Childhood Cancer Awareness

The Rhythm of Living

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I am very grateful to my college friend, Joe, who invited me to write a guest post on his site, Paugwonk. This was my first experience as a guest blogger and working with an editor. It was amazing. Joe made the editing process painless. His insightful questions and suggestions forced me to think about my piece and work to make it better. The end result is something I am very proud of. Head on over to his site and give it some love.

Adjusting to life after my son’s cancer treatment has been slower and harder than I anticipated. I should be grateful for every day, and I should quit worrying that tomorrow won’t come. And most days, I am grateful. But that gratitude carries weight. And guilt. As a direct result of all that we endured, my tolerance for bullshit is zero, while my empathy and compassion for others’ suffering—especially children—is on high alert.

My heart is like a scab that I can’t stop picking. Just as it is close to healing, I scratch it open and bleed again. I am raw and prickly. I feel as if there should be a neon sign above my head that flashes a warning to others: “Slippery road ahead! Proceed with caution!”

On paper, we are the lucky ones. Statistical outliers. Some of my friends buried their babies. The science worked for our son and he is, so far, almost unscathed from the experience. But, I know different. We are just starting to get into long-term consequences of chemotherapy, radiation, and sedation drugs.

Luke and his fellow third graders learned the recorder this year (too many Hot Cross Buns). When we went to the local music store to buy the instrument, the high-schooler behind the counter asked if I wanted to put my name in a drawing for free lessons. At Luke’s urging, I dropped my name in the clear fishbowl on the counter, paid for the recorder, and drove home.

A few weeks later, we got a phone call that our family had won two free music lessons. Luke decided he wanted to learn drums. What the heck? My husband played sax in sixth grade band and at twenty-six taught himself to play guitar. That is the extent of the musical talents in our gene pool. But drums? Aren’t those really hard? I silently cheer for Luke and his willingness to take risks while praying that his teacher is kind, patient, and doesn’t move too fast.

The music store is located on the grounds of an old farm. It is a shared space with a dance studio and a church. The barn is now a café where parents can sip on lukewarm coffee and check Facebook while their kids are in lessons. I love repurposed things. They give me hope that something useful can be born from a broken past.

The night of the first lesson, we go into a soundproof shed. It’s cold and musty and there are egg cartons stapled to the walls. Covering the egg cartons are sheets of that rubbery foam stuff I used in college to make my bed softer. In the center of the room, there are two huge drum sets facing each other. There is no way my little boy will sit behind those monstrosities and make music.

To the outside world, Luke is a bony, gangly nine year-old boy with holes in his jeans and tussled hair.

To me, he is fragile, like the eggs that were held in the cartons now lining the drum shed walls.

Luke is a cancer survivor.

At age three, he was diagnosed with stage four cancer. Our verbally advanced toddler who loved to draw and sing had a seven-centimeter tumor in his leg and metastases in both lungs. “Too many to count,” the oncologists told us.

So when the drum instructor, Ed, walks in, I hold my breath. Did he hear me suck the air from the room with staccato gulps? If Ed sees that I’m nervous then Luke will, too. I don’t want to be nervous. I want to be normal.

“Here we go. Tread carefully with us,” I think to myself.

Trauma changes how you remember things and skews time in its favor. It doesn’t matter that Luke has been a cancer survivor for six years, longer than he ever was a cancer patient. When he sits down behind those drums, I see a bald three year old boy with no eyebrows or eyelashes. I see the central line tube that hung from his chest. That tube made him vulnerable to infection, but was also a lifeline to blood transfusions, to chemotherapy, to healing.

I also see a fighter. Luke listens carefully and tries hard. He wants to please me and impress his new teacher.

Ed is smart and talented. He doesn’t coddle Luke. He moves quickly and uses terms that neither Luke nor I understand. Ed treats Luke just like his other students.

I cannot tell if Luke liked the lesson or not. His scared face is the same as his concentrating face. I do not exhale until we are in the car and Luke tells me he wants to go back. He wants to keep learning drums even after the free lessons are over.

In theory, I know more than my son. I am older and have more life experience. I am learning, however, that I am not nearly as wise as him.

At the beginning of the school year, the kids colored “all about me posters.” What is my favorite color, favorite food, what I want to be when I grow up. The question in the bottom left hand corner was “something unique about me.” Luke had written about his cancer, “When I was three I was diagnosed with cancer. It was called rhabdomyosarcoma.”  Then, he erased it and wrote over it. In his third grade penmanship, he had pressed too hard, so even though the writing was gone, you could still see the imprint of the words coming through the new identity he had chosen to share on his poster. “I am left-handed. I love to play with Legos.” Maybe on his fourth grade “all about me poster” he will add that he is a drummer.

I need to take my cues from Luke. He doesn’t want to talk about cancer. I see Luke as a CANCER survivor. Luke sees himself as a cancer SURVIVOR. Cancer is part of who he is and it shaped him, but he actively chooses not to let it define him.

Driving home from church today, I sat in the passenger seat. Luke was behind me. Luke stared out his window in just the right way, and I could see his profile in the side-view mirror. His hair is getting darker, I think. Someday a girl will fall in love with his curled eyelashes and sensitive heart.

Luke says, “Ed says that drummers have to ignore distractions. He plays one beat but I can’t pay attention to him. I have to focus on the beat I am playing.”

 Life might be unfair, but it is also achingly beautiful.

It’s the “what ifs” that get me

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For the first time ever, L pitched for 1 1/3 innings tonight. It went…not well. He was very, very nervous. He wants to please and gets nervous when people are watching. He especially wants to please people in positions of authority- parents, teachers, coaches.

There were a few tears. He lacks finesse (of course he does, he’s 9). He walked all but one batter, whom he struck out. His teammates- to their absolute credit and my pleasant surprise- were great. They have not yet learned to be mean. Instead they all cheer for each other: “You got this, Luke! You’ll get the next one, Luke!” He doesn’t. He might not ever. He likely will not ever.

Other boys do, though. There are some amazing athletes on this team. There are boys who do have finesse and control. One of the kids on this team struck out three batters in only 10 pitches. Multiple kids have grabbed would-be doubles right out the air. Other kids make the catch to get the out.

When L is up to bat (or performing at school, or playing with friends, or or or or) I am on high alert. I still see him as fragile. Bases loaded and he has the chance to get an RBI and I am praying that he makes it happen. I want him to be the hero of his own story…for something OTHER than being a cancer survivor.

What if there is some jerky parent who makes some smart ass comment about my son and his lack of athletic prowess? I am always at the ready. “Well, he stinks at baseball but he beat cancer, so take that ya blow hard!” There is never a jerky parent and I do not have to say anything. (Not yet, anyway. I fear that that day will come though.)

To the outside world, L is just too skinny and not that good at baseball. For me the experience is all about the “what ifs.” What if…

  1. He hadn’t lost 25% of his body weight (5 lbs) at age 3. Would he still be this thin? (Note. I am on the only person who worries about this. There are teams of oncology experts who are not worried. I know I need to let this one go. But there is not an ounce of fat on him. He is all bones.)
  2. He hadn’t had 15 months of intensive chemo that affected his coordination?
  3. They hadn’t radiated his thighs? Would he be a faster runner?
  4. He hadn’t spent so much time with adults at such a young age? Would he more naturally join in the chants of his fellow boys, rather than sitting on the end of the bench playing with blades of grass?

On their own, none of these things are awful or abnormal. He is average. He is nine. He is growing and making his way. But there is no “on their own” for him or for us, because there will always be this huge traumatic event in his past that may or may not have permanently altered everything about him.

It is highly likely that L would have been this average at baseball regardless of his health history. But that is something that I will never know.

Re-reading all of this now, I sound like an overbearing sports mom who thinks her kid is going to the major leagues. It’s not about that, L is good at lots of other things. He is good at things that matter more than sports. He is kind. He is a leader. He is loving. He is a creative thinker. But, when you are a young boy a lot of socialization and friendships and positive memories are forged around the baseball diamond. I just want that for him. I want his life and sense of self and memories to not be so effin layered.

I also hear a lot about me in this post. I need to get better at taking my cues from my son. It is his story, to share or not. I am working on it. Always working on it.

Choosing Faith Over Darkness

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This post originally appeared on the Jesuit Association of Student Personnel Administrators- JASPA- blog.

Growing up Catholic, my relationship with God was traditional and fear-based. God was a white-haired old man, like the movie versions of Noah and Moses, who would get angry if I did something wrong. I went to church and received the sacraments, but I cannot say that I knew God, or wanted to know God. God was just there, an ethereal being floating in the clouds. I attended Catholic grade school and high-school. So, when it came time to choose a college, most of the institutions I applied to were also Catholic.

It wasn’t until my college experience at Boston College that I really came to know and love Christ and let Christ know and love me. My years in Chestnut Hill, Massachusetts were the beginning of my faith journey. While in college, I became a student of my faith. I learned about the church as a human, flawed institution made up of sinners trying to do the right thing. Through service learning experiences, I came face-to-face with my own privilege and my own assumptions about social justice and fairness. I discovered that I wanted to be in a relationship with Christ and that I could. All I had to do was try.

I didn’t know it at the time, but I was investing in a relationship that would turn out to be the most important one of my life. I leaned into my faith and I chose to embrace the mystery of being broken by my own sins and missteps, and yet so completely loved by Christ regardless.  It was like saving for retirement. I deposited my faith in the bank.

On December 12, 2008 my three year old son, Luke Ignatius Fochtman, was diagnosed with stage four cancer. Everything that I knew about life and my role in it changed instantly and permanently. I needed the faith that I had deposited all those years before. I needed it like air.

When your child is suffering, there is nothing that you will not do to take it from them. The weight of that and the possibility that he might die were unbearable at times. It created fear beyond anything that I had ever experienced up to that point or since. The 15 months of active treatment were pure terror. There were times when I was weak and doubted my ability to be the parent that Luke needed. There were times when I wondered if he would live.

I am not hard-wired for optimism. I am more of a cautious realist. So, my relationship with hope was a tricky one. But, through prayer I was given the wisdom to let go. For the first time in my life, I put all of my fears and hopes before Christ. Choosing faith over the darkness was the ultimate act of trust. My Jesuit education gave me the courage to do it.

My experiences with my son’s illness made me a more faithful person and a better college advisor. I was not job-searching when I found my current position in the College of Nursing at Michigan State University. It happened to come open and I applied. God works like that sometimes- opening doors and letting us choose to walk through them.

Nurses were an integral part of our son’s treatment; they cared for Luke on multiple levels. Nurses taught us how to administer medicine, clean central lines, and keep Luke safe. Certified Register Nurse Anesthetists (CRNAs) put Luke to sleep over 50 times. Although the cancer was in Luke’s body, his diagnosis and treatment impacted everyone. Nurse Practitioners cared for us as Luke’s family. They asked questions about Connor, our younger son, and taught us about the cognitive, social, and emotional impact that cancer can have on a family. One of Luke’s favorite nurses, “Nurse Marshmallow,” was there at the beginning of Luke’s treatment. She runs the long-term survivor clinic that Luke will join in April. She will be with us until Luke is an adult.

When Luke was in treatment, I withdrew from my faith account daily. I prayed all the time– in the car, the shower, before falling asleep. The prayers of others helped fill my account also; I was held and comforted by others’ prayers for us. Through my current work as an advisor, I feel like I am getting the chance to make deposits again.

I am honored to be working with young women and men who will be the next generation of nurses. My students are smart, focused, and driven. They also have servants’ hearts. September is childhood cancer awareness month. For the last two years, the nursing student association has invited me to speak at their meeting. In sharing our family’s journey through the darkness, I hope my students learn that they already have within them everything they need to be a compassionate nurse. I encourage and challenge them to see themselves as the nurses who will teach a father how to give his son injections, or the nurse who holds a mother’s hand as she cries tears of joy and relief. I also hope that my students will know that they can face darkness, too. Whatever it may be.