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.

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