Help Nicholas Fight Cancer

$30,270 of $100,000 goal

Raised by 367 people in 29 months

Nicholas has fought for over a three years now and is we are very hopeful he is on the road to recovery.   He will be attending Embry Riddle Aeronautical University in the fall.

My name is Andrew and we were just your average family of four. Everything was great. We have two boys who are both honors students, the oldest Andy is in college on scholarship and the youngest Nicholas is a junior in high school.  Then one day the youngest, Nicholas wakes up with a pain in his neck.  It doesn't go away and soon he starts feeling pain down his arm.  You take him to the doctor and they do an MRI.  The next day you are called in by the doctor that tells you your 16 year old son has a large tumor growing in his neck and its wrapped around the nerves going to the right side of his body.  A biopsy reveals that it is a  rare bone cancer called Ewings Sarcoma.  Smaller tumors are also found in his lungs. A families worst nightmare begins.

Nicholas was a 17 year old and a science honors student at West Boca High School. 
He is one of the kindest and most polite kids you can meet. He loves playing Nintendo and going to events like Comicon. One day he hopes to write his own games.  But for now his life is on hold since he is unable to go to school because of the intensity of the chemo therapy. 

To fight this cancer Nicholas has gone through 12 months of intense chemotherapy (13 sessions) to attack the cancer which has spread in his body.  The tumor was inoperable since it is wrapped around the nerves to his arm and chest.  The only option was radiation, but standard x-ray radiation is very risky because of the location of the tumor in proximity to the spine.  The best option was proton radiation, which is highly focuses and allows higher doses to be delivered to the tumor without radiating surrounding tissue.  There are only a few facilities in the nation that are equiped for this kind of treatment.  The closest one to us was in Jacksonville, Florida.  We had to travel to Jacksonville and rent an apartment there for 3 months while he was being treated.  During this time his throat completely closed off and he had to be fed via an IV for four months till his throat healed.

We thought that we had the greatest Christmas present in the world December 2016 when he had finished his entire cancer protocal and the PET scans came back that he was clean of the Ewings cancer.  But the joy we felt was short lived.  The Tuesday after Christmas we went in for a routine blood check and found that they had received the results back from a bone marrow biopsy they had done 3 weeks earlier.  We had gotten the results for the testing for Ewings already, but the doctor had them test for any other cancers.  We were then informed that the markers for luekemia were found and that if he did not have a bone marrow transplant soon it would develope into full blown luekemia.  So at the moment when we were just about to put all of our lives back together we were informed that our fight is not over and that our son is in for another 6 month battle before this war is won.  

After receiving a bone marrow transplant and spending 3 months in seclusion in the hospital, Nicholas began recovering well.  But the fight had left him very thin and weak.  His throat also had a narrowing which was caused by the scaring from both the radiation.   This made it very hard for him to eat. 

As the summer came on he developed a very bad cough and then experienced a number of pneumothoraxes, or air leaks in his lungs.  This eventually lead to a lung collapsing and emergency surgery to repair the leak.  As horrible as this sounds, this saved his life because while doing the lung surgery they discovered that the cough and lung troubles were being caused by GVHD (graph vs host disease) or his new blood seeing his lungs as a foreign body and attacking them.  After more days in and out of the hospital the doctors eventually were able to get a handle on this new issue with numerous medications. 

Nicholas is now slowly recovering and gaining back his weight and has been given the green light by the doctors to attend college this fall.   I am hoping that this is the end of this chapter of my sons story and that they chapter to come are bright.

 

Thank you to all that donated.  Without you my family could not have gotten through this.  Nicholas is only here today because of all of the support everyone has given him.  Thank  you from the bottom of my heart.




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I was asked today about this page and how Nicholas was doing so I felt it deserved an update. I am doing so not to ask for any more money, but to thank those who have donated and let you know how Nicholas is doing.

After the bone marrow transplant Nicholas was doing quite well until a few months ago when he began having lung and throat issues that crescendo-ed when one of his lungs collapsed because of a pneumothorax, or air leak and he had to have emergency surgery. Upon surgery to repair this leak, it was found that he had developed what is called graph vs host disease which is essentially his new blood from his new bone marrow seeing his lungs as a threat. After many days in and out of hospital to get everything under control he was put on medication to control the GVHD. He is now doing well and gaining back his weight and has been given the green light by doctors to attend college this fall. He will be highly monitored by the doctors and have to be very careful with his health for quite some time, but he is looking forward to getting on with his life.

Despite having not attended normal classes in school for over two years, he took his ACTs in the Spring and scored 100% on both math and science. This earned him a full ride scholarship to Embry Riddle Aeronautical University where he will begin studying engineering.

I hope that this will be my last update until I can announce that he is graduating from college.
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It’s the start of a new year so I thought I should give an update and even more a huge thanks to everyone who helped us get through 2017 (and 2016 before that). I really can’t express enough gratitude to those people who helped my family get through this.

Nicholas has been doing wonderful and all of his blood count numbers are just about normal. The last scans showed no signs of cancer! We still need to take him into the hospital every few weeks for follow up checkups but those are getting very routine. The bone marrow transplant wiped out all those vaccines you get as a kid, so he has to wait till March to get them again. So in the meantime he has to still be careful of crowds but other than that his immune system is working well.

As a family we are trying to get back to normal again. We had a great Christmas here at home with lots of laughter and a lot to be thankful for. I have continued my charity work with the 501st Legion, volunteering to help at local hospitals and children’s charities. I hope it’s our time to help others. We look forward to a great 2018!
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Its been a while since my last update so I thought I should share how Nicholas is doing. He is doing really well. His blood counts this morning were all normal with the highest platelet and white blood count he has had since this all started almost 2 years ago. Last week the doctors even let him go out with his friends which is something he hasn't done in almost a year. The week before he had his port removed and the scare is almost completely healed. He still needs to gain weight but we are feeding him lots of ice cream and milk shakes along with his normal meals so we hope to have him plumped back up to normal soon.

As a family we are all starting to climb out of the trenches and look toward the future again. It has been a very hard road and for the last two years our entire focus has been on saving the boy. My wife and I are both suffering from what the doctors have called post traumatic stress disorder similar to what a soldier returning from battle may have. Every day that goes by and the boy is getting healthier, we too get better. I am again working full time to get my businesses back up and running. I have two new inventions which I just applied for patents on and the prop making business which I started when Nicholas was in the hospital is growing. (theplasticarmsdealer.etsy.com) Once we get the cash flow moving again I hope to turn my efforts back to CarShowTV. A new website is already in the works and I am looking for sponsors to shoot new episodes.

My work with the 501st Legion both in hospitals and with various children's charities continues to grow and is my way of paying ahead all the kindness people have shown my family. In time I hope to be able to start my own charity helping teenager who are fighting cancer.

We are still struggling financially and I expect we will be for a while, but what I value most, my families health, and that is looking better every day. For that I can't be thankful enough.

I want to truly thank every single person who donated, brought us food, watched our house, threw a car show, or just kept us in their thoughts. I can honestly tell you that we would not have been able to get Nicholas through this to this point without everyones help. I am truly humbled by so many good people out there.
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It has been a while since I posted an update. A bone marrow transplant is a very long process and much of it is spent in isolation because of the loss of the immune system. Nicholas has been home now and we only have to visit the doctors in Miami once a week. Though he is home he still has a weak immune system so he isn't allowed visitors. This has also meant that my wife and I have had to likewise keep a low profile in public because we can't bring any infections into our house.

Nicholas is doing really well though. The doctors have been reducing his medication and this morning they decided to completely take him off one of the most important medications which reduces his new immune system. This was a pretty big deal because they now feel his body is ready for his immune system to come back. It has also meant that a number of other medications could also be removed. He is also been allowed to go for walks outside.

Every day I can see him getting stronger and I am so thankful to all the doctors and nurses and researchers who have been a part of our lives the last year and a half. We have met and been helped by some amazing people.

I also want to thank all of you who have helped our family. I know for a fact my son would not have come this far without my wife and I there for him. It was only because of you that we were able to be there with him. Financially my family is devastated but the true value of the family is that we are all together alive. What ever else was lost can be rebuilt if we are together.

Our fight is not over and we could use your help. Nicholas still has a few more months before his immune system will be strong enough for going out in public and likewise my wife and I still need to keep a low profile. But we can see a light at the end of this tunnel.
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Read a Previous Update
Ann Marie Butler
7 months ago

What great news for the new year! I'm so happy to hear this!

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Matt Dragovits
10 months ago

Awesome. So glad we could help. It's great to hear positive news!

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Tina Dale
20 months ago

Awesome! Happy Holidays!

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Daniel Blanco
20 months ago

Such great news for the holidays!!

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Morty Mozzar
20 months ago

I am so glad for you guys. Have a Merry Christmas.

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Anne Currie
20 months ago

So ecstatically happy for you guys!!!

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Matt Dragovits
20 months ago

Such fantastic news. I wish you and your family a Blessed Christmas Season!

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Pattye Maier McClary
27 months ago

Thank you to all that have helped Nicholas and Andrew's family. It means so much to them and me that so many people are kind and giving.

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Patti Roldan Baris
29 months ago

Visit with Dr. John Nouten in Boca Raton. He just performed surgery in my mom who had a tumor T1 crushing her nerve as well. We were first told it couldn't be done by other Drs. He is an amazing Dr and she is doing great! 561-955-4600

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$30,270 of $100,000 goal

Raised by 367 people in 29 months
Created March 16, 2016
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$10
Anonymous
6 months ago
JV
$50
Jeff Vincent
9 months ago

501st DT love!!!

DT
$50
Derek Thompson
10 months ago

I saw your dads designs on Thingiverse and your story moved me. Be well and happy.

AN
$50
An Nguyen
16 months ago

Good luck Nick. Your dad's designs led me here.

$150
Ann Marie Butler
17 months ago

My commission from the February Stella & Dot Style Session!

$100
Robert Cowan
18 months ago

A very deserving young man and I am hopeful more of you will get involved and assist monetarily.

Ann Marie Butler
7 months ago

What great news for the new year! I'm so happy to hear this!

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Matt Dragovits
10 months ago

Awesome. So glad we could help. It's great to hear positive news!

+ Read More
Tina Dale
20 months ago

Awesome! Happy Holidays!

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Daniel Blanco
20 months ago

Such great news for the holidays!!

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Morty Mozzar
20 months ago

I am so glad for you guys. Have a Merry Christmas.

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Anne Currie
20 months ago

So ecstatically happy for you guys!!!

+ Read More
Matt Dragovits
20 months ago

Such fantastic news. I wish you and your family a Blessed Christmas Season!

+ Read More
Pattye Maier McClary
27 months ago

Thank you to all that have helped Nicholas and Andrew's family. It means so much to them and me that so many people are kind and giving.

+ Read More
Patti Roldan Baris
29 months ago

Visit with Dr. John Nouten in Boca Raton. He just performed surgery in my mom who had a tumor T1 crushing her nerve as well. We were first told it couldn't be done by other Drs. He is an amazing Dr and she is doing great! 561-955-4600

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