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Nicholas’s Story

Hi there!  This site was started in August 2011 when Nic was first diagnosed with Brain Cancer. It is used to inform and update those who want to know more on Nicholas's condition and the life changing experiences that surround his illness. **Nic passed away 8/4/12**

 

   Nic has been diagnosed with brain Cancer.  He had an MRI that showed a tumor inside the Pons within the brain stem.  He will be doing Radiation treatment for 6 weeks beginning Monday. (last zap was on 10/4/2011) He is a strong and stubborn little guy.  At this point he has difficult time walking and is a little more tired than usual. He has some left sided motor function loss that we hope he regains with the treatments.(5/13.2012...Nic is unable to walk and uses a wheelchair outside of the house.  His left side has minimal functioning.  At this time ALL treatments have been stopped per Nic's request.  We are unsure of the amount of time we have left.) Doctors have informed us that this type of tumor is "bad" and most likely aggressive. ( In January 2012 a biopsy was done and pathology reports low grade glioma...problem is that it is not behaving the way they would expect a low grade tumor to behave) We have decided to take one day at a time and enjoy every moment we can. We know that radiation will only help for so long and that when it stops helping it is going to be rough. Nic began chemo in March after having a debulking operation in January that only helped for a short time before the tumor began to grow again at a more rapid pace.  Past cases similar to his have varied life expectancy lengths from a few weeks up to 9 months. It is now April which takes us to the 8th month.  Nic is somewhat stable at this point.  He is unable to walk without a great deal of assistance so we use a wheelchair outside of the house.  He attends regular 1st grade most days even if it is just for a part of the day.  His school is awesome in being flexible to whatever Nic needs and have hired on a Para to be with him while he is in school. Many changes have occurred over the past 8 months when this all began.  All we want to think about is the here and now of today.   Thanks to all Family and Friends for your support!

I am no longer going to try to update this background story because I think it may get too confusing for some.  This started in August of 2011 and many many different things have taken place since.  We have gone from hearing there was nothing that could be done and that Nic would only live a few months and watching him lose much of his motor functions to having surgery watching him walk run and jump again being told that he would possibly live to see graduation back down to having chemo after a short (6 weeks) miracle that now chemo is not working and we are back on a road to the end of his time here with us.  Brain Cancer such as Nic's is difficult to predict what will happen when and what all can be done.  Just because today we are doing no treatments does not mean we are not still searching for something to help him.  My hope is that somebody somewhere comes up with a treatment that will give me my Nic back.  My fear is that this treatment will be discovered the day after my Nic dies.  With that being said I will continue to pray and take this one day at a time.

Latest Journal Update

Two Years Ago Today........

It has been two years since my sweet Nic took his last breath.  My heart still aches.  Some days more than than others...today being one of the most difficult.  It has only been two years but for some reason it feels like it has been 10 years since he died.  The ache is still very fresh though, for me anyway.    Just about EVERYTHING in my life has changed since he died.  Most of the people I see and talk to on a daily basis have never even met my Nic.  It gets kind of awkward when I start to talk about him to those who are new in my life.  Most times I think it is because they never seem to know what to say. I think it makes them feel uncomfortable..then of course i start to feel uncomfortable and try to change the subject quick.  I want to talk about him though.  I need to talk about him.  Some might think that I bring him up too much and that maybe I have not dealt with him being gone yet.  That is not the case at all.  I know my son is dead.  I knew from when he was first diagnosed that he was going to die.  I accepted it and went on with life the best way I could doing anything and everything I possibly could to see to it that my Nic got the most out of the time he had left.  It might sound awful but honestly that year was the best year of my life.  Maybe using the word "best" is not quite right. So maybe the most significant or the most meaningful year of my life suits it better.  In any case, I have dealt with it and I do not dwell on it but the fact remains He was/is my son and he was alive and we had an amazing journey that I want to share with the world.  Although it may be heart breaking and sad at times it was still absolutely amazing.  I am still in awe of how many people followed along and offered words of comfort and support to someone many of them never even met.  I would receive messages and emails telling me how Nic's story had changed their life or brought them closer to God or that they were touched by his story.  I cannot be for certain if  those same people still feel the same way but just knowing that at that particular time they felt compelled to share it with me, makes me feel good and makes me feel like Nic had a real purpose and his death was more meaningful and easier to accept.  I want to continue to share my Nic with others, especially those who never got the chance to meet him in hopes that maybe they too will be touched by him somehow.  It makes the pain of losing him easier to deal with.  Bittersweet I guess you could say.  

For a few months after My Nic died I questioned myself as to whether or not I did right by him.  Did I do enough?  Why did I not beg God to save him like I begged him to allow him to walk and run again?  What kind of mom does not beg for her child's life to be saved?  The only answers I could come up with were that I just "knew" and if I did not accept what was going to happen it would make things so much worse. I did not want my Nic to die.  I did not want to lose him forever.  I was not given options.  The only option I saw was "Acceptance".  We went along with the doctors plans and did what we could to adjust to things as they came up but more so because doing nothing at all felt wrong.   Just recently I started to think about how Nic really handled things throughout his journey.  Ya know he never begged to be saved or begged to live either? Why?  He was seven years old.  You would think that at that age a child would be scared senseless that they were going to die and that they would be crying and begging to be "healed" or to live.  Not my Nic..not at all.  He never asked me to make it go away like he did when he fell down and got hurt or something and I would kiss it or put a band-aid on it and "poof" it was all better.  Did he know that mommy could not fix this one?  How could he know that?  Why didn't he freak out?  He knew what "dead" meant.  Or at least that dead to him meant gone away forever not to be seen again.  Him asking me what Cancer was just days before he was diagnosed??? All the "coincidental" things that happened that maybe are not so coincidental after all?? All of it continues to make me think that my Nic was being comforted in a way that is difficult to grasp. Especially by someone like me.   Spiritual guide?? Guardian Angel??  Is it really possible?  There are no other alternatives.  No other possible explanations....there is no other way.   I was there..things happened that you cannot explain..things that you cannot just talk about either without others looking at you like you are crazy.  I have shared some of those things and maybe someday I will share more but for now I will continue to replay the journey in my own mind and write when I need to.
Dylan, Jacob and I all had dinner together tonight and then went to Nic's resting place.  We released balloons and talked a little.  A few months ago I saw that there was a new "Pigeon" book published and released.  I bought it and tonight read it for the first time with the boys at the cemetery. It is called "The Pigeon Needs A Bath".  Nic would have loved it.  I could almost hear him reading it aloud with me and laughing just like he used to do.  
Not a day goes by that I do not think of my sweet Nic or that I do not ache inside from missing him.  I am a survivor though and I will continue to survive until God decides otherwise.    
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Comments

8 Comments

Debra Knowles
By Deb Knowles
Can't forget Nic! He went to Heaven on my birthday. You're often in my thoughts and prayers. My wish for you is that you continue to live while you're still living. My constant comfort in life is God's promise to never leave or forsake His own. Jesus be with you always!
Michelle Deehan
By Michelle Deehan
Great to hear how you've been doing Amy. I always enjoy reading your posts. Your Nic will never be forgotten, hearing your story made a profound change in me, one of life's stories that I shall always remember. I don't know you at all, but from reading your posts over the past few years, I've no doubt you are a super Mom and the best that little Nic could have ever had. Don't ever doubt yourself, you are amazing!
Bobbie Bockovich
By
Dear, Dear Amy,
It's so good to hear from you and to hear that you're getting on with your life. We were thinking of Nic the other day too. He was a "special Kid" as we all know. He did seems to have a sense of God's plan before anyone else, and, he was willing to go along, with a few regrets about leaving you, but, we think he had the feeling that God would be there for you too. We believe things usually work out for us with love & prayers.

Don't ever let yourself doubt that you were a good Mom to Nic.. We think you were chosen for him. And, don't ever let yourself think you didn't pray enough for his recovery. Nic knew how things would go, maybe thru Angels, dreams from God, or however. We chose to believe that such things do happen, and, that people are put into spots where they can help as much as possible.

We've been happy to communicate with you thru Nic's and your "journey". It does reinforce our feelings about life & death. There is a Heaven!! Can picture Nic enjoying his health & making friends with everyone. If you get a chance, see the movie, "God Is NOT Dead". We saw "Heaven Is For Real" too. Wonderful stories! So many folks come out of colleges, etc. now, being agnostics or atheists. It is so sad to see & hear about that...We're sorry that they will miss out on all the best life has to offer, even though God doesn't promise us there won't be sorrows at times.

Have you thot any more about "Nic & Amy's Journey" book? Your last thoughts would make a good beginning...We do think it would be of help to others going thru what you & Nic did. So happy too that you & the boys were able to share some time together. Please take care of yourself now, live your life to the fullest & rejoice that you're doing as Nic wanted you to do. And, please stay in touch.

With All Our Love & Prayers.
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Dawn Belair
By Dawn Belair
Amy, thank you for sharing how you are doing. I have thought of you and Nic a lot lately, hoping you are doing good and knowing he is in s good place.
Danetta Einberger
By Danetta Einberger
Danetta Einberger
By Danetta Einberger
Thank you for sharing this Cuz.We were thinking about all of you yesterday.Glad you were togethter with your boys yesterday. Gabbie asked me the other day ,out of the blue "Mom how old is Nic now?" So she Also still think about him. We Love you .(((HUGS))))) Now I have a Frog in my house that Gabbie caught and just had to keep. I just think to myself hmmmmm sometimes.
Jennifer Brosdahl
By
Hey Aim ~ thank you for writing what you wrote...I too really appreciated that you shared that year with us. It was an awesome & intimate thing to be a part of. Sooo glad to hear the 3 of you got together last night -- what a cool tribute to Nic :) For me & hopefully for you, there's only one word that answers all of your questions about that year & it's amazing coincidences and happenings: God. Period.
Love you.
Barb W.
By Barb W.
Those of us that were significantly changed by Nic AND you are still changed today and always will be. My son, Ethan, was talking about God and death and life after death...guess who he brought up?? Of course Nic! It warms my heart when Ethan mentions Nic. You and your beautiful Nic will always be with us. We will always remember...never ever will forget...Nic. How can we? You two changed not only me but my son! Big hugs to you, Amy, and thank you for opening yourself and Nic to all of us:)🎈🎈🎈🎈🎈🎈🎈