Justin Issac

Our sweet friend Justin has left this earth to rest peacefully in the arms of his Heavenly Father. While we know he is healed and will never hurt again, his family's pain has only really just begun. I ask that you, your families, your churches today please remember this precious family as they try to deal with their loss and eventually learn to live again.

Family Fun Night

Since Lucy's illness, we have really had to slow our lives down.  I mean REALLY slow down.  And, imagine this, we are loving it.  We look forward to our Friday nights at home.  The girls pretty much declare Friday night movie night, even if that just means watching a little Disney channel before bed.  I forget about dishes, laundry and other chores that need to be done and we just snuggle on the couch or play games, or whatever the girls choose. 

Jack gets outside time with Daddy...

Last Friday, Ella planted seeds that she picked out with Daddy...

Lucy practiced being a little mommy...

 And so did Ella...

 Lucy and Daddy made cookies (I just take pictures apparently)...

 (look at that hair!)

And Ella practiced her organizational skills (she IS my daughter)....

Today

Today was a busy day.  OT for Lucy, a quick visit with my sweet Maddie girl, homeschooling (Mrs. Cissy is out of town this week), tumbling, church, bath/bedtime and then exercise.  However, we did manage to have some fun:

 (Jack discovered playdoh)

 (we are creating a word wall for Lucy to help with her site words.  Mrs. Cissy and Mrs. Beverly will be so proud!)

At the end of the day, this little girl was tuckered out!  Today, I am so grateful for every breath my three children, wonderful husband and I take. 

A Question of Faith

I recently received an interesting comment.  I actually received it about 2 weeks ago and just didn't know how I wanted to respond to it.  At first I thought I would just ignore it, but it has been weighing heavily on my mind.  And let me preface this by saying I have no idea if I am giving the "right" answer.  I am sure there are Biblical scholars out there that could espouse eloquent and scripturally based commentary for hours on end.  I am neither a Biblical scholar nor an eloquent writer.  So here goes....

The comment: "My only concern with placing everything in God's hands as Ella implies is that if something does not work out as hoped the blame is on God and that is quite a burden to place on a young child. How does your religion handle this? How does a young child ever have trust again in God if something tragic happens and all the trust had been placed in God?"

My response (even now I am stumbling over my words): 

The word that stood out to me most of all was trust.  Although I absolutely teach my children to trust God, and they do, we choose instead to emphasize to our children to have faith in God. 

"Now faith is being sure of what we hope for and certain of what we do not see."  Hebrews 11:1

We are faithful to our belief that God will heal Lucy.  We are certain that even if her healing were not to be on earth, it would be in heaven.  Faith allows us to believe in a merciful God, a loving God and a forgiving God.  A God who would never for one moment want us to suffer or experience hurt.  But because we live in a fallen world, we are no longer immune to the trials of this life. 

Ella has received Christ as her savior.  In that very moment that she had her salvation experience, God changed her heart forever.  As a person of faith she has been filled with an unexplainable peace that a relationship with God brings.  As much as I hate to say this, it's the only way I know how to sum it up;  Unless you have faith, unless you have experienced true salvation, you will never understand what faith means.  Unless you believe that there is life after our time on earth and unless you trust that God has prepared a place in heaven for you, then you can't understand how another person can walk through fire with grace.

So, what if things don't turn out for Lucy the way we pray they will?  What if we lost another loved one in our lifetime?  What if we suffer loss on many other different levels?  What if?  What if?  We choose not to live in the what if.  We choose to live in the now.  And if the what if happens, we will be renewed through our faith in God.  He will restore our souls.  He will make us new. 

Will we hurt?  Of course we will.  I cant even imagine the hurt we would feel.  When I think about what Justin's family is going through, I literally yell at God for them, beg God on their behalf and cry out for mercy to a God who promises to answer our prayers.  And He will.  When Justin's work on this earth is done, he will go home to his Father.  Until then, we continue to pray.  Because we have FAITH that God is working. 

A child will learn to trust again just like an adult will.  Time, prayer and more time.  The relationship that is made at the time of salvation is the purest relationship one can ever enter.  While a Christian mourns, experiences anger, questions God and searches for meaning in their despair, God will never turn His back. 

Romans 8:38-39 
For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

When I was 8, a little girl that was as close as family passed away in a tragic accident.  I will never claim to know what her family felt and I can say without a doubt that they still mourn the loss of their daughter.  I truly grieve for them now in a way that I could never have were it not for this experience with Lucy.  But as a child, my understanding of her death was much more innocent than it is now.  I remember a close family friend explaining to us that she had passed away and explained that God needed another angel in heaven.  My faith was not shaken as an 8 year old, although I mourned in the way that an 8 year old is capable.  More so, my faith was renewed by the example that was set by the Christian adults in my life.  Those that did not lash out at God.  Those that chose to turn to God in prayer and seek His help in understanding.

I pray that if our family is ever faced with this situation, Erik and I would set an example of Faith for Ella and Jack. 

So, that's my answer.  It might not be a good one, but's its all I have.  My friend Kristie wrote this on her Caring Bridge site and when I read it I was humbled and ashamed of the fear and anguish I have experienced over Justin's situation.  This woman is a mighty example of what it means to be a Christian.  Could you imagine going through this situation without faith and trust in God?  The testimony that Kristie will have will be immeasurable in human terms. 

"Battles are fought and won in many different ways. Just because my child is going to heaven does not mean he lost by any means. If anything, he has gained. " Kristie T.

Where We Have Been

I promised we have not dropped off the face of the earth.  It's been really, really busy around here.  So much to be thankful for.  So very appreciative and grateful for a full and busy life.  Out of respect for my sweet friend Kristie, I have chosen not to post about our life right now.  I just don't feel comfortable with it.  So, with that being said, I am going to keep this post short and sweet.  I would ask that you please continue to pray for Justin and his parents.  Justin was sent home over 3 weeks ago and was given about a week to live.  His parents are suffering along with him.  They desperately need your prayers. 

And, if you are inclined, I invite you to keep checking this blog.  I will start updating more in the days to come.  I have lots of pictures to upload and lots of stories to tell. 

Here's what we've all been up to:

• Lucy has gained 2 pounds!  Shouts were heard around the hospital.
• She and I were at St. Jude the past 2 days for 3 months/annual testing.  Long, long days.
• Ella is no longer in a size 7 slim.  Thanks to tumbling she is now one solid muscle and has graduated to 7 regulars!  This probably seems like a crazy thing to post, but it is a huge deal to us.
• Jack is finally trying to talk.  LOVES to sing and can tell you where his nose is and is a master copycat on the tumbling mat.  My girls were practically reading by 16 months (yes, he is now 16 months), but I'm not too worried.  He seems to just be quite content to groan and grunt.
• Lucy is getting settled into her new tutoring schedule and seems to love Mrs. Cissy.  Harsh realization that she is really behind her class, but we are committed to getting her caught back up before 1st grade. 
• Ella made all A's on her report card.  Way to go baby girl!
• Erik and I are prayerfully considering our next move on the charitable front.  We have lots in the works and I look forward to revealing more details soon.

• And best of all.......the 2nd Annual Go Lucy Go 5k is being planned.  More details will follow, but we are really excited.  It is going to be bigger and better this year and we are pumped!

Faith of a Child

Ella's card to Lucy.  It says "Dear Lucy, I no (know) you love God so I trust in you (Him) to get better."

I know she meant she trusts in God to heal Lucy.  Because she does.  They both love Him so much.  Their faith rekindles mine every day.

Results

I've finally allowed myself to breathe and the news is slowly sinking in. I am happy to report that by the grace of God Lucy received a good report today.

Thank you all for the blanket of prayer that you covered our family with today. Your prayers are what kept us moving today. I will be honest and say that for a long time I have felt as if these scans we're going to be ok. However, starting this week doubt had begun to creep into my mind. By noon today I could hardly breathe. The weight of fear that weighed on my chest made it hard to even move.

We know that today was only one step in the journey of many, many miles but we are rejoicing in today's victory. Praising God for His gentle mercies and answered prayers. Thanking God for the miracle in my sweet Lucy.

3:10 pm. Headed home. Now the agonizing wait begins.

11:17am. Lucy just went back for scans.

Lori-

Lori- go to Amazon and do a search for Brooklyn Tabernacle Choir.  They have several CDs and I know you will find one (or two) you will like!  I will pray for your husband and you as well. 

The Art of Distraction

Tomorrow is Lucy's scan day.  Scaniexity has set in.  I am not nervous, just anxious.  So, today my only goal was to keep myself busy.  The morning started with early tutoring for Lucy and a haircut for me, followed by a few errands run in town.  Thank you Phil Ramsey for my gorgeous picture of Jack and a special thank you to Camille for the very nice gift.  Thank you notes will follow. 

Then we headed to Memphis for dentist appointments for both girls.  Ella was scheduled to have her upper appliance taken out and guess what else....

My baby girl got braces.  I think they make her look so old.  My heart is a little hurt tonight.  My baby girls isn't my baby anymore.  Ugh.  I HATE it!!

Lucy was scheduled for a teeth cleaning.  I was really dreading it for a couple of reasons.  One, she hates to have her teeth brushed.  I think they are still so sensitive due to not being used for so long that she just cries every time she sees a toothbrush.  Secondly, there were many days in the hospital when brushing teeth was just a battle I didn't fight.  Erik and I were prepared to hear that she had many cavities and that her teeth were in horrible shape from the acid erosion from vomiting so much.  Thankfully, in nothing short of a miracle, her teeth looked great!  No cavities, no tartar buildup.  We will consider this a small victory for our team!

Next, we headed to Hobby Lobby for a few activities to keep us busy tonight.  I made hair bows for Lucy's hats.

Then I came home and helped Erik hang the new picture of Jack, put laundry away and sewed Cabone rings on Lucy's blackout draperies in her room. 

Oh, and I prayed a LOT today.  Alternating prayers for Justin and Lucy, I found myself talking with the big Man more than usual.

And on another note, Lucy won't leave the house without at least 2 blankets and 3 stuffed animals.  She's so cute!

And Jack plays so hard every day that he is likely to fall asleep anywhere, anytime!

I thank you all in advance for your prayers tomorrow.  I wish I could begin to explain what I am feeling tonight, but I can't.  So I will only say that my Hope is in the Lord and my strength comes from Him, too.  The prayers going up for Lucy now and tomorrow will help us make it through the worry and wait. 

Thank you for loving my girl!

Sisterly Love

Taken with my phone at 1:00am this morning.  Melted my heart.

Hard

Today has been a hard day.  For Lucy and for me.  She is having a hard time adjusting to the new feeds and complains almost constantly of a tummy ache.  It's so hard to see her hurting, but I know she has to eat.  It's like rehabilitating a broken leg.  It hurts but you have to push through to reach the desired end results.  She will grow accustomed to eating again.  It's just going to take time. 

I'm afraid I'm beginning to come across as a little unstable these days.  One day I'm up, thinking about how great Lucy is doing.  Then the next I am down.  Today, and tonight, I'm way down.  Like crying so hard my head is going to explode kind of down.  I'm really, really pissed off about cancer tonight. 

This is a horrible picture of me, but I think it truly captures exactly how we both were feeling today.  We were sitting in the big chair in E clinic.  Lucy crying because her tummy hurt and me sobbing because for whatever reason the weight of every mother in that hospital seemed to be on my shoulders today.  I met two mothers this afternoon who have been locked in their children's battles for a while.  One mom who's son has missed his whole high school experience thanks to Medulloblastoma.  When she was telling me this, I cried.  In front of this total stranger, I cried and fought back the urge to scream.  I hurt for her son so badly.  Then I cried for the kind lady who was snuggling with her precious bald headed 15 month old who hadn't seen her 3 year old much for the past year and who is about to journey to the other side of the country for more treatments.  I don't know what it was about today.  I have walked the halls of that hospital for almost a year now.  But today was different.  I ached and cried for every parent, every child and every sibling there today. 

I also cried as I thought about the last time I saw my precious friends Kristie and Justin.  They were sitting in the chairs beside me.  I don't know it I will ever sit in those same seats again.  That is just a sacred memory to me.  I literally felt as if someone was wringing my heart with their hands as I prayed for my friends.  If I could carry Kristie's burden for even 1 hour I would.  I would love to give her the kind of rest I know she so desperately needs.  I would love to provide the strength I know she is searching for right now. 

After I brought Lucy home from an all day excursion to the hospital she collapsed on the couch.  I could tell she didn't feel well and quickly realized that she was running a fever.  So, back to Memphis she went.  Erik took her so that I could actually be home with my other two for a few minutes before they went to bed.  When I got her off the couch, she was crying and pleading "I just want to stay at my house."  My almost 6 year old baby is really starting to get tired of it all.  She just wants her normal life back.  She cried all morning because she can't go back to school right now.  She was so mad at me for the longest time today.  (a Rocephin shot and fluids was all she needed tonight, but she did have to get "stuck" for the 3rd time today.)

My sweet Ella is starting to ask a lot of questions about Lucy's cancer that I really am not prepared to answer.  I just don't know what to say.  When she boldly asks "Will Lucy ever have cancer again?" I don't know what to tell her.  I don't want to lie to her but I also don't want to add any more worries to her sweet heart than she already has.  She's a worrier by nature, but she's also crazy smart.  She knows so much more than I realize.  After Friday, Erik and I know that we need to sit and talk with her about some things.  We've just got to get Friday under our belts first. 

I was talking to my friend Leigh tonight about the feelings and emotions I was dealing with today.  I told her about meeting the two new ladies and the conversations that we had.  Leigh reminded me of a time in my life where I wrote about knowing there were hurting mothers at St. Jude that needed someone to talk to.  They just needed someone to connect with.  I wasn't ready then.  I was selfish and mourning in my own way.  I don't feel bad about that either.

But now things are different for me.  I don't usually seek people out to talk to, but I sure am willing to be a set of ears.  And I have no problem sharing a tear with a total stranger.  Because what I've learned is that when you enter the walls of St. Jude, when you walk the halls as a mother, you are a part of a bigger family.  A family whose common bond is fighting like hell to see their children survive.  The tears, the anger, the fear...those are the common threads that knit us together.  At one point in my journey as a cancer mom, I couldn't carry anyone's burdens but my own.  Now I realize that I don't have a choice.  I might not personally know every family that walks through those hospital doors but I don't have to.  I am living their nightmare with them every day. 

Thou, O Lord

Tonight I am so thankful to be here.  In my home with my family close by.  Today we were able to all 5 make it to church.  We stayed for Sunday School and "big" church!  It was wonderful to be in the house of God today.  Our choir was filled to the brim and I honestly thought that they would blow the roof off of the building as they sang today.  Wow!!  What a blessing.  "Thou, O Lord"

Psalm 3:1-5
King James Version (KJV)

1Lord, how are they increased that trouble me! many are they that rise up against me.
2Many there be which say of my soul, There is no help for him in God. Selah.
3But thou, O LORD, art a shield for me; my glory, and the lifter up of mine head.
4I cried unto the LORD with my voice, and he heard me out of his holy hill. Selah.
5I laid me down and slept; I awaked; for the LORD sustained me.

Our pastor today challenged us to learn through life's difficulties.  Clearly, this was one sermon that I could benefit from.  As I listened to him speak, these words kept ringing in my ears "I am Committed to the Blessing of my Crisis."  Everyday I realize a new blessing as we begin to lift our heads out of the murky waters.  I look forward to watching His mercies unfold, as I wake each day and wait patiently for the blessings that will come from Lucy's illness. 

Tomorrow morning we start a very busy week.  Honestly, I am very thankful for a packed calendar.  Friday is Lucy's scan day and I when I allow myself to stop and think about it I start getting sick.  So, I am going to keep myself really busy this week.  And when they doesn't work, I'll just spend a lot of time praying!  Lucy begins her work with her new tutor in the morning.  I am happy to have found Cissy and I know she is going to be the perfect fit.  Thank you to ALL the many people who emailed me, texted me or messaged me about this situation.  I honestly did what I said I was going to do.  Which was nothing.  When Cissy called, it just felt right.  I am so humbled that so many of you were willing to help. 

After tutoring we head to St. Jude for a weight check and electrolyte check.  The rest of the week will consist of school, PT, OT, church, dentist visit for both girls, tumbling and most importantly.....a visit from Erik's parents.  The girls are already counting down the days!

We are Home

I'm happy to report that Lucy got to come home yesterday afternoon. Just in time to pick up big sister from school! Both girls were trilled. I thought Ella was going to jump into my lap through the car window when she saw me. It was so special.

We all snuggled on the couch last night and watched a movie and enjoyed every minute of it.

Thank you again for all of the prayers for my girl and our family. We are headed to Ella's basketball game this morning, followed by a pottery party for Lucy!

Adventures of a Wagon

I'm sure this will not amuse anyone but me, but today we had many adventures with a red wagon.  Jack came to visit Lucy and me in the hospital and let's just say it was....well, exhausting.  That boy is into everything!  He punched every button he could find in Lucy's room.  I finally ended up just letting him pull this huge red wagon down the hallway.  It must have been twice as big as him, but he man-handled that thing like it was a stuffed animal. 

He couldn't even sit still when he was buckled in the wagon!

And then I figured out I could attach Lucy's pole underneath her red wagon and we could stroll alot easier. 

Last night Lucy's blood pressure dropped to 80/18 at its lowest point.  We had every doctor in this place in our room trying to figure out what was going on.  She was totally a-symptomatic, but still there was an obvious issue.  We never figured it out, but she did have to have a new IV at 1:00am.  That's 3 days in a row for a new IV.  Her little hands and arms are black and blue! 

Lucy is doing great with her feeds right now.  Her body seems to be adjusting well and tolerating this new influx of calories.  If all goes well, we hope to be home by tomorrow afternoon.  Thanks for your prayers!

Mercy and Peace

Mercy and Peace. 

Two words that cross my lips countless times a day.  Those are the 2 things I pray for on a continual basis these days.  As I pray for Justin, Matthew and Brandon I utter those words with such conviction that I sometimes feel as if my heart will explode. Three children who are coming to the end of their battle with this horrible monster called cancer.  Three sets of parents who are living the worst imaginable hell possible.  Three families who will never, ever be the same.

I pray for mercy on the children and I pray for peace for the parents and families. 

Mercy--something that gives evidence of divine favor
Peace-untroubled, tranquil, content

Can a family living this nightmare even come close to feeling these things?  I truely believe the answer is yes, but only by the absolute grace of God. 

Today I am adding two more children to my prayer list.  I hope you will do the same.

--7 year old Eli Williams, from Athen, Ga, is at LeBonheur this morning having surgery to remove as many tumors as possilbe from his brain and spine.  Some of the tumors they know are inoperable.  I was told that the family also has 3 other children at home that they are leaving behind. 

--A mother who's 7 year old was diagnosed with a brain tumor contacted me today.  How humbled I felt as I shared any piece of advice I could with her.  My heart broke for her as I know what road she is traveling down. 

Cancer is an evil monster.  I will never, ever understand it.   I will never, ever accept it.

The Death of Pretty

http://www.ncregister.com/blog/the-death-of-pretty

As a mom of 2 girls I found this article to be pretty eye opening.  It is so true.  Pretty is dying.  You should read it.  I'd love to hear your opinion.

Day 2

Lucy had a really rough night last night.  She had a horrible time emptying her bladder, so around 11:00 pm the nurse came in to do a Foley.  I think it must have scared Lucy enough that she finally went a tiny bit.  It wasn't enough, but it kept the cath away.  Lu finally asked to pee in the bed (which meant a bed pan) and after that she was much more comfortable.  We did have to wake her every 2 hours to make her potty.  Then, on top of that, her vein blew where her IV had been placed and it took 2 nurses and 3 sticks to get another stared at 4:00 am.  We finally got some sleep between 5-9am. 

Today started off better, but she was in a lot of pain from her surgery.  The Dr. had warned us that due to the fact that she was so skinny, she would probably be in a little more pain than the normal child.  Imagine that, Lucy being anything but "normal." But her pain was well maintained and she managed to spend some time playing on the computer and playing with her sticker book.

Tonight we are really watching a low blood pressure issue that she has developed.  The Drs. aren't too worried about it, but it is making me very uneasy.  I am so very tired, but I just can't sleep until I know that her pressure is coming up.  We are going to check every 30 min until we see it come up and then stabilize. 

I got to meet with my sweet friend Kristie and her husband Jerry tonight and was able to love on Justin for a minute.  It wasn't long enough.  Please say an extra prayer for them tonight.  My heart is bleeding for them tonight.

Random IPhone Pics

The girls and me with our new baby cousin, Baylor.

A special doctors visit with friends.

Riding to East Tennessee for Christmas. 

This is one beautiful baby.

Lucy and Ms. Beverly

Lucy and Mrs. Charlie