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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I just heard from Dr. Kushner that the CT, MIBG, and MRI are all NED! As I have said before this news was expected but it still causes us a big sigh of relief as one small little spot on any of them means "relapse". Now, we must wait for the urine, blood, and bone marrow results which should come in by Friday of next week.
posted by Ken Lynch @ 9:05 AM
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