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Jacob’s Story

Jacob was born on May 21, 1998.  On February 26, 2007, he was diagnosed with medulloblastoma, a pediatric brain cancer.  Jacob lived a full and joyful life until January 16, 2009.  He was a light to us all.  We love him and we miss him.

Please visit: www.kidsvcancer.org

 Ben on R:  http://www.youtube.com/watch?v=jF1Bnf3HsQU


 



Our new slideshows of Jacob and Ben: http://www.vimeo.com/12067965



Other slideshows of Jacob (and Ben): www.vimeo.com/6829867 and   www.vimeo.com/3139374.



Please join us on facebook at:
www.facebook.com/kidsvcancer and
www.causes.com/kidsvcancer

Recent press: http://www.fiveborosports.com/ssp/news?news_id=1518

Latest Journal Update

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Dear friends and family,
 
Thank you for checking up on us again this year.
 
Since we last wrote, Ben finished his first year at Sidwell and is now well on his way through the fourth grade. In between, he enjoyed a summer of sleepaway camp, theater camp, visits to grandparents and a family trip to Paris and Barcelona. Ben's favorite sight was the Sagrida de Familia. Sarah loved the nightlife and refused to sleep until she was strolled down the boulevards until 2:00 in the morning. 

Ben has become such a loving, mature, funny young man. We're so proud of him. We're grateful for Sidwell's excellent teachers, warm parents and terrific kids. Ben's new academic passion is Chinese; he regales us with hand movements to mark different tones. In addition, he seems particularly interested in science and social studies and continues to amaze us with his perceptive questions and insightful observations about world events, including about the European financial crisis and the Middle East uprising. (Wonder where he gets this from.) After being somewhat remiss in providing Ben with any religious education, this year Ben started Sunday school and -- somewhat to our surprise -- loves it. He seems to really enjoy learning the history, traditions and rituals. 

Ben has pursued many of the same passions Jacob explored. With four of his 4th grade friends, he formed a rock band called Twenty20 (the year they graduate from high school) and have been playing gigs at local bars. (If you're up for it, you can find their some of their clips at http://www.youtube.com/watch?v=YI4QZAdiPJ8). Ben has also been honing his skills at soccer and lacrosse this year, learning the fine art of mowing over the opposing team's players. For Hannukah, he asked for hockey skates and has taken to the ice every chance he gets. (For both Jacob and Ben, passion for sports somewhat exceeds ability.) 

Mourning Jacob is tougher for Ben than for the two of us. His memories are fuzzier. He doesn't have friends in Washington who knew Jacob. The school day doesn't stop when he needs a breather. He doesn't have a specific activity through which to channel his feelings. And at every developmental stage, Ben must mourn all over again as he understands death in a new way. This past week, we visited NYU Hospital's Hassenfeld clinic, where Jacob was treated. Ben put together an art project for the kids and just hung out with some of the patients. He did such a wonderful job and was so grateful for the opportunity to reconnect in this way. Hassenfeld is a place of love and hope and joy . . . against a backdrop of understandable anxiety. Miracles occur every day as kids wrest joy out of just being alive. We're thankful Jacob was treated there. 

At 14 months, Sarah is a great source of joy to us all She is now walking (or rather waddling) and has added a few words to her communicative gestures. She's got  big personality -- and isn't afraid to use it at all times of day and night.  She loves to race into Ben's room in the morning and climb onto his head as he sleeps. Ben. And Ben is thrilled with Sarah. He loves to hold her and take care of her, which we did not fully expect. He's taken on the role of her teacher and protector, and she in turn worships Ben. She just loves everything about Ben. 

Nancy continues to build Kids v Cancer. This year, she saw the introduction into Congress of the Creating Hope Act, a bill she drafted to spur on the development of life-saving drugs for pediatric rare diseases, including cancer. The Creating Hope Act now has 104 Republican and Democratic co-sponsors and has a decent chance of passage this year. (Please take 2 minutes to write your Representative to voice your support by clicking www.facebook.com/kidsvcancer.). Some of our friends who visited Washington went up to Capitol Hill with their kids to lobby for the Creating Hope Act. It was great fun for all and, frankly, there is no more effective advocate than an articulate child. If you find yourself coming to Washington and are interested, please let us know so that Nancy can set up appointments for your kids. 

Kids v Cancer also launched a tissue bank for pediatric autopsy brain tumor tissue. (We donated some of Jacob's tissue, which allowed researchers to make some groundbreaking discoveries.) In addition, Kids v Cancer is working with the FDA to promote pediatric cancer drug development. With a staff of four, Nancy views Kids v Cancer as a way to continue to fight for children like Jacob. For the whole story, see www.kidsvcancer.org or www.facebook.com/kidsvcancer. 
 
Michael continues to be immersed and happy with his work at the White House. It's been a rather busy year and he is thoroughly enjoying the opportunity to serve. 

To have children is to always be looking to the future, but for Jacob, we measure our time backwards since January 16, 2009. (If you're in NYC on Martin Luther King day, January 16, feel free to join us at the JCC of Manhattan's service day for a Kids V Cancer bake sale in Jacob's memory.) It's been almost three years since Jacob died, and we continue to talk about him daily and keep his memory alive, reminiscing about his favorite sports and music and how he used to get into trouble for whacking Ben when Ben was irritating him. A favorite activity is for all of us to pile onto the end of the couch where Jacob spent so much time and watch old family video clips. This year, we've had the opportunity to attend the bar or bat mitzvahs of Jacob's cousin and friends and imagined what Jacob would have been like at this age, how he would have looked and carried himself. We have been touched by how many of his friends talked about Jacob as part of their speech or did community service projects in his honor. Thank you. 

As we're learning, the loss of a child is not something one simply "gets over," but with each passing month, our hearts continue to repair and we explore new opportunities for renewal.  Sitting around the kitchen table Saturday mornings with Ben and Sarah eating waffles and laughing, life is almost perfect. 


Best wishes for a year of health and happiness.



Nancy Goodman (nancygoodman@kidsvcancer.org)






Mike Froman (mfroman@hotmail.com)