A special welcome to everyone to The Story Room......Hope and Courage. We meet Monday evenings, starting around 8:00 pm EST. A PAC2 member posts his/her story, and the rest of us can read and reply. The person "hosting" each week will stick around a bit to read and reply to your comments. The post will remain up all week for those who may not be with us on Monday evening, and comments will remain open, so feel free to leave a reply or message during the week. There are no rules in The Story Room. Please share whatever you want to share. Whether you are in the fight now, are off-treatment, have lost a child or even if the child you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time), you can come to this diary and process your story in whatever way works for you. We can't solve each other's problems, but we can be a sounding board and a place of connection. If you would like to volunteer for a specific date, please contact us at thestoryroom@peopleagainstchildhoodcancer.org - everyone is welcome. This is the schedule for the upcoming weeks, let us know if you would like to contribute.

September 5 - Monica Fochtman
September 12 - Jessica Gerber
September 19 - Regina Siddiqui
September 26 - Stathi Afendoulis


The First Day of School


As I sit here and write this post, both of my sons are upstairs sleeping. Connor, our three year old son will start pre-school next week. Our older son, Luke, is five and half years old and he will start kindergarten tomorrow, September 6th. He will wear his uniform of a white polo shirt and blue pants. He will carry a back pack with his name embroidered on the back. I will make him stand on the porch of our house so we can take 100s of pictures to send to grandparents, aunts, uncles, and friends who are far away. We will drive him to school and he will wait in line with his little friends. He already has a girlfriend- a girl who was in pre-school with him last year. They held hands at the “Kindergarten Social” two weeks ago. When the bell rings, he will walk inside and I will cry my eyes out.

 

In 2009, I did not know if my son would ever get to experience his first day of school. He could not go to pre-school because his oncologist said it was too dangerous for him to be exposed to so many other children. On December 12, 2008, Luke was diagnosed with stage four embryonal rhabdomyosarcoma (ERMS or Rhabdo, for short). Rhabdo is a cancer of muscle tissue and can present anywhere in the body. Most cases are located in the extremities or in the eye orbit. Our son’s cancer was located in his pelvis and by the time it was diagnosed, he had multiple nodules in each lung. We still do not know the exact number. Luke endured 70 weeks of treatment which included multiple rounds of chemotherapy, six weeks of daily radiation with full sedation, two central line surgeries, and multiple central line infections. On October 26, 2009 we got the news that he was cancer free. On March 15, 2010, we began our journey into “off-treatment.”

 

On the first day of school I will cry because I am grateful. My son is a cancer survivor. I know too many other families who cannot say the same because their son or daughter was stolen from them too soon. Tomorrow, I will cry because I know that Luke could have been one of those children. Tomorrow I will cry because I am a changed person. I know that not every cancer family will get this moment. But, every single one of them deserves it. To those families, I will not say that I know your pain, your agony, your rage. I do not know it. But, I can imagine it. I can see it and feel it in my heart and mind. I could have lost my son, too. The thought of losing him is an absolute terror and fear that I keep at bay every day.

 

The truth is, I do not know why my son survived and other children do not. Perhaps it was a combination of prayer, a “better” diagnosis than some, and his age, the right combination of chemo and radiation, just.plain.old.luck. All I know is that my son is still here with us. And because, he is, I am obligated to do something.

 

Tomorrow and every day, I will wear my gold ribbon and hope that someone asks me about it. I will wear my “Bald Moms Rock” awareness bracelet. On September 21, I will join the bald sisterhood of the 46 Mommas and shave my hair to raise awareness and money for the St. Baldrick’s Foundation. This is not a big thing, but it is something. Hopefully, it will raise some eyebrows and some cash for our kids. Every single one of them should be here to experience their first day of school.

 

Love and prayers from Michigan,

“Momma” Monica Fochtman

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You should be proud that you have not walked away from this issue - and thrilled your son walked through those doors on his first day.  Happiness to your family.  AJ's Aunt Pam

 

Monica, Thank you for sharing your story.

Laurie Curnan

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