Help Nicholas Fight Cancer
Nicholas has faught for over a year now and we thought he was cured from his Ewing's Sarcoma and then after Christmas we found out that the chemo and radiation had spawned leukemia and he now needs a bone marrow transplant. So our fight goes on. For information on how you can register to be a bone marrow donor go to https://join.bethematch.org/healingnicholas
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 is now 17 years 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.
This is something that you are never prepared for. Insurance only goes so far and my wife, who was a pre-K school teacher had to quit her job to care for our son. Because chemo lowers your immune system, she could no longer be around little kids who might pass on a cold or flu which could be devastating to our son. I am self employed and was in the middle of starting a new business when all of this happened. Since we were all healthy last year, our insurance had a high deductable which has depleted the cash reserves we had already in November and December of last year. The expenses of living in Jacksonville for two months are not covered by any insurance.
I am not used to asking anyone for money. Its just not my way. I am usually the one working at the fund raisers raising money for others. I never ever thought that one day I would be the one in need. But life has delt my family a blow and we need money to pay for expenses so that we can fight this cancer with our son. I can not express enough how much any help anyone can give would mean to us. We would be incredibly thankful and one day I can guarantee you I will pay it forward to as many people as I can.
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!
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.
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.
We still have months to go before we can say that Nicholas is out of the woods and we must be vigilant to keep him healthy till his own immune system is functioning again. That said, tests are showing that the original cancer and the chromosome cross overs that tainted his bone marrow are now gone.
Nicholas has been really brave and is following all of the doctors instructions. As a parent it pains us to see all he has to go through, but I am so proud of him.
I again want to thank everyone for all of your support. We could not have gotten this far without it. This has been devastating for us financially because insurance doesn't cover lost time earning or the many travel and living expenses associated with taking care of a sick child, especially when the treatment is in another city. As devastating as it is financially, you learn that money doesn't matter, only your families health does. When Nicholas is well again we will rebuild and I will be spending a lot of my time paying it all forward. This experience has shown me that there are a lot of kids and their families out there who need help.
What great news for the new year! I'm so happy to hear this!
Awesome. So glad we could help. It's great to hear positive news!
Awesome! Happy Holidays!
Such great news for the holidays!!
I am so glad for you guys. Have a Merry Christmas.
So ecstatically happy for you guys!!!
Such fantastic news. I wish you and your family a Blessed Christmas Season!
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.
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