Letter to Congressman Mike Rogers, Michigan Eighth Congressional District

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.

What you do speaks so loudly, that I cannot here what you say

This is the post that I submitted to the Women in Student Affairs (WISA) blog.

Growing up, my mother used to say this all the time. Like most children, I rolled my eyes and walked away. Now, I am the mother. I am also a wife; PhD; advocate for childhood cancer awareness, funding, and research; an academic specialist/advisor at an amazing Big Ten University; and a mid-career, higher education professional who is still trying to figure out who and what she wants to be when she grows up. In these roles that I negotiate, people are watching how I behave and paying less attention to what I say. On a cognitive level, I know this. In parenting and in student affairs, we lovingly refer to this as “the fish bowl effect.” We live in a glass bowl where our words, actions, and mistakes occur out in the open for all of the world to see and to judge.

It is one thing to know that people are watching me and it is quite another to let that knowledge influence my choices. My two young sons are watching everything I do. Every choice I make, whether intentionally or unintentionally, sends them a message about the choices and sacrifices I am willing to make for them and our family. My choices also show them how much I value myself and my own well-being.

I finished my doctoral studies in August 2010 and immediately began searching for “the next step” position. I had the credentials, the requisite years of experience, and the desire to be a mid-level, mid-career professional. I applied for many, many positions. On the recommendation of some colleagues, I applied for and was offered a Director-level position at a small, Catholic school. I bought some new professional clothes. With my degree in hand and self-righteous assuredness, off I went to my next step. I had made it!

I worked hard. I met some wonderful colleagues. I got to teach a first-year seminar course. I was a voting member of six or seven different university committees. I managed a quarter of a million dollar operating budget and I supervised five professional staff. On paper, it is the next step position.

That is what it looked like on the outside. On the inside, I was tired. All the time. I was spending three hours a day in my car. On a bad day in the snow, it was more like five hours. I was not exercising, ever. I never ate breakfast with my boys. I missed almost every event at their school. I missed my husband and my children. I had severely underestimated the physical, emotional, and financial toll that commuting would take on me and my family.

Worst of all, I wasn’t being true to myself because I wasn’t bringing everything I could to each of my roles. I was not living with integrity. I said to myself and to anyone who would listen that my family was most important. But, my life was not letting me be with them. When I walked in the door at 530pm every night, one of my sons would not speak to me because he suddenly realized that I wasn’t there before and he was mad. I am sure it felt like I was never there. It felt that way to me, too. Yet, every chance I got, I was touting myself as an example of someone who was successfully negotiating mid-career, family, and personal interests/passions. I was openly advocating for working mothers and mid-career professionals, “Look, I am doing it! So can you!”

Integrity is defined as: 1) adherence to moral and ethical principles, soundness of moral character, honesty; 2) the state of being whole, entire, or undiminished; and 3) a sound, unimpaired, perfect condition. I was not living a life of integrity. I was not being honest with myself or my employer. I was certainly not in a state of being whole, and I was not in perfect condition.

In November, I accepted a position at a university ten minutes from my house. I let go of my Director-level position. I gave up my seat at the Alice Manicur Symposium; hopefully another mid-level, mid-career professional was able to go and get from it all that she could. I no longer commute. I exercise at lunch now. The other day I helped a young woman with her resume and I introduced her to Twitter. These things do not make me a hero. But, they are little things that I am doing to re-align my words and my actions.

I eat breakfast with my boys every morning. Some days, I take my children to school. I am re-connecting with other working moms. When I get home, both of my boys greet me at the door and we go play, because I can. I have the time and mental energy to blog and tweet and volunteer with childhood cancer organizations about which I am passionate. I made choices that work for me and I am doing the best I can to actively live in to those choices. I am happier than I have been in almost two years.

Who is watching you? Your supervisees. Your supervisor. Your children. Your partner. Maybe a new professional is watching you and wondering if the student affairs “lifestyle” is really something s/he wants. Maybe it is a mid-career professional who is deciding between taking the leap to the “next position” and leaving the profession altogether. What are your choices telling others about who and what you value? Are you living with integrity?

Life is indeed a trade-off, a constant negotiation of roles, responsibilities, and choices. Turns out, my mother was right. What people do speaks volumes about who they are and who they value. I need to parent, lead, and work with integrity. There are two very important people watching me.

Bio
-Monica Marcelis Fochtman, Ph.D. is an academic specialist at Michigan State University. She is married with two young children. She also volunteers with the St. Baldrick’s Foundation, raising money and awareness for childhood cancer research.

Connect with Monica on Twitter: at @monicamfochtman or email mfochtman@hc.msu.edu

Grief changes all the rules

Thanks everyone for your words and for taking the time to read my blog and respond to my #11 and #12 things….(post from January 5)

As a person of faith, I actually believe that when people die, they do go to a better place and that their earthly suffering ends. Especially, the kid cancer warriors. They endure so much, for so long. I absolutely believe that they are in “a better place” after they die. I believe that the kiddos are finally free. Free from their suffering, free to run, and play, and jump and laugh. I believe that in Heaven, our children are beautiful and pure again. But, I would never say that to a grieving parent because that is what I believe, not necessarily what they believe or want to hear.

Some parents I know also believe as I do and it is okay to share these dreams and visions with them. I have done so with a few other Mommas and I have treasured those conversations and always will. It is important, though, to remember that others do not believe that their children are in a better place. This is their right as the grieving parent. The world of childhood cancer has taught me that comforting a friend is about them and what they need, not about what I need or believe. Being a friend is about doing and saying things to make my friend feel better. It’s not about me.

It is funny to me (not ha-ha funny, but ironic funny, I guess) that I am writing a post about believing one thing and saying another. I usually preach about “meaning what you say and saying what you mean.” This philosophy often gets me in trouble (see previous posts about my big mouth). However, I believe that grief changes everything and everyone and in those cases, the old adages about honesty no loner apply. Grief cuts away part of your soul and it never goes back completely. I know this. I must honor this in others as well.