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My 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.

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Amy Smolak http://www.caringbridge.org/visit/nicholasball posted a new journal entry, "Christmas again......".

Less than a week until Christmas… Finally got to deliver all the gifts ….The first set was on Monday to Wilson Elementary, Nic’s school. It was a sad but sweet ... Read more

Jacob's Dad -> Robert Murphy www.caringbridge.org/visit/jacobmurphy/journal signed Nicholas's Guestbook.

Just letting you know I have continued praying for your dear family each day. I got the feeling that today I should write to tell you. May God continue to surround you ... Read more

Jacob's Dad -> Robert Murphy www.caringbridge.org/visit/jacobmurphy/journal signed Nicholas's Guestbook.

              ✞ HAVE A BLESSED CHRISTMAS ✞ Hugs from our family to you and know that we continue to surround you in prayers."May the Lord bless you and ... Read more

Bobbie Bockovich signed Nicholas's Guestbook.

Dear Amy,So good to hear from you. We're so glad you were able to share with other families. Hope it gave you some peace. We think too, that Nic is looking in on you at ... Read more

Jacob's Dad -> Robert Murphy www.caringbridge.org/visit/jacobmurphy/journal signed Nicholas's Guestbook.

May God bless you for the loving compassion you shared with others. Sharing your heart with others this way is so sweet and shows just how much love you have to still ... Read more

Rosemary K. signed Nicholas's Guestbook.

 Hi Amy, Thank you for writing to us this Christmas. I looked at some of the photos again and remembered the stories that you told about Nic. The stories and pictures ... Read more

Jill Williams signed Nicholas's Guestbook.

I believe that as much happiness as your kindness and generosity brought those families, it also brought you just as much happiness to do it.  That is what Christmas is ... Read more

Amy Smolak http://www.caringbridge.org/visit/nicholasball added a new photo.

Marie Strolin signed Nicholas's Guestbook.

What a beautiful gift you are giving in Nic's memory, and especially sharing the love in your heart. God Bless You! love from marie in trumbull, ct Read more

Jacob's Dad -> Robert Murphy www.caringbridge.org/visit/jacobmurphy/journal signed Nicholas's Guestbook.

How sweet a gesture for those families .... and it isn't the presents that will mean the most, especially for the moms, but the gift of you giving of yourself that will ... Read more

Rosemary K. signed Nicholas's Guestbook.

As always, thank you for writing. I and I suppose a lot of other people wonder how you are doing.Good for you to be planning a nice Christmas for two families with ... Read more

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