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

Friday, May 25, 2007

Memorial Day Weekend

I hope everyone is looking forward to a great Memorial Day Weekend!!! We certainly are.

Nick is spending his days swimming, fishing and playing with his friends. He is really having a great time and is in good spirits all the time.

Just a short update from home to let everyone know that all is well.

Saturday, May 12, 2007

It's Been a Year!

It was May 12, 2006 when we learned that Nick had Neuroblastoma.

What a year it was!! Here is a month by month recap as I remember it without the treatment details that are listed in the blog intro:

April - Nick attends "Take the field with the A's" and has a blast. That is where the main blog photo was taken.
May - Diagnosed. Chemo Started
June - Miserable hospital stays recovering from chemo...Transfer to MSKCC in New York.
July - Great 4th of July fun in upstate NY and from the "Rare View" rooftop in Manhattan. Great news that the tumor was responding to the chemo and that the bone marrow was clear.
August - Hospital all month. Successful surgery followed by miserable recovery from chemo.
September - Things really started turning around as Nick was NED.
October - Great month with Halloween at home and nothing but a positive outlook.
November - Gobble Gobble and "routine" treatments that take all day and are painful but things are going well.
December - Home most of the month. Nick is loving life like he always does.
January - Happy Birthday to Nickie New Year and a long stint in NY for treatment and testing.
February - Home all month as we are now on 8 week treatment cycles.
March - More treatment in New York
April - It was Nick's choice to take a Mediterranian Cruise for Spring Break and we all had a blast. We followed that up with Testing in NY and he is still NED
May - Completed all treatments except for on-going 3f8 Antibody.
May 12, 2007 - 8:30am - Nick is sleeping in while Carolyn, Leanna, Lawrence, & Kenny along with several friends represent "Team Nick" in a cancer awareness run in downtown Sacramento.

Looking forward --- We are "living" with cancer and hoping that the great and brilliant minds of this country and others around world will come up with a cure for this miserable disease. Great strides have been made and there is considerable promise on the horizon. For those of you interested, simply type in Neuroblastoma into Google News and you will find great stories about nano-particle research and potential use of the polio virus to kill this cancer. In addition, MSKCC is now having some success in bringing relapse patients back to NED status. This was unheard of until very recently.

Sunday, May 06, 2007

Home Again

After a little added drama created by United Air Lines cancelling our flight, we made it home safe and sound, but a few hours late.

Thanks to everyone who helps us out while we are in NY dealing with this treatment!!

Thanks also to everyone who reads my rantings here.

I will update off and on while home. Since Nick is 'off treatment' now I think he will really thrive during this two month break. We really hope that the joint pain and stiffness will go away as he is off the medicines that we think have caused it.

Saturday, May 05, 2007

Major Milestone

Nick achieved a major milestone with his completion of 3f8, cycle 6 on Friday. The day went off as expected with no unusual issues.

We now enter a period of being "off treatment" for everything except 3f8. It is a little weird because one treatment or another has been a part of our lives for the past year. We now get 2 months at home and then, assuming Nick has not developed a HAMA (resistance to 3f8) we come back in July for more 3f8 and the dreaded and nerve wracking three days of testing. I will Fed-Ex his blood to NY in 10 days to test for HAMA.

A comment about the testing process....it is very archaic. Since this disease gets little attention from anyone and zero attention from the big pharmaceuticals the testing is mostly a joke. The tests show if the cancer has returned as a tumor or in the bone marrow but they cannot detect MRD or minimal residual disease. This is why Nick's status is called NED or No Evidence of Disease and not remission. The tests just aren't good enough. Things like this drive me crazy and when I commented to the docs that I thought the testing was archaic and unacceptable, they just shook their heads as if to say it is the best we have, deal with it. There are a lot of things I want to fix regarding this disease ... stay tuned for that.

In the meantime, we are going to enjoy our two months at home with a happy and healthy little Nickie New Year!

Thursday, May 03, 2007

3f8 Thursday

Another really good day for Nick. He has tolerated the treatments much better this week than in past weeks. Only Monday was difficult. We are all excited to put this week behind us and get home on Saturday.

3f8 Wednesday

Nick is doing real well so far this week. On Wednesday we got in and out of the PDH in under 4 hours. This was a new world record. He stayed up and played card games when he got back to the hotel and was not the total zombie that he was on Monday or the last time we did 3f8. Of course today is a new day and we will see how it goes. It is amazing how each and every 3f8 week is different. Then again, it is a clinical trial and they are trying to get it figured out. What is not on trial is the fact that this stuff works!! We have talked with parent after parent of kids who still had disease after chemo, radiation, surgery and bone marrow transplants and 3f8 knocked it out!! They come from all over the world to get it.

Two more days!

Tuesday, May 01, 2007

3f8 - Tuesday

Fairly normal day....as 3f8 goes.

The real news of the day regarding Neuroblastoma was on the front page of the Wall Street Jounal. A dad that I communicated with some months ago has been battling the medical profession as well as NB. He has confronted the 'experts' and the 'system' and has fought very hard for his little girl named Penelope. I admire him and his efforts.

Here is the link to the WSJ article and their blog:

http://online.wsj.com/article/SB117798196751887629.html?mod=googlenews_wsj

The above will ask you to log-on to WSJ....however, I was able to get the entire article by searching for Penelope in Google News.

http://www.caringbridge.org/ny/penelope/

3f8 Antibody - Monday

We arrived bright and early yesterday morning in New York city. The traffic was light and it only took us an hour to get from JFK to the hotel. It can take two hours so that was nice for us. When we got there, they had an early check-in room available so we got settled and then started our walk to MSKCC.

After breakfast at the Silver Star we arrived at the PDH about 11 and got out at 7:30! It was a long day but things went about normal. Nick talked a little when he got back to the room and then slept from about 8:30pm until 9:00am this morning. He is doing his dreaded daily shot right now and then off we go for more.