Before we go ....

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I wrote my update about us leaving Monday below this one-- its 10:36pm Sunday .... it has been a really long day .... sometimes its just tiring .... I think I hit the wall when my oldest wanted to make something in the oven and almost burnt his hands and I waited with him with tears in my eyes and finally hung my head and apologized for all the times I am weak - is it fair for a 12 year old to console his Momma?

I was sad today and haven't slept well in I can't remember thinking about Nicky being poked and keeping it in and managing the daily routine they expect of him and thinking I AM SOOOOOOO "Bllllleeeeeep"ing sick of this @$#%!  Can I be human ever ! Then my dad called to pray with me and I could hear his tone how sad he was for me - wishing he could take this from me and he can't ..... while I could barely breath through my tears and I just kept saying I am so sick of him going through this and being so afraid.... I hate cancer ..... I know my Dad knows  how painful it is to hear me crying and not be able to fix it for me .... its the same way I feel with my Nicky ....and my summer has been consumed by it, yet we truck along make plans, smile and try our best to ignore the beast that is considered a possible passenger we never want to ever endure again.

I was sick to my stomach reading an update of another mother today that lost her teenager 6 months ago ..... the local paper, nor the school, or his friends even recognized his absence from the gold league - something this young man LOVED  and what a horrible feeling for her to endure, and Aaron Bell is her only child ..... I found myself so emotional over it ... sad .... I told another friend I mentioned I had to go to St Jude and they said again? aren't you done ...? WOW .... I sure wish there was a DONE and HES GREAT ..... I want people to stop being ignorant .... at least the people I know, just because hes not on chemo or bald doesn't mean we drop our guard,.. what a hard weekend ... did Nick and I miss things we would want to do YES!!!!! But getting past this boulder once again is all we can see ... so HELP US ... PRAY that MOUNTAIN MOVES .... please ..... Faith is tough ---- the hardest lesson is blind faith and we repeated get the same test ..... help us ---- pray for us to let God sustain us .....I told my Pastor sometimes its a stranger and sometimes its our church but we need it to carry us all so please ... keep praying .... we need this so very much with the babies coming .... GOD BLESS AND READ BELOW ....

Summer Update

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Hi all sorry I haven't updated lately! This summer seems to have flew by and well I have watched Nicky like a hawk! We leave for St Jude on August 26 and he scans Tuesday August 27 at 10:30am Memphis time. The amount of scaniexty for this scan is simply nothing to compare to any other time. I feel very on the edge at all times. Then I watch Nicky and it calms me. He's in love with CARS from Disney Pixar and like his older brother has gotten into wanting to shop online when he see the new toys! Not a good habit at all - lol but that's our Nickybear.

In my last post, I told you that Nickys primary doctor had called the week before we were planning to scan July 1,2013. She called after a second review and said that they did not find this to be that urgent and gave us the option to wait till August.... moving forward we gladly took that option. I am not sure if scanning 3 weeks apart from our U of M scan would have given us any real answers. So everyone agreed to wait especially since he has no symptoms of concern. As I watched the calendar approach the month of August a tiring stress has filled me, I am praying more and more as this scan approaches that all is going to be well!

So how is he, he's growing, his appetite is the only thing that seems to be a hit or miss and he is one picky eater - though pizza is always his staple diet lol. He has grown about 2 plus inches since our last trip to Jude but I am sure his weight hasn't changed and I think that just comes down to being so picky. His personality -still shy with others but will now at least say goodbye to some. Around us, hes silly loves to laugh and is a funny kid! He tries to repeat everything we say and we are praying once his hearing aids are turned down and new molds are made he will use them. He is expressing himself more and he shocks us all the time when he says something new. He has great balance and his memory is spot on! He loves to play and cuddle. He loves his big brother! He still has tantrums like any 3 year old would, the only difference is he can't always express himself and these can be stressful and tiring.

We took a trip after the storm knocked out of power and headed to Bay Harbor for the 4th of July. We love it there and try to get there once a year with the boys. We got Nicky swimming again and that was a huge deal for us! We have a pool but it is not completely ready, it was suppose to be done 2 months ago. Gotta love contractors!

It's been a different summer due to the weather and waiting for this MRI as it approaches. Nick and I remind ourselves that this is in Gods Hands and this is all we can do is give it up to God and pray that they see even more improvement in his spine and ventricles and that the radial area of concern is no longer there and that he remains cancer free. We ask you to please pray for us a little harder this because mentally we need this scan to be great with our twins arriving soon. So much has happened so quickly, a new home and non-stop people working around the house and having a nursery ready times two! Nicky will also start early intervention program at the school that I will be attending with him, socially this will be a hard thing and a good thing.

We lost a lot of children over this summer, its been heartbreaking - Tanner S., Chris W., Aaron B., Hilary M, Asher L., Reese C. - I no doubt am missing a few - please pray for these families as you read this - please pray for an absolute cure for this disease.  Please pray for our Nickybear that those radial changes are GONE and that he remains cancer free!!!

My Lord, My Father,

I lift these families up to you and may you comfort them all. Please keep our Nicky Healthy!!!! Let us hear NED once again please Jesus, it is ONLY through your name we maybe petition our prayers at your feet - in your Almightly name AMEN!