May 18, 2013

Celebration

It's been three years almost exactly since our precious daughter was diagnosed with stage 4 High Risk MYCN Amplified Neuroblastoma, and by the grace of God successfully journeyed through surgery to remove her primary tumor, 5 rounds of Chemotherapy, 12 rounds of radiation, a stem cell transplant and 6 months of immunotherapy (CH 14.18) to come out at the end " No evidence of Disease " and has remained in remission for 1 year and 10 months. Through the highs and lows of her journey God has remained faithful and we stand here three years later Testifying of his goodness to us through the good and the bad.  He held us.  We did not know how our journey would end and yet He taught us he was enough!  We still do not know how our journey will end as she still has three years of scans and watching as relapse is common with her aggressive form of Cancer.  However our hope is in Him.  In 3 days it will be three years to the day that our lives were forever changed and yet here we stand celebrating a huge milestone!  Thank you , Jesus.  Halie lost ALL of her immunizations when she had her stem- cell transplant and for an immune compromised child that is a serious issue.  She had to start all over again and so for the past year and a half she has every month went through catching up on 6 years of shots! On top of extensive dental work and scans every three months, with an array of other post treatment appointments ( have I mentioned my daughter is Amazing ) Well,  Thursday she had her last set of "catch up shots" and Friday had her last catch up dental work (from damage done because of chemo) :))))  It is likely she will have many more battles with side effects in the future but for today we are celebrating!!!!These may not seem like huge Milestones to most for our precious girl these are HUGE!!! 1 less dr. visit, 1 less ouchie! We go back to Texas Children's Hospital in July for her 2 year scans and hearing test but until then we have NO doctor appointments on the calendar for the first time in three years :)  for 2 months.  So today I want to praise God for his faithfulness to our family through the darkest of days and the mountain tops of days! I hope that as we are encouraged witnessing his faithfulness and love to our family (even when we could not always see it, my dear friends who are in the midst of suffering right now) you would be encouraged & would be reminded of his goodness and Mercy.   Thank you, Lord!!!
 Here is a post I wrote 6 months after halie was diagnosed and my prayer is that it would encourage those who are in the fight!

November 2, 2010


A note from Mommy!

My heart is too overwhelmed to say much today.  Halie is doing well  and getting stronger everyday.  Watching her battle for her life these past 6 months has taught me more about my Savior than any sermon I have ever listened to or book that I have ever read.  He is more trustworthy than I ever imagined and kinder than my mind can comprehend.  That may sound strange in the midst of this particular Valley but psalm 23 rings true in my heart and I rest in the knowledge that He alone is our shepherd and our only hope.    I have a poem and a song I want to share with you all today but before I do I want to leave you with a verse penned by John Piper.  I read in my quiet time today about his Sovereign Grace and wanted to share this one thought...."Not grace to bar what is not bliss, nor flight from all distress, but this: The grace that orders our trouble and pain, And then, in darkness, is there to sustain...."  May He sustain you in your journey......


In honor of our warrior

The Warrior by Terra (Leukemia survivor) written when she was in 8th grade following her diagnosis

The Warrior is a Child

Gazing in the mirror
I see a warrior's face.
Fully clothed in armor,
No fear and no disgrace.

A tear it never offers,
A smile it always gives,
No sadness does it show,
But what life it lives.

Needles going in
As blood is taken out,
But still no sign of pain,
No cries to make you doubt.

Each day you see this person,
And think that they're so brave,
Each day you see us laughing,
The tears are ours to save.

So when you see our armor,
And think we're calm and mild,
Remember this one thing,
The warrior is a child.

- Terra Phillips


 Halie at her 3rd Birthday just 1 month before diagnosis

 
Halie Nicole 2 weeks after her 6th Birthday!!!!!!!
 
 
 
 
 

This warrior is a child by Twila Paris

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child

Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and and cry for just a while
'Cause deep inside this armor
the warrior is a child

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor
Deep inside this armor
Deep inside this armor
The Warrior is a Child