smell, sound, and sight of cancer is still very much in memory, especially for my sister and father. I can’t help but feel thankful for where my family is today, even in the face of uncertainty—even after the loss of two brave grandmothers, both of who fought courageously for life.

When I look back at my family’s cancer war, I realize the doctors and nurses were right—cancer is truly fought one day at a time. And even on the hard days you find something to be thankful for. Even in the face of my sister’s scans tomorrow, and an unknown result, I’m thankful for today.

*Make A Wish, Shining Stars, Brent’s Place, There with Care, Blue Star Connection

 

5 Comments

  1. Thank you for sharing, Ryan. As always, my thoughts are with Jessica tomorrow and my fingers are crossed for another clean scan. Love you all so much!

  2. Thanks for sharing, Ryan. Your family is a model of faith and grace. Saying a prayer right now…

  3. Ryan, thanks for sharing your heart in this post. My heart grieves for your family through all of this. Sometimes, there are no words that will make things better. No Christianese phrase will take away the pain.

    It takes courage to bare your soul like this. It took me a long time to realize that I needed to get my thoughts outside of my head in those seasons of trials and pain. As you know, Karen and I have walked through the pain of health struggles and not knowing. I think the unknown is what scares us the most sometimes.

    I will be praying for you, your sister, and your family over the coming days. We should catch up soon when you have some time. God bless you my friend.

  4. OMG Ryan – when one sees the joy and passion with which you live life and interact with colleagues in the field, one would never imagine you were and are continuing to deal with this war…..I so pray that our God will get you and your family through this one day at a time – thank you for being vulnerable and sharing your story with the world. It is a story that saddens yet encourages the heart and I pray that the Lord will make this journey of pain and uncertainty worth while. God bless!

  5. Thanks for sharing with such openness and honesty. Cancer has spared all but one of my extended family so I tend to (foolishly) forget that it is a disease that affects so many other friends and families who I care about. It is my hope that you and your family will never feel alone in “the wars” when they happen. I am very honored to know you and hope to see you again someday soon!