This was first MRI - All Children's Hospital (04/06).  You are looking down from the TOP of her head.  The image is the base of her brain.
I have had many people say to me…  “I can’t imagine what you have been through….”  If you want to know… then read below.  I stumbled recently on a journel, a journel I didn’t remember writing.  I was looking for a book – and found one and opened it up to my surprise my words, words of the first few days of Niks diagnosis.  Handwriting so bad, only I can read it…  I don’t see any but I imagine tears have soaked up some of these pages.  Please don’t expect to read something that is poetry… or even nicely written.  The misspelled words are mine – these fragment and run on sentences are all mine.  The first time I read it – I cried.  I cried because I remembered it all.  But – after a few days I thought – WOW look how far we have come.  Look at my baby now……  This motivated me to see the original MRI scan (yes – the one mentioned below).  I was ready.  The first time I saw this scan I got physically sick – every time I walked by a monitor with it on meant a quick bathroom stop.  I got sick at the mention of the word Tumor.  I am ready now – Nik is ready.  We ordered the scan on disk and I picked it up today.  The tumor is LARGE – it is at the base of her brain.  The doctors said it was the size of a racket ball….  You can clearly see that. 

It started with four little words.  Words that at first meant (I thought) nothing, but, “my arm feels funny” meant much much more.  Shortly after the arm comment – which I stupidly said, “your arm is just asleep”, did the next comment scare the life out of me.  “Mom my face feels numb” this was said with a definite slur.  I immediately called Howard and then put Nik and the boys in the van.  As I put her in the van I said, “say the alphabet”, I can’t remember exactly what letters she did manage to say and in what order but it was NOT RIGHT!  I ran back in and told Howard I was on my way to St.Josephs ER.  He said he would meet me there.  At this time Debbie arrived for the scheduled shopping trip, she followed us to the hospital.  At the ER when checking in they mentioned her blood pressure was high but what scared me the most was her disconnected appearance and her confusion on easy questions – such as what is today, when were you born, where are you.  Some she answered and some she consistently answered wrong.  I was in tears.  I knew something was terribly wrong but was holding on to every hope that she was just really scared.  St.Joes was great – we really didn’t wait too long to get pulled back.  We waited just a bit to see the doctor who assured us that this was probably just stress or anxiety.  Howard was relieved with this answer but deep deep down I knew something was wrong.  The doctor ordered a CAT SCAN just for precaution – and our life changed.

It didn’t take the radiologist long to get the scan to the ER doctor who had the nurse call me from the room.  Howard was immediately called along with a few other people to start praying.  I was told, “We are sorry to tell you this but your daughter has a rather large tumor in her brain”.  My stomach turns just reliving this.  I kind of jumped forward a bit.  Let me back up.  While we were waiting for the CATS SCAN she fell asleep hard (like she does after a headache).  I didn’t think anything of this but the nurse did.  They were surprised at how HARD asleep she was.  Once they wheeled her into the CAT SCAN room and those few minutes waiting and praying – the door opened.  I felt something from the way the two x-ray guys looked at me and at her.  The one young man said, “You don’t have any other symptoms?”  I thought how odd for an x-ray tech to ask that and flags were thrown up.  Once Nik was rolled in and acting herself – actually she looked ready to leave.  I mentioned to Becky (who came to sit with me) that I was concerned by the comment and body language of these two men…  Before I can even say this to her – I was called out for the worst news of my entire life.

Words can not express the love I have for this child.  Heart, soul, body and mind – How could God send his Son to die for my sins – because I just can’t imagine…  My baby – my doll.  This just can’t be happening.

Before long the hospital was full of loved ones.  Just to name a few besides Howard and myself, Becky, Kim, Grandpa and Brian…  We had already sent Debbie home with the boys.  I am not sure what kicked in because I really wanted to crawl in a hole and cry but I called a friend / coworker Erin and pleaded with her to answer her phone (it was late).  First time she didn’t answer but the second time she did.  I asked her to help with getting my employers (doctor group) involved in getting Nik transferred to All Children’s Hospital.  I don’t really remember much else except the pleads I called out to God.  Pleads, prayers, begging and dealing – I was willing to do anything for my girl.

Somehow some way we were taken by ambulance to All Children’s Hospital.  Nik knew then, in her eyes I saw fear.  Fear she probably read from my eyes.  I tried to be strong – I tried to show no fear – but it just wasn’t possible.  This is my baby.  Ambulance guy was great.  He treated her like a princess.  She was scared but looked like a typical little 10 year old, clutching a rabbit (a gift from St.Joes ER).  Some how that TUMOR made a home in my baby.  I was angry I was sad; I was and still am scared.

Once we made it to ACH, things moved quickly…from the ER visit to the move to the room were steroids were given to keep the swelling down.  The first few days waiting for surgery were surreal.  I was here but not really.  We explained little to her.  I think because we just didn’t know what to say…  Who would?  The first time I had without her was when they sedated her for her first MRI.  As soon as I rounded the corner – I lost it…  All the fear of losing her and grief of just everything came rushing like a pack of hungry wolfs.  I was devoured in a matter of minutes.  Ate up with it all.  Just utterly miserable.  No one can understand the TOTAL feeling of these words unless they experienced the same fear of losing a child – FOR GOOD!  I don’t remember much there after except a brief ER visit for myself.  The drugs helped.  Whatever was given was needed.  From there to surgery.  During surgery (which I did medicate myself) was long but my sister kept me busy with making pink and purple ribbons for everyone to wear to remind them to pray for Nikki.  The doctors did come out and did say some things – the two things I do remember are – we got it all – and – it appears malignant.  Much of the visit to her in the ICU area is a fog.  Days later a nurse walked up and mentioned that I looked better and I said thanks and asked her where I knew her from.  She said she was Nik’s recovery nurse and for the life of me – I can not remember that room – or time at ALL.

Lori flew in sometime after that and stayed with me.  So many people have done so much for us.  Kim with her ribbons and efforts on notifying everyone to pray for Nik.  Becky for being my shoulder and really for walking me through the motions.  Debbie for her words, prayers and care of my boys.  Actually my cousin Cathy was a blessing too.  I really haven’t done that much with her before this except for family functions.  But she just went through the loss of her baby grand daughter at this very hospital… whatever drove her to help me – was a blessing.  She too was very helpful for those days of surgery and recovery.

Nik has many many loved ones; I was told one day she had 57 visitors.  She has touched more lives in her short 10 years than I have my whole life.  From school, church and family – this girl is loved.  We are not going to lose her….

LORD, thank you for my many blessings but I pray for your help in moving this mountain.  Please move this mountain for Nikki, please…….  Amen

Today I sit not sure of the day or hour but I sit with hope.  My girl needs to continue to touch lives she needs to continue to be a witness for God.  I am looking at her now and her beauty on the outside does not touch the beauty on the inside.  She is a great great little girl.  So thoughtful and so sweet.  I really can’t take credit for that as that was planted by God.

I was angry at first then I was just too tired to be angry.  I know all the stuff “church people” say... God doesn’t give you what you can’t handle.  God must have a plan for her, something’s we may never understand, and so on and so forth….  Somewhere I did muster the strength and comfort in knowing…

My God is good.

My God loves this little girl.

Good things can come out of bad things.

I hold on to that with all my will right now.  Uncertain of our financial future, uncertain on how these treatments will affect her little body.  But certain that she loves God.

I hear the beeps and blurbs from the monitors, I watch her breath, I pray, I pace, I get sick and run to the restroom…  This is my life right now.

I miss the boys; I miss the everyday things the most.  Jared and his skateboard, William and his NiteNite.  Nik and her love for everyone.  I dream of being home – kids playing me cooking.  Normalcy, I know that we now have a new NORMALCY – or will have a new one….  Once we get started the count down for the end of treatment will begin.  But first, it is Sunday night and under the soft hospital light and the soft blurbs of her monitors, I wait.  I wait for the final test to see if the tumor really is gone for good. 

LORD, I ask you right now – please take that tumor away if any is still there please remove it for good.  Please let the swelling and bleeding be gone…  Please, please, please – Amen.

This pray will be said many many times today and tomorrow too.  Right now I have a headache – and my eyes are heavy.  I wish I could sleep, I wish I could just forget for a moment all of this.  I can’t!!! I want my baby back so much.  I want her everything, moodiness to sweetness – I love her.

She is still drowsy today – still sick to her belly.  We hope some change to medications will help.  We pray they do.  The test (Thallium Scan) will be done today.  This test will tell us if any tumor is left.  Again – Lord – you know my prayers…..

I looked out the window and the trees and sky look wonderful.  Just like any other day before this, somehow I think everything should stop.  The world should PAUSE while my baby gets better.  I am jealous of this squirrel he or she is climbing in a trash bin – no worries at least not like this.  I see workers coming and going again thinking I wish today was a regular day for me too.  Somehow my regular day will never be the same.  My day to day complaints pre surgery seem so stupid so minor now.  I would give anything to go back to that now.  Anything.  Debbie and William are coming up – then Kim and her kids. I miss my family; I miss the day to day.  She is sleeping and looks very rested….  I am tired.

This is dedicated to my God (thank you for being my rock).  To my family – I would not have been able to get through this and be the Mom to Nik and the boys that I needed to be with out each and everyone of you.  Lastly, my baby, my doll, my daughter – MY HERO!