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In Honor of Nicholas

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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

Time.....

Time keeps passing...in slow motion.  I keep waiting for it to get easier..it doesn't.  At this point I am not certain it ever will.  Life has changed so much since Nic has been gone.  I wish I could say that there has been a lot of good changes but really they are minimal.  When I think back to when I told Nic I would be ok and that I will get through it all I had no real idea of exactly how difficult that would be.  I miss him.  I miss him more and more every day.  There is an emptiness inside of me that nothing can fill.  I try to keep busy and fill my time with anything and everything so as not to dwell too much on him not being here anymore but I cannot fill every minute of every day,,,much like now as I sit here and just think.  It has been so long since I have posted an entry and I thought that maybe by doing so now, it might help the way it used to.  I used to feel comfort in writing.  A release so to speak.  For the last several days I have seen dragon flies, frogs and dimes like crazy.  Every where.  Maybe he knows I am sad.  I hate that.  I hate that I cannot help it.  I hate that it hurts.  I hate that nothing I do or say makes it any easier.  There are times when I feel like I am a fake.  I walk around pretending that life is just fine when really I am doing all I can to not completely lose it.  
I took a break from writing for a few minutes to grab a cup of coffee and regroup..lol  It gave me a chance to cry for a minute and then ask myself why I am really choosing to write today.  Why?  Many have said over the course of Nic dying that I was always blunt and honest...I still am and this is the reality of it.  It will be 3 years in August and my heart is still as heavy now as it was when he died.  I am surviving just as I promised Nic but it is not always easy.  Not a day goes by that I do not think of my sweet Nic but most days I do so and smile...today was one of those difficult days for some reason.  I kind of have to chuckle here because it is only 830 in the morning and the likelihood of me remaining in an off mood all day is null.  So lets just say it was an off morning :)
I feel better already. I may chicken out and not even post this (like I have the last several times I have written)The entries are saved as drafts if I choose not to post so that I can read them myself and reflect back.  I don't want people feeling sorry for me or feeling bad because I feel sad.  There isn't anything that anyone can do to change how I feel deep inside...that's reality.  It's alright.  I will manage...I always do...some days are just a bit tougher than others.  God has a plan and although my patience is wearing thin, he knows what is to come...I need to remember to trust that...Nic did :)
Side note here that I thought was kinda funny....as I was just writing that last paragraph I could here something making noise and it was freaking me out a bit so I got up to see what it was...it was a frog!  WTH???  Not sure how it got in here but I caught it and brought it outside.  A frog?  Wow...made me smile...you never know now do you :)


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Comments

9 Comments

Julie Allen
By
I hope that you can find comfort in the signs......there are so many....I am thanking Nic for sending them to you....its not the easiest thing to pull off from the other side!! :)
Bobbie Bockovich
By Bobbie Bockovich
Dear, Dear Amy, Glad you posted. Have been wondering how you've doing...sorry to hear that some days are still really, really tough! Know that you're expressing feelings is fine with whoever still keeps CB on our contact list. We want you to know we still say prayers for you and want you to be well & as happy as possible. Sure glad the frog made you smile and maybe made the day easier for you. We think Nic wants that too, with all the little reminders showing up. Really think he has a hand in the signs, so glad they're there for you & that you feel & see them, even tho it may sound strange to some folks, we really believe in them. And, you have the right to grieve, there is no time limit, and we're here to try to help you feel better if possible. We haven't forgotten you or the "special Nic" we came to know & love. Sure hope posting does ease some of the pain, if so, keep it up, especially if it helps. Any more thoughts about doing a children's book about your brave little Nic? Don't ever think we've forgotten you two! Will keep prayers coming your way as long as you'd like. God Bless. Love & Hugs, Bobbie & Dick
Rosemary K.
By Rosemary K.
Hi, I am glad you wrote in today. I was thinking about Nic last night - and dimes and candy from a Mexican piñata - and his concern for you when he would be gone. Your stories about you and Nic were so real that it seemed like I knew him. Good work! You should investigate writing a blog so we could continue to enjoy your view of life.
God Bless you.
Elaine Trejo
By Elaine Trejo
I too thought of you this am and wondered how you are doing. The signs are real - most people don't look or see them though. I'm glad you can. Take care and know that this is a process - and that you never get over it, you just adjust - in time. And take your time. No one can decide for you what that is. Take care.....
Sharon Berndt
By Sharon Berndt
Amy, thought of you this morning as I drove in to work and now look....you post an entry! I hope that you find some peace and comfort today. Please take care of yourself. Sending hugs your way.
Kate Greenberg
By Kate Greenberg
Just like Nic to send that frog. Can hear his giggle now and see him so vividly giving you that one last hug and kiss before you left him off at school. Someday you will be together again and until then enjoy your life for Nic. I think of him so often. His determination and faith were such an inspiration. I will never forget it. It took me about 1 second after meeting him to love that boy. A few weeks ago we had a frog in the office where I work. Yep, Nic found me in Lincoln, NE. Amy, I still think you should write a book. Hugs sent your way. Take care!
Julie Hofer
By
I love that you see signs!!!! Although my girls never met Nic....they still remember sending balloons up to NIc. I think we should do that again soon :) Thank you for being real. I cannot imagine the pain and hole in your heart and soul.
Dawn Belair
By Dawn Belair — last edited
Amy, you are doing just fine. I couldn't imagine lossing a child. You have and you are an inspiration to all of us. Please keep up with your posts.
May you find someone to share your life with that would help you through the difficult times you have.
I think the frog was Nic sneaking in to say, to say, good morning mom and it is okay.
Need to add a huge hug for hug.
Tara Owen
By Tara Owen
((((HUGS)))) to you. I'm so sorry this has happened to you. I hope that over time, you will heal. I cannot even fathom what you are going through. I won't pretend to try. I pray for peace and healing for you in time.