Childhood Cancer Awareness

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.

Anger makes people uncomfortable

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There are five stages or parts of the grief process: Denial and isolation; anger; bargaining; depression; and acceptance. You can be in multiple “stages” at the same time and you can cycle in and out of stages. Meaning, it is possible to go through a stage and then go back to it. Over and over again.

A dear, dear friend of mine posted a graphic about the lack of funding for childhood cancer research on her facebook wall in September, which is national childhood cancer awareness month. She did this on her own. I commented and said thanks. A friend of hers (I do not know him, never met him) commented on the post as well and then compared childhood cancer funding with breast cancer funding. I wrote back and said it IS low when you consider that ALL 13 types of childhood cancers get 4% of the NCI’s total budget….blah blah. Two days later a different graphic came out. I shared it on my friend’s wall and said she should share it with her friend. Apparently, that was attacking him. I still don’t see that. But, he felt attacked and it happened on her wall so I apologized. I even wrote my version of a mea culpa post about it. You can read that here.

Since then, she and I have gone back and forth about my anger. She is a very good friend of mine and I appreciate her bringing all of this to my attention. I really had no idea how I was being perceived by others. I am doing what I do, which is try to raise awareness and advocate for children, who cannot speak for themselves.

She finally asked me what I was so angry about. Here’s my list:

  1. My three year old son almost died. (anger)
  2. He was diagnosed with stage 4 cancer in 2008. His team of oncologists told us once, “we will take him to the absolute brink and then bring him back.” They were right. The things that were done to my son’s little body are unspeakable. (anger)
  3. I wish that I had seen his tumor sooner. The cancer might have been stage 1-3, thus decreasing his treatment time and increasing his long-term survival rates. (bargaining) I am his mother. I am supposed to keep him safe.
  4. I am angry that I didn’t care about childhood cancer before my son was diagnosed. It’s the #1 disease killer of children. #1.
  5. I am mad a big pharma for putting money and profit ahead of patients’ lives.
  6. I am angry that Americans care more about boobs and penises than they do about kids.
  7. I am angry that the general public thinks childhood cancer is rare.
  8. I am angry that the general public thinks there is an 80% cure rate.
  9. The treatments that were used to save my son, could end up causing significant long-term damage (heart problems, growth problems, cognitive issues, puberty issues) and/or cause secondary cancers (skin cancer and/or leukemia).
  10. My son lived and others do not. I am angry that I have survivor guilt. I am angry that I am angry because I should be grateful and compassionate. If I keep advocating and raising money and awareness then fewer kids will get cancer and die (bargaining again).

Anger makes people uncomfortable. They equate it with violence. Which is sometimes true, but not always. The hard part about being angry with cancer is that there is nothing and no one to take it out on. Cancer is nebulous. There is no perpetrator that can be brought to trial. It is just out there. And those of us who have been forced to deal with it are left…

floating.

When I think of anger, I think of that scene in A few good men when Jack Nicholson says, “In places you don’t talk about at parties, you want me on that wall, you need me on that wall.” Of course people get angry. We all do. We are all humans. But, there are very few spaces and places where it is ok and acceptable to express your anger. It makes people uncomfortable. I get it.

I wish I weren’t angry. I wish that my son didn’t suffer the way he did. I wish. I wish. I wish. I can’t go back. I know this. And I am trying to move forward. The stages of grief are real. So is PTSD. There are triggers everywhere. Even the amazing Leah Still and her dad Devon’s heroic efforts to raise awareness and money are triggers. My son was once completely bald, too. Four years ago was both a lifetime and just yesterday.

Sometimes, the release of lashing out or posting snark is easier than the truth. But, that release is only temporary.

The truth is, I am not angry. I am scared. I am absolutely terrified that my son will die.

I have the right to be angry. And I am right to be angry. What happened to my son and our family was horrible, wrong, unfair, scary. What I am learning though is that what happened to us doesn’t give me the right to be self-righteous. I am working on that last elusive stage: acceptance.