Connor Coen
I am sad to report that Connor Coen has lost his battle with this beast called Neuroblastoma. Our thoughts and prayers are with his entire family.
posted by Ken Lynch @ 8:02 AM
Nick LynchOn May 12th, 2006, we learned that Nick had Neuroblastoma...which is a rare and serious childhood cancer. His symptoms were a low grade fever and a tummy ache. Several doctors misdiagnosed his illness and one told Carolyn she was over-reacting when she pressed for more tests. Thankfully, she pressed on and here is a summary of what happened next. |  |
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5/12/2006 - A CT Scan revealed a mass in his abdomen. Biopsy surgery was botched and the prognosis was horrible. 5/13/2006 - An oncologist gave us hope that the situation was treatable. 5/17/2006 - Oncologists from Sacramento and later from San Francisco misdiagnosed Nick as stage 3. 5/20/2006 - MSKCC in NY is contacted. We learn that the Biopsy surgery could have been performed with a scope. 5/23/2006 - Chemo is started in Sacramento. 5/26/2006 - MSKCC advises to complete 2 cycles of chemo in Sacramento. 6/26/2006 - Nick re-diagnosed as Stage 4 by MSKCC. The bone marrow was not clean as originally thought. 6/28/2006 - New treatment plan starts in New York....More Chemo. 8/2/2006 - Tumor removed by surgery. Bone marrow is now clean. Two more chemo cycles. 9/29/2006 - NED!!!!!!!!!!!!!!!! No Evidence of Disease. 10/31/2006 - Home. Completed 5 cycles of chemo, surgery, radiation, and one cycle of 3f8 antibody. 11/11/2006 - Home for 3 weeks. Two cycles of 3f8 are complete and Accutane is started. Still NED!! 12/8/2006 - Completed 3rd cycle of antibody. 1/1/2007 - Happy Birthday Nick! In NYC for New Years, 4th Antibody & Tests. Home about 1/11. 3/9/2007 - Completed 5th cycle of 3f8 - Test Results from 1/22 - NED!!!!!!!!!!! 4/11/2007 - Heading back to NY for 3 month testing. 4/18 - NED!!!!!!!!!!!!!!!!! 4/30/2007 - Heading back for 6th 3f8 antibody treatment. All treatment complete except 3f8. 7/8/2007 - Home for two months!! Then, back to NY for 7th 3f8 antibody treatment and testing. 9/4/2007 - Back to NY for 8th 3f8 antibody treatment. Test Results from July...NED NED NED!!!! 10/25/2007 - NED!!!!!!!!!! HAMA Positive!!!!!!!!!!! OFF TREATMENT!!!!!!!!!!!!Yea Baby!!!!!! 1/25/2008 - NED 1/25/08, 4/25/08, 7/28/08, 10/24/08, 1/22/09, 4/17/09, 7/29/09, 10/30/09, 1/29/10, 4/29/10, 7/28/2010 - NED, 11/26/10, 2/9/2011, 6/18/2011, 10/15/2011, 2/21/2012 02/28/2012 - QUARTERLY TESTING NO LONGER NEEDED...Only annual checkups with Long Term Survival Team!!!! July 2012 - Meet with the Long Term Survival Team - NED July 2013 - Meet with the Long Term Survival Team - NED July 2014 - Meet with the Long Term Survival Team - NED July 2015 - Meet with the Long Term Survival Team - NED July 2016 - Meet with the Long Term Survival Team - NED July 2017 - Meet with the Long Term Survival Team - NED July 2018 - Meet with the Long Term Survival Team - NED July 2019 - Long Term Survival Team said we can skip this year. Aug 2020 - Meet with the Long Term Survival Team |
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