Childhood Cancer Awareness

Finding a partner you can move on “with,” not from

Posted by

1

June 12
What was the best decision you ever made?
Niki

The best decision I ever made was to have a “relationship defining talk” with a co-worker whom I thought I was starting to have feelings for.

I had no idea that when I took my first “real” student affairs job in 1999 that it would lead me to my best friend. I had never even heard of Hope College or Holland, MI. Heck, back then, I am not really sure I could have correctly placed Michigan on a map. But, I got heavily recruited at a professional conference, interviewed, got the job, etc. etc. Second year into the position, one of my co-workers and my only friend in the entire state of Michigan leaves me! Her leaving set the process in motion to hire another hall director. We interview a bunch of candidates and Sean is one of them. The only thing I remember about his interview was that he had a lot of experience and nice eyes.

We spent almost every day together the first weeks of the semester. RA training, meetings, fire drills, crappy cafeteria food (breakfast, lunch, and dinner), meetings, meetings. You really get to know someone pretty well when you are in all those meetings! Sean is also Catholic, so we went to church together and bonded over being the only Catholic people in tall, white, blonde, Reformed, Dutch, West Michigan.

One weekend I went away to see my sister play soccer. The whole drive back to Holland, I thought about how I needed and wanted to talk to Sean to tell him about it and to tell him I was back safe. Call him up. He was waiting for me to call, too. Huh. We work together. We work together all the time at a really small conservative institution. Huh.

One week later we are driving to a mall (I don’t even remember what for) and I tell him that I think we are flirting with each other. That I think I like him. That I think he likes me, too. But also that I don’t want to read into anything. He turns to me and says, “I like you. Read into that.” Best relationship defining talk ever.

10.5 years later we are still together and have faced some challenging times (see next answer below). There is no one else I want to walk with along the way.

June 10
What was your hardest parenting or partner moment?
Dana

When I first read this, I honestly thought that my answer would be our son’s cancer diagnosis. Devastating. Crushing. Life-altering. However, that has not been the hardest part. For me, the hardest part has been the “moving on” into the world of cancer survivorship and the “off-treatment” life.

Our son is a cancer survivor.

Or, our son is a CANCER survivor.

Or, our son is a cancer SURVIVOR.

The moving-on has been harder than I thought. For me, the off-treatment life has been a constant negotiation of vigilance and paranoia; and whichever one I choose depends on the day. A cough is not a cough. When my son gets a fever or a stomachache, I panic and I must choke the waves back down or I will drown. Sometimes I feel like there is too much cancer in my life. Sometimes I have bouts of “survivor guilt” because our son made it and so many others do not. Other days, I am madder than hell and I don’t feel guilty at all because every child diagnosed should have the chance to survive.

My husband is kind, patient, hard-working, funny, passionate, devoted, loyal, and an optimist. I am some of those things and a slightly pessimistic realist. His focus is truly on the moving on. He believes and acts as if you can move on without forgetting. I know he is right. I know that I can have our experience with the C word shape and mold me, but not define me. I just don’t know how or where to go. Yet.

Tarantulas, Sharks, Monkeys, and….Relapse

Posted by

1

#ReverbBroads2012 Prompt for Day 2: What gives you nightmares?

In general, I am not afraid of spiders. I don’t like them, but I am also not the type to stand on top of the toilet seat or dining room table while some man comes in to rescue me from a daddy long legs. I just wad up a bunch of TP and attack it. Then, flush it away and moving on. However, tarantulas are in an entirely different category. Just the thought of one gives me goosebumps and makes me feel nauseous (nauseated?). I lived in the desert in AZ for a year and the entire time I was there I was irrationally afraid that a tarantula would make its way into our house. I think most of this fear stems from that episode of The Brady Bunch, when they all go to Hawaii, and a tarantula ends up on Peter’s face. Anyone who grew up in the late 70s/early 80s knows exactly what I am talking about. Creepy! I think it’s the hair. On the tarantula, not Peter 😉

I grew up in NJ. Our vacation every summer was two weeks at “the shore.” (For those uninformed, this is the real Jersey Shore, not that trashy MTV show that ruined it for all of us Jerseyans and forever tainted the rest of the world.) I have also seen the movie Jaws. So, there you go. Pretty natural fear of sharks. Although I am an excellent swimmer, I never ventured too far out into the ocean. Why risk it? Interesting side note, my husband is obsessed with the Discovery Channel’s “Shark Week.” Stays up until 2 or 3am because he.cannot.turn.away. Then he has nightmares for a week and I get to hear all about them. And then I have nightmares.

I think monkeys are creepy. I love chimpanzees and find gorillas fascinating. But monkeys creep me out. I think it is the annoying oooohhhh-ahhhhhh sound they make. Ugh. Cannot stand it. You know that scene in Toy Story 3 when they tape up the monkey so they can escape from day care? Sets my teeth on edge. Blah! I have to cover my ears when we watch it.

I hesitate to write this next part. I am trying hard to have less cancer and more hope in my life. I am trying not to make every single post about our family’s journey with childhood cancer. But, me being the rule-follower that I am, I feel I must really answer the question.

What gives me nightmares?

That my son’s cancer will relapse and he will die.

Our older son is a cancer survivor. This is a miracle. He is a miracle. He is a fighter. He is a survivor. He was stage 4, with a very aggressive diagnosis (Rhabdomyosarcoma).

It is hard to release these words to the universe. As if somehow saying them out loud might make them true. Silly. Irrational. Even saying that makes me sound crazy. I know this. But once your life has been touched by cancer, everything takes on new meaning, both good and bad. And, you don’t go back to your old life or your old self, because neither of them exist. While my son is two years off treatment and has been cancer free since October 2009, the fear of relapse is an absolute terror that I keep at bay every day. It is a dark shadow that creeps into my room and my dreams at night. When I kiss him goodnight, my heart stops. I bury my face deep into his neck and I inhale. I am trying to memorize his smell. I rub my hand all over his head, which thankfully now has hair. I put my hand over his heart and try to match its rhythm to my own. I kiss his cheek, rub his back. And I thank God that I have been given another day with him.

At night, I have dreams of him running across fields of sunflowers, flying kites on the beach with his brother and grandpa, swimming in the ocean with my mom, going to college, getting married. I have nightmares that all of this will be stolen from us.

I am not sure what to say next. There is no Hollywood ending to this movie. There is no bow to wrap this package. It is my life. I choose to fully live it. Nightmares and all.

Letter to Congressman Mike Rogers, Michigan Eighth Congressional District

Posted by

0

Hon. Mike Rogers

U.S. House of Representatives

133 Cannon House Office Building

Washington, DC 20515

February 2, 2012

Dear Representative Rogers,

Please allow me to introduce myself. My name is Monica Marcelis Fochtman and I am a constituent of yours in Michigan’s Eighth Congressional District. My husband and I and our two young children live in Okemos. I am writing to you today because I want to introduce you to my son, Luke. Luke is six years old. He is thriving in kindergarten- already reading at a first grade level. He loves to draw and play with Legos. He is a kind friend and generous older brother. He knows how to love and he expresses it freely. Luke is also a miracle. Luke is a cancer survivor.

On December 12, 2008 Luke was diagnosed with Stage Four Embryonal Rhabdomyosarcoma (ERMS) at just three years old. Luke’s original tumor was 7 cm long and there were also multiple metastases in each of his lungs. The world as we knew it stopped. At the time, my husband and I did not really understand that children could even get cancer. Quickly and without warning, we were thrust into a world that no child or parent should ever experience. Luke endured 70 weeks of chemotherapy treatments, six (6) weeks of radiation treatments (each one requiring that Luke be fully sedated so that he would lay still), and multiple infections and setbacks due to his compromised immune system.

Although some great advances have been made in the area of childhood cancer research, it is not enough. In the last two decades, there have only been two new chemotherapy drugs developed for use specifically in children. The chemotherapy agents that were used to treat Luke were developed over 20 years ago and they were developed for use in adults. At one point during Luke’s treatment, his immune system was so beat-down from the cumulative effect of all the chemotherapy, that his oncologists began adjusting his doses and only gave him 75% strength. My son deserved better than 20 year old drugs. All childhood cancer warriors deserve the best medicine that this country has to offer.

I know that you are currently considering language to be included in the reauthorization of the Pediatric Research Equity Act (PREA). On behalf of my son, Luke, the thousands of other children like him, and the thousands of children who did not make it, I am writing to ask that you vote yes for the language changes suggested by Dr. Peter Adamson, Chair of the Children’s Oncology Group (COG) and by your fellow Congressman, Michael T. McCaul. For your convenience, I have attached documents from both of them which outline the suggested changes.

I had the privilege of meeting both Dr. Adamson and Congressman McCaul while my family and I were in Washington, D.C. this past September for a St. Baldrick’s Foundation head-shaving event (www.stbaldricks.org). At Union Station on September 21, 45 other cancer mothers and I (46 Mommas Shave for the Brave, http://www.46mommas.com) shaved our heads as a sign of solidarity with our children and to raise money and awareness for the kids. We also participated in visits to the Hill and the Childhood Cancer Summit, organized by COG and the Congressional Childhood Cancer Caucus.

As a result of our cancer journey, I know that Luke is one of the lucky ones. For his particular diagnosis, the five year survival rate is approximately 35%. Luke survived. Too many children diagnosed with cancer do not. Cancer is the number one disease killer of children, claiming more children than AIDS, cystic fibrosis, asthma, and genetic anomalies combined.

All children deserve a chance. The only way this chance will be given to them is if more pediatric-specific research is done. The only way that will happen is if you and other members of Congress fight for our children. I hope you will consider my request. Thank you for your time and service to our state.

Best regards,

Monica Marcelis Fochtman, Ph.D.

This picture was taken in July 2009. Luke was 3.5 years old. He was recovering from a 104.8 degree fever. Notice that the chemotherapy caused him to lose his hair, eyebrows, and eyelashes.

Our miracle. This picture was taken on Luke’s first day of pre-school at St. Thomas Aquinas in East Lansing, MI. Fall 2010.