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 19 - Regina Siddiqui
September 26 - Stathi Afendoulis
October 3 - Laurie Morton


 

My son Teddy died on August 16, 2010.  He had been diagnosed with an undifferentiated sarcoma in his chest on November 10, 2009, and then spent the next nine months and six days in and out of three different hospitals, enduring seven rounds of chemo, seven weeks of radiation therapy and two life-threatening operations.  But in the end, his cancer was too aggressive and too rare, and the chemo medications were too ineffective.  Teddy was beautiful, smart, brave and strong.  He went to school any day he was able, and was tutored on other days.  He missed over 100 days of 3rd grade but still was able to graduate to 4th grade.  We got his class assignment list the day before he died.  He was feeling so awful, and yet he still was happy and excited to see who his classmates were.

 

From August 16 2010 to August 16 2011, our remaining family encountered a year of “firsts”.  First Day of School without Teddy.  First Halloween without Teddy.  First Thanksgiving.  First Christmas.  First Teddy’s Birthday without Teddy.  Those days were hard, but at least we could prepare for them.  The tough ones, that hit you like a punch in the stomach, were the ones you weren’t prepared for – like running into someone who didn’t know yet, or saying “I have three children,” without even thinking, and then feeling awful afterwards.

 

Another gut-punch day was the first day of school this year.  Last year, everything was so new and raw, and everyone handled us with kid gloves.  But this year’s first day made me realize that we’re done with our “without Teddy” firsts.  Now this is our second day of the first day of school without Teddy, and next year will be the third, and so on…for as long as my other children are in school.  And it hurt.  A lot. 

 

I dropped my daughter off at school and pulled out of the parking lot, watching the families stream into the building.  Smiling, laughing, excited, nervous.  Pick up was more of the same.  No one said anything about Teddy, which was a relief in some ways, but at the same time it hurt – had people already forgotten him?  Deep down, I know they haven’t, but I felt a pain in my heart anyway.  I know that this is life going on, as it must…for me, for my husband, for our son and daughter, and for everyone else who knew Teddy.  But it doesn’t make it easier.  After spending so much of the last 22 months measuring things in small, day to day increments, the thought of having a lifetime ahead of us is sad and terrifying…but I guess it also should give us hope – hope that we will continue to live our lives remembering the past, and remembering Teddy, while moving forward as individuals and as a family.

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Although I lost my nephew, I am not the parent.  But I want to assure you - we do not forget them.  We don't always know what to say, but we never forget.  God bless you - and thank you for sharing Teddy's story. 

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