Nick Lynch

On 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.

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

Thursday, November 09, 2006

More 3f8 Today and Tomorrow

Then, we fly home Saturday. The 3f8 and morphine does not wear off until the morning or we would jump on the 8:30pm JetBlue nonstop on Friday night. Nothing interesting happened yesterday....it was routine. The next treatments for Nick go like this:

Today - 3f8 and train me on the Accutane which starts next week.
Friday - 3f8 and bone marrow aspirates (stick him with a huge needle in four places while he is asleep) to extract bone marrow and do multiple special stains to test it for disease. This will determine that Nick is still NED as we expect.
Sat 11/11 - Sat 12/2 - Home! While home, start 14 day cycle of Accutane. Do a blood test for Hama and have the Dr. back over for Insuflon insertion on Wednesday 11/29 so we can start GM-CSF shots in preparation for the next 3f8 cycle.
Sun 12/3 - Back to NY to start 3f8 again on Monday 12/4.

Bottom line, the treatments are getting easier and we get 3 weeks at home. My guess is that by Thanksgiving, Nicks hair will be back and by Christmas he will need a haircut.