Nash Family Blog

Happy Birthday My Sweet Mae!

Eight precious years ago today - at about this exact moment - I was being sewn back together while I held you, my second beautiful daughter.  

(Sorry, couldn't find a newbie pic right away.  If I find one I'll scan it in and post it.)

From the beginning you showed that you were strong willed and stubborn and going to have it your way.  You refused to be rocked or snuggled and constantly wanted to be moved from pack-n-play to bouncy to jungle gym to swing and back again.  You adored your sister and still do.  Best buds forever.

You have grown into a beautiful young girl.  As we finish second grade I am amazed at how quickly you've adapted to our new school routine at the Latin School.  Mae you can memorize like no one I've ever seen before.  It's amazing to watch you blossom.  

You are determined and strong.  Nothing will do but for you to master the task ahead of you whether it being teaching yourself how to do a perfect cartwheel or winning the 2nd grade spelling bee (you came in 3rd overall!  Great job baby!)

You are a nurturer giving comfort to those who hurt and help to those who need it.  This is your most beautiful quality.  

You have brought me more joy that I could ever imagine and I'm blessed to be your mother.  Happy Birthday my precious girl!

Love, Mom

A Dream Is A Wish Your Heart Makes....

Leah had a wish.  A wish to go to Disney World in December.  To see the castle lit for Christmas.  To have a makeover at the Bippidy-Boppidy-Boutique.  And thanks to the Lexington Dream Factory Leah's wishes came true.

It was sort of like a dream for her.  I've never seen anyone completely soak up an experience like she did.  She truly absorbed every moment for what that moment was and could not have had any more fun if she'd tried!  And the rest of us did too :-)

After pouring over lots of photos (over 500 to be exact!) I've compiled a photo album here.  Settle in and be prepared to experience a bit of our week.  

I really don't even know here to start in chronicling our trip.  I may have to just do a series of posts / stories.  Suffice it to say that you can't even begin to imagine how many people from Lexington to Orlando and everywhere in between gave of themselves, their time, their talents to make this the most unforgetable experience of our lives.  Thank you doesn't begin to do it justice.

I will leave it at Thank You to those who made it incredible.  I will promise to work on a series of short posts highlighting some parts of our trip.  For now enjoy the pics!

The Birthday Princess

Today you celebrate your 9th birthday baby.  You have a gentle and sweet spirit, a beautiful smile, a laugh that can't help but make everyone laugh with you.  You are kind and giving.  

9 years ago you changed my life forever when you made me a mother.  Your daddy, your siblings and of course YOU, Leah, are the best things that have ever happened to me.  We are blessed to have you and to be able to celebrate another birthday!  

I hope you have the most wonderful day.  You deserve it!  I love you - Mama

Good News All Around!

Leah went back to UK today for labs.  Great results!

Hemoglobin 11.7

Platelets 196,000

ANC 4690

Also, her physical therapist has said that it's time to sit down and discuss what we want our final goals to be.  Once we reach those we'll be released from PT!  She's making such fast improvement with her muscle strength and balance.  I wouldn't be surprised if we're done by spring!

Ok, so I'll leave you on that note and promise that I WILL UPLOAD PHOTOS FROM OUR WISH TRIP TO DISNEY!!!!!!  

1 Year!

A Happy Feast Day of St. Nicholas the Wonderworker to you all!

This feast day is exceptionally special for us.  One year ago today Leah received her cells from her sister!  What a life giving day it was!  The transplant was chronicled here and here.  It's been a long hard journey....

But Leah has strength and courage beyond her years.

God beautifully created her sister to be her second chance at life.  He held her tight as we fought through transplant.  And look at her now...

A beautiful living reminder of God's mercy and grace to us and of answered prayers.  

Rejoice with us on this beautiful day and offer thanks to God!

The Good, The Sad, And The Wonderful

This has been a particularly emotional few weeks for me.  So, so much to be thankful for and yet a bit of sadness mixed in.

We had a beautifully wonderful Thanksgiving.....beautiful and wonderful because it was NORMAL.  You can't truly appreciate the insanity of normal until you've been in the chaos of abnormal.  Abnormal has been our normal for the last 4 years.  But this year....this sweet year....we sat down as a family with everyone healthy to partake of an amazing dinner.  And we did so not once, not twice, but on 3 occasions without the slightest thought about low counts or basic viruses like the flu or a cold that could be threatening to us!  

A small cloud of pain hung over me though, threatening but not taking my joy.  Last Thanksgiving we were in a much different place.  One year ago today we rose early and made the trip with Leah to Cincinnati Children's Hospital for surgery to place a port and for the start of a very long and excruciating journey through her bone marrow transplant.  Last Thanksgiving was also the last time that I saw my mother.  We parted after dinner at our house with a hug and kiss knowing that she would faithfully pray for Leah.  

I think back on that period of time and my heart fills with pain and my eyes with tears.  I'm not sure that it will ever fully heal.  

Oh but the difference a year makes! To have my healthy beautiful daughter, to feel her hugs and her kisses, that fills me with such joy and thankfulness.  Our God, who so graciously gave her to me the first time, perfectly made her sister to be her chance at life again.  We are thankful beyond measure for His mercy unto us.  

It's a beautiful time of year.  A time to remember my mom, to be thankful that she was MY mom and for her impact on my life.  A time to be thankful for new life.  

My beautiful daughter....

And my beautiful mother:

I love you both.

Exciting Things!

Where to start?  There are so many exciting things, emotional things, BIG things to write about!  I think I'm going to have to take it one event per post....

There was only one thing that ever made being admitted to UK Children's Hospital bearable for Leah....Jarrett's Joy Cart.  The cart comes around EVERY tuesday at UKCH offering EVERY child an opportunity to select a toy.  EACH and EVERY time we'd walk onto the floor for an admittance Leah would look at me and ask me "Mom, what day is today"?  Tuesdays gave her something to look forward to.

Last summer Leah decided that since it made her stays bearable that she would like to help Jarrett's Joy Cart, which runs exclusively on donations.  Let me tell you, once Leah makes up her mind to do something she IS going to do it.  

It started with our neighborhood garage sale.  She pulled out toys to sell and we set up a lemonade and cookie stand (she made those cookies too).  I had my sale and she hung up a poster on the side offering her toys and snacks for donations.  She raised $75 that day.  It lit a fire in her and off she went.

A month later she did a similar sale at her grandparents house.  Then she sold pictures she made for $1 each.  

A lot of hard work.....and many kind donations later....she reached her goal of $1000.  To say I'm proud of her is an understatement.

A few weeks ago we had the pleasure of meeting Jennifer Mynear, Jarrett Mynear's mother and founder of the Joy Cart.  What a wonderfully sweet woman.  Jennifer and Leah set to shopping for the cart.  Here's a bit of their trip in photo:

Leah and Jennifer:

Two carts full of toys!

More shopping:

Checking out:

Friends....

So many people donated - from friends and family to complete strangers.  Thank you to you all.  You've helped ease the burden of a hospital stay for many children.  And I am happy to say that we have a bank willing to match her donations and many many more children will be able to enjoy Jarrett's Joy Cart.

This Thanksgiving I'm thankful for all my family and especialy for the life of my daughter.  My firstborn, whom I love so much it hurts, who God not only graciously gave life once...but twice...has a beautiful spirit of love, kindness and charity.  And once again I pray that God can give me the grace and wisdom to raise this amazing girl.

More exciting posts to come.....

Bieber Mania

It has been some crazy madness around here the last week as we (and by we I mean LEAH) anxiously awaited the event of all events.....THE JUSTIN BIEBER CONCERT!

Daddy managed to make her dreams come true by obtaining tickets.  I was voted most likely to survive a Justin Bieber concert and got to take her.  Actually being there and watching her was worth every second of Bieber pain that night.  Her reactions were priceless.  Allow me to show you....

This is what the face of a girl waiting for Bieber to take the stage looks like:

This is her reaction to the countdown....

 

Oh yeah....that's excited.

And so is this....

 

The look of pure wonder....joy....amazement....

And just because she's beautiful....

 

And when it was all done she immediately turned to me and said:

"THAT WAS AMAZING!!!"

I think it was her perfect night.

All Things Spooky And Wonderful

We'll start with Wonderful because .... well, it's fantastic!  I spoke with CCH today and not only did Leah's CBC lab numbers look good (ANC 3600, Platelets 185,000, Hemoglobin 13 and White Cells 5) but her Thyroid lab work looked completely normal!  In addition, most of her immune study had come back and she was listed as "essentially normal".  Which means that she is...well, essentially normal!  Functioning with a normal immune system.  What amazing news!  Some of her immune study was right on the cusp of what is considered normal, but they feel that in a month or two she'll be right in the normal range.

Did I just use the word normal an awful lot?  That's not normal is it?

This is where you hear us sigh a big sigh of relief and say a prayer of Thanksgiving.  What a blessing and answer to prayer!

Now for spooky....Ok, not really, but it is Halloweenie...it was our pumpkin carving night tonight! 

I like to call this Getting Dirty.

And this is more Getting Dirty.

Now we all watch intently as daddy carves out the masterpiece....

And then there is the aftermath....

But best of all the finished product!

(Daddy tackled the Mickey and Spikey Teeth pumpkins...Mommy took the simpler designs.)

I think they're pretty fantastic too!  And we had a good time to boot.  Now, I'm off to get some R & R and try to kick this cold before my alarm rudely awakes me at 5:30.  Good night!

Day +324: Nearing the 1 year mark!

Leah is nearing a very important date....December 6th marks 1 year post transplant!  What wonderful blessings we have seen in that time!  

Today was her follow up visit with CCH Neurology department for her headaches and since we are so close to the 1 year mark they decided to go on and complete her 1 year blood work while we were there.  

Dr. Kaboush (Neurology Dr.) has switched her medicine for severe headaches to something different since the Imitrex wasn't working.  We'll try out this new drug for a bit and see how it works.  Dr. Jodele (Leah's transplant Dr.) called tonight to report that her labs look fine - no worries.  She left me a voicemail since my phone didn't ring for some reason and so I'm left with a slew of questions (because I'm neurotic like that) that will have to wait until Tuesday when Leah's care coordinator is back in at the hospital. At least for now we know that her basic labs are good.  They are also sending off blood work to test her immune function at this point as well as labwork that Endicronology (thyroid people) has ordered.  Those tests will take a bit.

We will go back on November 13th to see Endicronology as well as have an Echocardiogram.  Both of these are tests that are done around the 1 year mark to check for any problems caused by either the high intensity chemo or the radiation.  

Dr. Jodele was pleased with how Leah looked and commented on how much she's grown.  Overall it was a good visit.  

Leah broke my heart last night though.....  As I tucked her into bed she said that she didn't want to go back - not to the hosptial - not ever.  She said she was sick of being at the hospital and seeing doctors.  She's been through so much and I reassured her that this was a good visit because she's doing so well.  Also that we will be seeing them less and less.  In fact they said that after the appointment on the 13th, if all remains well, they won't see us for as long as 6 months!  Good news indeed.

So there you have it.  I'll post more about test results and follow up visits as they occur.  I am so thankful for our amazing doctors, for your prayers and support - we could not have done this without you.  Mostly I am thankful that God has protected Leah and made her sister's body perfectly to heal hers.  Continue to pray for good results and for her headaches to continue to lessen in intensity.  Blessings - Sarah