December 28, 2011

Winter Wonderland!

Canada!  Banff Springs, Canada!  It was amazing!  Everywhere you looked it just looked like a Winter wonderland!  Magical.  An amazing time away for me and my sweet hubby.  It was honestly a second honeymoon!  God blest us with a free upgrade to a wonderful room with a fantastic view!  Here is what we woke up to every morning!  Beautiful!  The earth truly displays the glory of God!  Jason and I skied, snowmobiled and just had a wonderful time together! Thank you Lord for giving us this gift! I am so thankful for my sweet husband!

December 3, 2011

Time flies when you are having fun!!!!

     I cannot believe that Fall is almost behind us!  Football is over and we are full fledge into the Holiday season.  We have been having a blast! We started our festivities with Chloe Elisabeth's 9th Birthday Celebration!  She had a rollerskating Party, it was alot of fun!  Here are a few fun picts!

     The next weekend our family was invited to a Polo match with Texas Children's Hospital for Halloween and it was so much fun!  Here are a few of our favorite pictures from the day!

What a fun experience that was!  The kids were able to meet and get autographs from the Polo players and Miss Halie had her picture taken with the team!  Making memories that will last a lifetime!  Thank you TCH for inviting us and to the generous family who hosted us Thank You for having a soft spot in your heart for cancer patients and their families!  What a gift you gave us.  Halloween was the next night the kids had so much fun!  Aleks played his last 7th grade football game for the season.  It was bittersweet!  He loves football and has found his niche being kicker and cornerback.  He is already counting the days until next years football Season!  Chloe had a blast the cheerleaders invited her to come down and join them for a cheer!  It was alot of fun watching her cheer on her big bubba!

Here is a picture of the little ones all dressed up for Halloween!  They are sooo cute!  Thank you for your continued prayers and concern for our sweet Halie.  She will scan again at the end of January, but for now we will count every blessing and enjoy every minute!  Thanks to all of our bakers, generous donators & prayer warriors for the Neuroblastoma Bake sale we made over $2,600.00 at Friday's Bake sale!  We could not do it without you!  God Bless! 

Oh, Jason and I are leaving on a much needed time away just the two of us!  I don't know where we are going so I am so excited!  All I know is that it's about 17 degrees!  Wow!  And I will be skiing for the first time!  So blest to have a sweet hubby!  I will post pictures when we get home!!!! 

October 29, 2011

No Evidence of Disease! Praise the Lord!

"Enter his gates with Thanksgiving,
and his courts with praise!
Give thanks to him; bless his name!"
Psalm 100:4

     Halie's scans looked good!  No evidence of disease!  It does not matter how many times I hear those words it evokes in me the same emotions.  I remember going into Halie's radiologist appointment last September and reading the report from her scans and seeing the sentence.  No evidence of disease....  Amazement!  Awe!  Praise!  We are so undeserving of his mercy and yet he gives it!  We are so thankful and I know the reason I feel that same emotion every single time and experience the same fear every time we scan is because we know the nature of the beast we are up against.  I stand in awe of the Lord!  Thankful for Halie's life.  Grateful for the countless kisses, hugs and precious moments we have been given.  They are priceless and a gift from our Father in Heaven who loves to give good gifts to his children. So today we rejoice in the gift of Halie's continued healing.  Thank You, to all of our sweet family and friends who pray for her and us.  God bless you all!

here are few pictures from our week at the hopsital!

Psalm 117
Praise the Lord, all nations! 
Extol him, all peoples!
For great is his steadfast love toward us,
and the faithfulness of the Lord endures forever.
Praise the Lord!

October 24, 2011

Happy Fall!

Halie modeling at the TCH Fashion Show to raise money for the Cancer Center!

Meet Gracie!!!

Wow, I cannot believe it has been so long since I updated! Well, Fall is here and with it the busyness of life!  We are loving every minute of it!  Aleks is playing football for his first time this year playing Corner back and Kicker!  We are so proud of him!  He has been working hard and seems to have found his knish....  Halie modeled for a Charity event for Texas Children's Hospital and was a natural fashionista.  It was funny.  The night before she told me she was not going to do it!  No way!!!! The next day we get to the Beautiful ballroom where the event was a bit bigger than I realized, fully expecting her to say "NO WAY"  but as always such a brave girl.  She did it flawlessly and afterwards I asked if she was nervous and she looked at me and said "it was no big thing"  such a funny girl.  Chloe is doing fabulous at school she moved to Magnolia Parkway and is really enjoying school.  She saw an answer to her fervent prayers as Daddy surprised us one day and said we could get a puppy so "Gracie" (because Chloe said it was by God's grace alone we got her) has made a wonderful addition to our family. Chloe also turned 9 yesterday and we celebrated by going roller skating.  What an amazing blessing just being together. Enjoying the daily blessings God gives us are so much sweeter now.  Kyle is being Home schooled this year and loving being at home with Mommy and sister.  He is looking forward to starting Karate which we hope to have him signed up for after scans next week.   Chloe is trying to decide between Tumbling and Horse back riding.  Halie is all about tumbling....  loving the cheerleaders at Aleks football games.  Hopefully someday she can do that.   All in all we are good.  Scans next week --  we will do the bone scan Tuesday, the MIBG injection Wednesday, Thursday we will have a CT of her neck & abdomen and the MIBG scan and Friday we are scheduled for her follow up hearing test.  She has hearing loss that showed up back in July but for now have just wanted wait and watch.  Sometimes it remains stable sometimes it gets worse.   Side effect of the Chemo.  We pray for our sweet girl everyday.  Knowing that their will be side effects for years to come as we see the long term effects of the chemo that God used to save her life.  As always we look to Him alone for wisdom and strength,  sufficient as it is for each day!  Also, please pray for our friend Hans he has relapsed Neuroblastoma and has been fighting for so long.  Pray for wisdom for the doctors as they continue to seek the best treatment plans for Hans.  Lift up Hans as he is undergoing a pretty tough chemo regime and for his sweet family!  May God's hands wrap tightly around this sweet family.  

A friend posted this last month for Cancer Awareness and I wanted to share it in our post!  Praying for A Cure for Childhood Cancer!
They ride tricycles in the hallway, not in the park. They know the names of treatments instead of their classmates. Their central lines have names. Nurses and doctors are their new family. They think hair is overrated. Their laughter can make a heart melt. Their strength will make a grown person cry. If you've ever seen a kid fight cancer, it will change your life forever!

 I will update more as we go through next weeks scans ! God bless you all!
The Pigott Family

August 27, 2011

No Evidence of Disease! Praise the Lord!

  Wow, This is a weekend of Praising God and thanking Him for the wonderful news!  Halie has No Evidence of Disease!!!!  Thank You, Jesus!  We have learned so much this past month.  It has been a long , hard month full of crying out to God, weeping, praying, learning to trust Him even in the midst of the storm.  Once again, His mercy is overwhelming and all I can do is say Thank You, Lord! 

   I ask that while you praise God and Thank Him for Halie's clean scans ( it was a bruise to the bone as the bone scan is dramatically lighter and the MIBG is normal) you would pray for all the families fighting Cancer and coping with relapse, today.  Our friend Dillon is fighting Cancer dealing with the harsh side effects of radiation and Our buddies Hans and Aiden are in the fight against relapse.  Pray for strength for their families, wisdom for their doctors and healing for their bodies.  That God's mighty hand would comfort and hold each one of them.   Thank you for your faithful prayers!  We serve an Awesome God!  Thank You, Jesus! 

The Neuroblastoma Bake sale is coming up in September for those of you who would like to help,  we need bakers!  If anyone is interested email me at   We usually raise about $1500 to nearly $3000 per bake sale!  100% of the sales go to the Children’s Neuroblastoma Cancer Foundation ( to fund research, awareness, and education.  And at the end of the day, any remaining unsold items will be dropped off to various locations within the hospital for patients and their families (i.e. Oncology floor, Pediatric ICU, etc).

God calls us to help those who cannot help themselves, Help us help these kids (our kids) who are fighting for their lives!  

Thank you all for loving our daughter, lifting her and our family up in prayers, we love you!

August 25, 2011


Please keep Halie in your prayers today as we have our last day of re-scans. The MIBG scan is at 1:00 and is the big one that will reveal if there is any Neuroblastoma in her sweet little body. Pray for wisdom for the doctors as they read the results later today that the scans would be clear and leave no room for doubt. Please pray that the bone scan would be clear with the spot that lit up last month gone and that the MIBG would reveal No Evidence of Disease. And as always pray that we would continue to trust him regardless of the outcome today. That we would rest in Him and in his goodness, kindness and above all His love for our precious daughter. Thank you,
I will post after we get the results...

This devotion was perfect for my heart and I hope it encourages yours.....

Streams In the Desert
Put Forth

"He putteth forth his own sheep" (John10:4).

Oh, this is bitter work for Him and us--bitter for us to go, but equally bitter for Him to cause us pain; yet it must be done. It would not be conducive to our true welfare to stay always in one happy and comfortable lot. He therefore puts us forth. The fold is deserted, that the sheep may wander over the bracing mountain slope. The laborers must be thrust out into the harvest, else the golden grain would spoil.

Take heart! it could not be better to stay when He determines otherwise; and if the loving hand of our Lord puts us forth, it must be well. On, in His name, to green pastures and still waters and mountain heights! He goeth before thee. Whatever awaits us is encountered first by Him. Faith's eye can always discern His majestic presence in front; and when that cannot be seen, it is dangerous to move forward. Bind this comfort to your heart, that the Savior has tried for Himself all the experiences through which He asks you to pass; and He would not ask you to pass through them unless He was sure that they were not too difficult for your feet, or too trying for your strength.

This is the Blessed Life--not anxious to see far in front, nor careful about the next step, not eager to choose the path, nor weighted with the heavy responsibilities of the future, but quietly following behind the Shepherd, one step at a time.

Dark is the sky! and veiled the unknown morrow Dark is life's way, for night is not yet o'er; The longed-for glimpse I may not meanwhile borrow; But, this I know, HE GOETH ON BEFORE.

Dangers are nigh! and fears my mind are shaking; Heart seems to dread what life may hold in store; But I am His--He knows the way I'm taking, More blessed still--HE GOETH ON BEFORE.

Doubts cast their weird, unwelcome shadows o'er me, Doubts that life's best--life's choicest things are o'er; What but His Word can strengthen, can restore me, And this blest fact; that still HE GOES BEFORE.

HE GOES BEFORE! Be this my consolation! He goes before! On this my heart would dwell! He goes before! This guarantees salvation! HE GOES BEFORE! And therefore all is well. --J. D. Smith
The Oriental shepherd was always ahead of his sheep. He was down in front. Any attack upon them had to take him into account. Now God is down in front. He is in the tomorrows. It is tomorrow that fills men with dread. God is there already. All the tomorrows of our life have to pass Him before they can get to us. --F. B. M.


"God is in every tomorrow,
Therefore I live for today,
Certain of finding at sunrise,
Guidance and strength for the way;
Power for each moment of weakness,
Hope for each moment of pain,
Comfort for every sorrow,
Sunshine and joy after rain."

Father, Help me not to be anxious to see too far in front, nor careful about the next step, not eager to choose the path, nor weighted with the heavy responsibilities of the future, but help me to queitly follow behind you , the Shepherd, one step at a time.  Right now while dangers are nigh! and the fears in my mind are shaking and my heart seems to dread what life may hold in store; help me to remember that We are Yours--You know the way we're taking, When doubts cast their weird, unwelcome shadows o'er me, comfort me that your word only YOU Father can strengthen & restore, And never let me forget that You GO BEFORE US.  AMEN

August 19, 2011

Pictures from Atlantis! Halie's Wish come true!!!!

We had an amazing time in the Bahamas with our precious family!  Wow, this month has flown by.  Kyle turned 7 ( I love this kiddo!  He has the most amazing heart!  I am so thankful to be his mommy) ,  We went to the Bahamas (Thank you make a wish), spent time with family & Jason and I celebrated 13 Years of marriage!  I love this man more than ever and I am so thankful that through the ups and downs of life he is always by my side!   I am blest!  It's been a whirlwind of activity.  I cannot believe Summer is now coming to an end and school is starting up again next week.  The kids are so excited!  Aleks starts 7th grade, Chloe is in 3rd and Kyle is starting 1st.  Jason and I were just talking about how fast the years are flying by.  We are sooo thankful for our amazing kids!  Tuesday as the big kids start school Halie and I will be down at Texas Children's Hospital getting scans.  Yes, the month has flown by and it is time to rescan.  The bone scan is Tuesday August the 23 and the MIBG is Thursday the 25th.  We are hoping to have the results by Friday.  Please pray that the spot on the bone scan is gone and that the MIBG reveals no evidence of disease.  Pray for us to rest in Christ this week as this past month has been an emotional roller coaster.  I read a quote the other day that sums up my month "kicking and screaming all the way, I am still learning the lessons of Job".   How true is that statement.  Cancer is a hard road but God is a good God and although in my weakness I am afraid and weak, I am thankful that He is not.  "Do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."  I love the I's in that promise.  Because He is strong I am free to be weak!  Thank you Jesus!  Pray for our family this week as we cling to the promises of God.  He is our hope...

August 1, 2011

Waiting on the Lord...

Sooo many things go rushing through your mind as tests are being performed on your daughter....the waiting....and waiting.....only to find out we need to wait longer  Not moments or hours but days.  Most of the tests run on Halie are clear.  There is one .... the bone scan that shows what appears to be a lesion on her bone in her leg.  The MIBG (this scan targets Neuroblastoma cells) is just fuzzy in that same area. Her doctor calls this inconclusive...meaning there isn't enough information to determine relapse or no evidence of disease. Therefore, we wait for a month then do another bone scan.      Please pray for us as we walk through this month.  As her doctor says..prepare for the worst news yet hope (but we say PRAY) for the best.
So today....the day we fly off on Halie's "Make a Wish" vacation swimming with the dolphins....we will enjoy the laughter and family time.  Pray for us as we journey to embrace and enjoy the 10,000 little moments of delight and wonder each day.  And as John Piper says...."I will talk to my tears."  Yes, my heart is heavy but the Lord I remind myself of the post early this summer:

  God will sustain us and we are continuing to look to Him for our strength to face whatever challenges the future holds.  For me as a Mom, the future is at times so full of hope and I am so thankful for all that God has taught me on this journey and yet their is always that fear.....  What if it comes back????  I am learning to give it to He on whom we have set our hope.  He alone holds her (all of us in His hands) and I have to press forward.  Not without fear mind you but with a confidence not in myself but in the One who is my Hope.  You see what He has shown me this year is that I am going to fall short, I am going to give in to my fear at times and be overwhelmed by my lot in this life but, in His kindness He will lift me up, He will carry me, strengthen me and lavish His love on me, He will remind me that this is not our home.  You see he remembers that I am but dust and that without His living breath in my life I cannot live the life He has called me to.  So, whatever the future holds for us we will walk in confident trust in Him who holds all things together.  He is our Hope.  --- Now, please remind me of that in July when we scan....;) 

Thank You Lord for using the words of this post to remind me!  Please continue to pray!

July 5, 2011

Last Round of Isotretinoin (Accutane.....)

Praise God,  Halie qualified for her last round of Isotretinoin (Accutane).  She will have her last fourteen days of treatment at home and then we begin the scans for her end of treatment evaluation starting on July 18th.   As soon as I have her schedule I will post it!  We appreciate your prayers. She is fully enjoying her summer being at home with her family!  Swimming is her activity of choice (although we have begun enjoying it more in the evening) the sun is too hard on her while on treatment. We had hoped to get back into the swing of things and get a little more "normal"  but it is not to be...  not yet.  I met with Dr. Louis last week and we still have to be so careful.  Her little body has been through so much and needs time. As many of you know Halie's last treatment of Immunotherapy manipulated her Immune system.  We got the blood work results back from clinic and she did not retain many immunizations after her stem cell transplant this along with a compromised immune system puts her at risk for serious complications.  As Dr. Louis said it is not worth this risk.   The team is working on getting a schedule but it could take time.  Many things have to be considered.   Sometimes it seems surreal that we are at the end of over a year of treatment.  I look at her and she looks so great!  A far cry from even a few months ago.  I am so overwhelmed by the grace of God in our lives. Thank you for your continued prayers.

June 16, 2011

Summer is here!!!

Wow, I cannot believe it has been over 2 months since I last posted!  Well, in our case No news IS good news!  We have had a whirlwind of activities going on around the Pigott Household. God has been so gracious to us to give us some sweet memories over the last few months.  The big kiddos have finished school.  We officially have a 7th grader, 3rd grader, 1st grader and YES MISS Halie turned 4!  So many milestones.  I can hardly believe it!  I will briefly recap all the corners we have turned.  In April,  Halie Nicole after a year of Chemotherapy, Surgery, Radiation, A Stem Cell Transplant, Immunotherapy and Maintenance treatment (which we are currently in the final stages of treatment "Please Jesus")  Turned four.  For those of you have known us best this journey through the dark road of Cancer began last year on her birthday.   In hindsight that is when she started to get sick.  She did not feel well when she turned three but, What a joyful celebration turning 4 was.  On, April 27, we enjoyed, celebrated & Praised God for the life of our precious daughter.  What a joyous day!  Then in May we were so blest to get the opportunity to go to Squirrel Creek Ranch with Texas Children's Hospital.  What an Amazing experience.  Thank You, to the Faust family for opening your hearts and home to our children.  It was a time of healing for our family.  As many of you know we had been trying to go on this trip for a couple of weeks but we got sick with fevers and tummy aches so we had to cancel our first trip and yet our sweet Child Life Counselor arranged for us to get invited again and our Awesome God planned it to work out the weekend that marked the 1 year Anniversary of the day Halie was diagnosed with stage 4 MYCN Amplified High Risk Neuroblastoma.  It was not a day of reflection on the events that turned our lives forever upside down like I thought it would be but a day of rejoicing and joyful tears as we shared the faithfulness of our God for all that He has brought us through this year.  Last year on May 21st Halie was lying in a hospital bed, unable to walk, getting her first central line, experiencing her first surgery and chemotherapy, with such an uncertain future......Yet on that same date a year later with curly hair growing in place of her smooth bald head, a scar instead of a central line dangling from her chest and smiling and laughing as she plays with families who have walked and are still walking this road with us.  She spent the weekend running around Squirrel Creek Ranch, swimming, fishing, riding a horse, laughing, playing with her family, friends, nurses and our sweet Breanna, looking healthier than we have seen her in so long that I was overwhelmed by how blest we are... What a joyful experience that was.  Words cannot express the gratitude I have to God that a year later we are all together the 6 of us celebrating the end (please Jesus) of treatment -- A day I have to say we did not know if we would see....  Praise be to God,  for that wonderful experience.  He alone knows the healing that time alone began in our family.  What a joy!  So, now we are starting our Summer.  We are healing as a family, trusting God to help us reconnect after a year of seperation.  Learning to trust Him day by day as we start a new faze of life with Cancer, with being back at home with our family.  In so many ways it is scarier to look at being done with treatment.  CANCER, There is soon to be nothing keeping it at bay, fighting the cells that are so relentless and determined to return.   In July Halie will complete her last round of Acutane and we will have our End of Treatment scans.  We will as always do a Disease evaluation and determine if she is indeed in Remission, we will (please Jesus) start down the road of scanning for five years to check for evidence of disease.  Even after all our Precious, brave warrior has been through the relapse rate is high for Stage 4 High Risk Neuroblastoma and for 2 years we will scan every 3 months and then for three years scan every 6 months.  We will also, start to check for signs of damage to her heart, hearing, kidneys, liver function and a multitude of other things to see the damage done after a year of harsh treatments to such a young child.  God will sustain us and we are continuing to look to Him for our strength to face whatever challenges the future holds.  For me as a Mom, the future is at times so full of hope and I am so thankful for all that God has taught me on this journey and yet their is always that fear.....  What if it comes back????  I am learning to give it to He on whom we have set our hope.  He alone holds her (all of us in His hands) and I have to press forward.  Not without fear mind you but with a confidence not in myself but in the One who is my Hope.  You see what He has shown me this year is that I am going to fall short, I am going to give in to my fear at times and be overwhelmed by my lot in this life but, in His kindness He will lift me up, He will carry me, strengthen me and lavish His love on me, He will remind me that this is not our home.  You see he remembers that I am but dust and that without His living breath in my life I cannot live the life He has called me to.  So, whatever the future hold for us we will walk in confident trust in Him who holds all things together.  He is our Hope.  --- Now, please remind me of that in July when we scan....;) Enjoy the new pictures

March 31, 2011

My help comes from the Lord....

  God has indeed showed himself faithful once again to our family and I feel in awe of His kindness and grace.  The past few weeks have been among some of the most trying of our life.  Halie's last round of Immunotherapy was difficult beyond words as she began to have Neurological side effects.  She slept for over 23 hours straight at one point the Dr.'s were concerned she'd had a stroke.  No idea at the time if the effects were permanent.  She was unsteady in her walking and was involuntarily jerking (seizure like activity) and having problems with her eyes before during and after the treatment was being administered.  I won't go into all of the details suffice it to say Jason and I had alot of praying to do to know if we would continue the trial or not.  Neurological side effects are all in the rare but serious category and after meeting with Neurology and our Oncology team it became apparent to us that the risk were out weighing the benefits.  But we had time to make a decision.  During the week that followed we had Halie's Disease Evaluation scans.  Three days of Bone Marrow Aspirations, CT scans of the neck, chest and abdomen and MIBG to show if there is any "Evidence of Disease."  Friday took along time to get here as we waited for the results.  Dr. Louis called late in the afternoon with the amazing news NO EVIDENCE OF DISEASE!!!!!  Praise God!  It struck me later that day that we are 6 months with clean scans.  What a blessing and testimony of God's power,  love and mercy for our family.  He is faithful, regardless of the results, we have learned to trust Him in the hard times as well as the times of rejoicing.  He is good.  The conversation quickly turned back to the Trial.  Do we continue?  Do we stop.  The answer seemed so clear honestly that we were done but there are doubts and fears.  For Dads and Moms there is no easy answer.  If we stop, has she received the benefit from the antibody or are we putting her at risk for relapse?   If we continue, do we risk putting her in a coma or causing swelling of the brain.  I confess I have wrestled with this question but God pulls me back with Jason's stalwart character. Again God has proved Himself faithful.  As my Mother-in-Law keeps reminding me God is near to the brokenhearted.  He came near.  What was my trust in?  God or the Immunotherapy?  He lead us down this path and if we are trusting Him then we are blessed to see when He says stop.  Her life is in His scarred hands and there is no safer place for her to be.  His love for this child surpasses mine as hard as that is sometimes for me to fathom.  He is our Father.  Yesterday as I prayed for my family the Lord showed me how He has grown my trust in Him and that as my Father He would withhold no good thing from His children when they are truly seeking Him.  And, He gave me rest in Him (Well... as much as my human mind can rest.)  Sometimes it is a battle to give it all to Him...I try to take it back then give it to Him again....   I am thankful even though I am sinful and flawed,  He is faithful and true.  He provided the answer.  Halie's Doctor called late in the afternoon and after much deliberation and seeking answers...we have an answer.  As  I write this blog entry I am waiting to take my sweet girl to TCH to have Halie's central line taken out.  We are done with Immunotherapy.  We will continue to place our trust in Him.  The Lord gave us an answer that only He could have in a way that we saw Him and we have a peace with trusting Him.  This is His answer.  We will continue with Acutane for three more cycles but we are done with Hospital treatments hopefully forever.  We will scan again at the end of Maintenance and that will probably be our hardest set of scans as we will be the longest time without "active treatment" so please continue to pray for Halie.  For now we rejoice that God has heard our cries.  He is more precious to our hearts than ever before and I beg of you if you do not know Him cry out to Him for a saving relationship.  He is our refuge, our strength our protector, our Father, our Savior, our God.  (Psalm 31: 14-16)  "But, I trust in you, O Lord,  I say, "YOU are my God",   My times are in your hand.  Thank You Jesus!!!!!!!

March 24, 2011

Scans, scans and more scans

Yes...I have been thoroughly scanned from the top of my head to the tip of my toes....who knows I may be glowing!!!!!  =)

I am in my Disease Evaluation Week....the doctors are looking for any signs of relapse in my body. 
Tuesday I had a Bone Marrow Aspiration...Praise the Lord I was asleep for that!!!!
Today...MIBG...this test scanned my neck, chest and abdomen.

I know it doesn't sound like alot but considering my week last week....I'm wiped out!!!  Over this past weekend I had some neurological issues from the Immunotherapy that were pretty darn scary.  Praise the Lord for my mommy that kept a keen eye on me to inform the doctors about the "signs." (mommy is not writing this so I can say "keen eye" and she just might shoot me!)  The doctor whisked me away for an MRI of my brain and they discovered a swollen Optic Nerve which should heal on its own.  I didn't run any fever over Saturday night so I finally got to go home on Sunday...whew....I LOVE being HOME!!!!

Please pray for my mommy and daddy....they have several decisions to make regarding my treatment.  Pray for wisdom ...Gods' wisdom and peace to guard their hearts regarding these decisions.  Pray God increases their faith and trust in Him as they entreat Him for my benefit.  He is faithful!!!  He gives me the courage to "simply" trust them as they follow God.   

March 14, 2011

Round Four.....

  Well, here we go again, we checked in last night to the ninth floor of Texas Children's Hospital for round 4 of Immunotherapy after a much needed break.  At 10:00 a.m. we will start the Chimeric Anti-body at 5 ml over 20 hours.  We are expecting high fevers, low blood pressure and to have to keep a close eye on Halie's I's and O's (input & output)   Praise -- The Doctors have agreed not to try to run the anti-body at full dose 10ml over 10 hours so by God's grace this visit will run smoother than past visits.   Please pray that God will continue to protect Halie's Kidney and Liver function.  With our much needed break came better labs, the trace blood we have had present in her urine since round one has worked itself out and our levels are within normal range.  Thank You Jesus!
  The past few weeks that we were at home were a mixture of the Joy of just being together and grief as we experinced sickness, fear and loss.  We have lost too many friends in their battle with Cancer recently and seen many that we have come to love and pray for return with relapse after leaving this floor months ago so full of hope that remission was achieved.  I confess I have struggled, grappled with how to console a grieving mother or encourage a weary heart when mine felt so sorrowful and overwhelmed.  I am thankful that God  taught me His goodness before this present trial and so thankful that I have seen with my own eyes His love, provision and grace because this road is hard and it is easy to lose your way in the fog of fear and uncertainty.  Please pray for these precious families some know the Lord others do not.  My mind cannot comprehend this journey without the help of our Savior and I am desperate that they come to know Christ as He alone is their only hope.  We have also in our own family seen loss as Jason's beloved Aunt Frances, his Dad's sister, went to be with the Lord last week.  Jason loved her dearly and she will be missed but we rejoice that she knew Christ and loved Him deeply and is in His presence rejoicing with a body that will never again know loss or sickness.  Jason was unable to attend the funeral because Friday Halie had to have a last minute surgery to replace her central line. Her line came out of her right aorta and it would not have been safe to start the antibody until it was replaced. Jason's Grandfather has also been in the hospital undergoing major surgery and Praise God is now home recovering.  Please keep his family in your prayers as they make arrangements for his continued care at home. 
  Our time at home was a mixture of sorrow and joy but I am encouraged that just as we are tending our own gardens and getting ready for Spring that God will not leave us here.  He is preparing our hearts for Spring, a revival of sorts, and pulling out the weeds that we have left unattended in our own hearts during this time of winter.  For though "weeping may tarry for the night,  joy comes in the morning"
  Thank you for the precious prayers for our family.  I will update more as the day goes on......

March 11, 2011

A big howdy to ya'll!!!

I have been having soooo much fun at the house with my family I almost forgot to update everyone!  Here is what is a fun day ..please pray for me!!!  I can't eat anything until the doctors change out my central line.  Yes, you heard me central line has to be replaced today.  Just found out yesterday during my clinic visit.  God is so good to get things worked out for this to be done.  I am getting worked into the schedule...that is the difficult thing...waiting...but it will be done today!!  I will be admitted again on Sunday to begin the ch14.18 on Monday.  Daddy and mommy are with me while we wait (I'm hungry....grr...!!) for my turn for surgery.  I like that!!!!  I mean the mommy daddy thing :)    Anyway...Please pray this goes smoothly and I get to go home today!  Please pray for strength for mommy and daddy whole family!  OK  gotta jet for now...I hope they call us back soon!

March 5, 2011

I'm home and feeling great.   I get three weeks off to recover from the last treatment.  I go back to the hospital again on 3/13, so I have another full week at home.  On the 13th I'll be there for a week to get another Ch14.18 treatment, but for now I'm having fun.

Please pray for the follwing needs:

Jason's grandfather had heart surgery and is in recovery please pray that God would heal his body and draw him closer to Christ during this difficult trial.

February 22, 2011

A time of quiet rest & sweet refreshment....

Isaiah  32:2  "Each will be like a hiding place from the wind,  a shelter from the storm, like streams of water in a dry place, like the shade of a great rock in a weary land" 

  Johnathan Edwards says There are quiet rest and sweet refreshment in Christ for God's people who are weary.  The Lord has given us a sweet time of rest and refreshment.  Today at clinic we got the good news that we get 2 weeks off from clinic and Hospital stays.  In over 9 months I don't recall having such a long break from the hospital.  It comes at such perfect timing.  Immunotherapy has proven to be very hard emotionally and physically, We are weary, Yet our God remains faithful and has not tested us beyond what we can handle.  His grace has been sufficient.  I am looking forward to time at home with the kiddos to just be "normal"  Please pray for health in our home as a fever quickly cuts our little reprieve short and we would be back at TCH. 
  That being said.  We are home.  Halie is loving it and the kids are having a blast with our new Guinea Pig "Rosie" .  The kids are doing great and look forward to time with Daddy, Mommy and Halie. 
   I wanted to say THANK YOU to our wonderful church family for hosting a Lunch for a Cure for Neuroblastoma Research in honor of Halie.  We made over $2,500!  What a blessing.  It's awesome to see God's people rising up to help those who cannot help themselves.  Thank you for your prayers, time and donations.  I am excited to mail the check tommorow.  We are very blest to have such suportive family and friends. 
  Good night & God Bless

February 15, 2011

His mercies are new every morning.....

Today has been a better day for me, Thank You Jesus!  I was able to start the ch.14.18 around 6 p.m. and the IL-2 at 8:00 last night.  I pretty much slept through the night.  :)  I finally got my Lasik and my I's and O's are looking pretty good.  Mommy did the Happy Dance! (actually the peepee dance)  Today has been pretty fun.  I woke up wanting to play with Daddy, He is the best!  Then Mommy and I hung out all morning playing in my room.  I took at good nap from all the Benadryl and Morphine but I woke up around 4 with a fever :(  Mommy gave me a cool bath and some Tylenol and I am staying pretty steady at 100.  Overall a good day.  Daddy and Mommy are happy with my blood pressures.  Tonight I have tons of energy so I am gonna have to run.  We have pet shops to play with after all.  Please pray that I have a good night, no low blood pressures, that my tempy stays steady so I can stay on the 9th floor.   And please pray for my I's and O's to stay good so Everyone will quit worrying about me peepeeing.  Have a great night XOXO  Halie

February 14, 2011

He will supply the strength we need -- just in time.

  First Peter 4:12 says ....."I beg you not to be unduly alarmed at the fiery ordeals which come to test your faith."  Day one of IL-2 & the Ch. 14.18 (Chimeric Antibody) has proven to be another fiery ordeal  which has come test our faith.  Yet, I am thankful that he has once again proven to supply the strength we need....just in time. 
  Today has been a rough day for Halie but God has supplied strength in abundance for His precious child.  The IL-2 started promptly at 9 a.m.  It was a good morning.  She played, ate donuts, got to go to the was fun.  Big love brought a fun basket full of Valentine's Day treats.   It seemed like everywhere we turned someone was giving fun bags and treats.  Then at 11:00 we started the CH.14.18 it usually takes about three hours for the full effects of the anibody to kick in.  Around 1:45 we took blood pressures and they were alarmingly low.  Halie was sleeping but we were having trouble rousing her so Dr.'s were called in and the protocol was stopped.  So the afternoon has been spent trying work out a plan.  Her I's and O's are positive 800 but the decision to give her Lasik has not been made due to blood pressure issues.  We are trusting bodly in God's promises knowing that all things are in His mighty hands and will be accomplished for her good and ours.


February 13, 2011

Round Three......

  Round two went without a hitch, Thank You Jesus!!!  We actually got to go home Friday :)   Yeah!!!  We are so thankful for the good days.  Halie got to break out for a few minutes Friday and visit the Bake sale.  It was great!  Yummy treats.  Thank you so much to our sweet family and friends who baked for us.  You are amazing.  The bake sale made over $2,000 for Neuroblastoma Research.  Fantastic.  I feel so blest to have other Neuroblastoma Momma's around us.  Many have walked this road for many years and are always so willing to give a hug or offer encouragment.  I am thankful for you. 

  Today we checked in for round 3.  This will be a combination of the last two treatments, CH14.18 and IL2.  CH14.18 was not fun the first time around, hopefully it will go better the second time around.  We covet your prayers.

The Pigott's

February 8, 2011

This I know, that God is for me....

Psalm 56 has been such a comfort for me the past few days. Today as I was reading this precious psalm verse 9 captivated my attention.  "This I know, that God is for me."  This is a perfect picture of trust and of God's faithfulness.  He is for those who trust in Him.  This truth fills me with joy today.  Do I know this truth?  Really?  Deeply in my heart?  When I look at Halie and watch her unwaivering trust in her parents, she knows we will do what is best for her.  And we who are sinful and flawed how much more precious is the truth that God is for us...Father help us remember that wonderful truth when this path of immunotherapy leads us down dark paths that give us only enough light to take the next step.

Well, on that note. Day one went pretty smooth.  God has given us a stream in our desert to just breath in the midst of uncertainty and rest in the knowledge that He is for us and that truth will carry us in the good days as well as the ones that leave us fearful and overwhelmed.  So for today we offer praises that Halie was up playing in the playroom, painting, riding the halls, eating, drinking and Thank you Lord  pee peeing  (yes, pee pee is a reason for great triump)  One of our biggest worries is kidney damage or capillary leak. When her I's and O's (input and Output are not = it becomes a huge concern.)  This fact alone can be life threatning.  Yesterday was one of those days it was a concern.  We were positive +680.  Our I's and O's were not equal.  Thankfully they were able to give her Lasik to help her potty.  By this morning after a long night of getting up every 2 hours to encourage her to potty we were even for today. We are thankful for those of you who pray so specifically for Halie it's amazing the power of prayer.  If tommorow takes a different turn and we are tempted to be afraid pray that we will Remember that He is still for us.  Please continue to pray for Halie.  As thankful as we are for the uneventfulness of this visit so far :)  We are painfully aware how quickly things can start to go wrong.  But for today we just say Thank you Jesus for joy and playful days in the midst of this storm. 

February 7, 2011

Here we go....

Day 1 IL-2
Prayer request
  • fever and chills (including shaking chills)
  • flu like symptoms
  • Diarrhea
  • loss of appettite
  • tiredness
  • drop in blood pressure
  • skin rash
  • itching
  • fluid retention in the tissues
  • increased levels of creatinine in the blood which could mean kidney damamge
  • decrease in urine which could mean kidneys are not functioning well
  • elevation in the blood of certain enzymes or bilirubin which could indicate liver irritation or damage.
  • increase in the blood of a type of white cell called eosinophil that is sometimes associated with allergic reactions.
  • increase in the number of white cells in the blood.
  • fewer red blood cells and platelets in the blood.
    • a low number of red blood cells can make you feel tired and weak
    • low platelets casue you to bruise and bleed easily.
Less Likely ( I will list just a few) 
  • Nausea and vomiting
  • Capillary leak in which fluid and proteins leak out of tiny blood vessels and flow into surrounding tissues, resulting in dangerously low blood pressure which may lead to multiple organ failure such as kidney, heart or liver failure and shock.
  • Heart problems
  • High blood pressure
  • High levels of uric acid in the blood which could damamge the kidneys
  • Nerve damage
  • mouth sores
  • severe rash that could cause loss of skin
  • hair loss
  • poor blood supply
  • Infections -- bacteria, virus, and fungus
too many to list

Rare but serious
  • Severe allergic reaction
  • Heart attack or severe pain in the chest that could be fatal
  • inflammation of the heart muscle which could lead to heart failure
  • bleeding which can occur in the head, stools, the nose, urine and other parts of the body
  • covulsions or seizures
  • coma
I can't list them all the Lord knows them just please lift her up that God would protect her life, her body functions and heart.  I list them not to shock but because they have seen all reactions especially in the likely and less likely.  Please Pray.....

I will try my best to update as the day goes on.  For now we have pet shops to play with......

February 6, 2011

When I am afraid I will trust in you.....

Well, here we are again at Texas Children's Hospital getting ready for course 2 of Immunotherapy.  We had an Awesome time at home with the kids this week and felt God's blessing by allowing the kids to have "snow days"  and  hang out at home with our sweet family.  When you have a child who has battled cancer the normal become so precious.  It was a blast.  I have to say I was a little worried this morning when we talked to Halie about needing to pack some things to go back to the hospital. after last time I figured we would have many tears to work through but by the grace of God she was happy to go.  We stopped at the store on the way and she told us to hurry up..  She needed to get to her hospital.  We checked into room 904 and she was so excited to see who our nurse was.  All smiles when nurse Amy walked in...  Kids know when they are loved.   It was fun.  We have so far played pet shop, colored, raced the hospital halls, took an imaginary car ride around the halls (ran out of gas :)  Mommy had to push!  she thought that was funny)  The best part was we broke out!  We did.  We went down to McDonalds :)  It was so fun.  We are totally allowed she is not even hooked up to an IV pole on Sunday we just have to be here for 2 am labs and IL -2 starts promptly at 9 am.  but she thought we were breaking the rules.  it was fantastic.  So worn out from all of our adventures she is sleeping.  Mommy and Daddy are trying to prepare for tomorrow.   If that is really possible.   I am often drawn to the Psalms it seems during times when my heart is to tender for much else (my weakest days)  I can find a Kindred Soul there...  it is like sitting with a trusted friend who knows your faults but loves you anyways.  That is where I find myself tonight.  I am afraid.  "But I have set the Lord always before me.   Because He is at my right hand I will not be shaken".   Jerry Bridges says that "Trust is not a passive state of mind.  It is vigorous act of the soul by which we choose to lay hold of the promises of God and cling to them despite the adversity that at times seeks to overwhelm us." So tonight we lay hold of the promises of God and obey not knowing what tomorrow may hold but trusting in the God who does.  Please join our family in praying for Halie tonight.  Specific prayer request: 

  • That she can tolerate the IL-2  it will run for 96 hours straight
  • That she will not get fluid build up in her lungs!
  • That she will not have an allergic reaction ( forms are life threatening)
  • That her body will continue to tolerate the Immunotherapy and she will be able to continue the trial
  • That the drugs would do what they are supposed to do (That God would use them to teach her body to fight Neuroblastoma) and that any MRD would be annihilated.)
  • For our kids at home who miss their Daddy, Mommy & little sister
  • For Noni and Nana as they take care of our precious ones at home!

Oh yes, by the way for those of you who have contacted us about helping with the Bake sale Friday February the 11th at The 3rd floor foot bridge TCH 10-2 Tracey Willis will be picking up any bake sale items that you all so generously donated to help raise money for Neuroblastoma Research.  She will pick them up at the Church Wednesday night and take them to my Mom who will get them to the correct person in time for the sale.  Thanks so much for being the hands and feet of Christ for us with this one.  You all know our passion especially after going through one course of Immunotherapy!  And we are in - patient unable to bake or serve and as always God provides through His people.  I love you all (You know who you are)  Thank You!  Thank You!

January 30, 2011

January 24, 2011

The storm is raging all around...Jesus still....

Jesus ...please calm the storm...please grant us peace.  Protect Halie and comfort her.
Halie is headed into surgery at 7:00pm today to remove her central line. Please pray!!!

Help me praise You in the storm!

I couldn't sleep last night and as I laid in the hospital bed with Halie my mind was racing.  I have been told many times to journal our experiences but I have started and stopped so many times.  The emotions are too raw and I find myself waiting to work through how I am feeling before I post. Last night that changed.  I read a post from a dear sister in Christ who is walking this journey with us and I was struck at why I am drawn to her blog.  It's real, honest....raw.  I have been so encouraged by her faith because of her realness.  The fears and tears I can understand.... I can relate.  I have put my heart out there a few times and it was freeing.  I don't know why I hold back and hide behind others... (Thanks, my friend, for being my voice, you know who you are)  I am going to give it a go.  Letting go of my pride and fears and be the voice for this this precious warrior of God.  If she can do it so can I..... So here goes.....  Today I have spent alot of time thinking finally allowing myself to try to work through all that has happened this past week.  We checked in last Sunday knowing this would be hard but not really understanding.  The side effects and possible side effects lurking in our minds seem almost surreal.  Your afraid but she's done so well there is a part of you that believes she will sail through blowing the doctors away by how amazing she did.  But then reality sets in and side effects on paper become reality and the really scary ones are thrust upon you and all you can do is cry out to God for help.  Monday a few hours after the ch14.18 started she was doing so well our fears were kind of stuffed away when she first started letting us know she was in pain.  They tried to control the pain with morphine but it was hard to get under control ...  when finally it seems they found the magic dose it was decided she needed a foley catheter and while the nurses were trying to place it she stopped breathing.  All I can say is my world started spinning and for a few seconds I honestly thought we lost her.  As Jason and I tried to stay out of the way to let the response team work on her our world stopped...  We held each other and silently prayed as the doctors quickly told us she had a strong pulse and would be fine. They needed to act quick so the ICU team stepped in and tried to find out what happened... was it the morphine? or the anti-body?   Everything was stopped and for a moment we were discussing whether it could be restarted.  They gave her a drug to reverse the effects of a morphine overdose to try to see if that was what happened and quickly she screamed out in pain.  The doctor looked at us and said he was sorry but to counteract the overdose he had to take away all the pain meds.  It would slowly start working again but for several minutes she felt the complete pain of the antibody and it was heartbreaking to see your child in such intense pain. I have to admit hearing her cry was mixed emotions as a mom you hate to hear your child in pain but to hear her, knowing she was still with us I can't explain the emotion.  I could not stop thanking God.  Immediately I started questioning restarting the antibody they moved us to the ICU to better monitor her and we requested to meet with Halie's fellow and main doctor, Dr. Louis before we could even consider restarting.  You have to understand there is not alot of time to make a decision.  It's a clinical trial and the protocol is strict so, all things considered, her reaction was not from the antibody it was from the morphine, so we continue.....  the next few days were spent in the ICU with low blood pressure and fevers up to 105...  We are now back on the 9th floor.  Our home away from home and waiting to find out what the next step is. After the antibody finished she spiked a low grade fever and bacteria grew from the culture on her central line.  The bacteria has tested positive for 2 days and we are waiting to see the results from today.  If it is still positive we will have to look at getting her line removed and a new one placed.  Once we have more information I will let you all know.  For now please pray that the bacteria is gone and that we can treat it with IV antibiotics and that will be all that is needed.  Lord please help....Halie is in remission and yet we are still fighting for her life and we must persevere.  We are not strong.  We just trust a God who is and daily I fight the inner battle that wages in my soul.... why?

January 21, 2011

Extended stay

God makes ALL things beautiful in HIS time!  Today isn't my day to go home and that is fine with me!  The doctors had to run a few tests on me today, you see, I have infection in my body somewhere. They need to find the source but they have begun antibiotics and I received blood today.  The other test they ran today was on my heart.

Please pray
  • the infection is NOT in my central line 
  • the ECO  and EKG show what they need to see (I hope NOTHING!)
  • for rest for mommy and daddy
  • my brothers and sister understand the delay in our return home (I wanna see them soooo bad!)
  • over all....more of JESUS for everyone!
Trust in the Lord....Lord give me the faith to trust You!

Good night :)

January 20, 2011

Big sigh!!!!!

whew!!!!It looks like this will be my last night for this round!!  Praise the Lord for His protection!!  Yes I still have fever but it is part of the side effects.  Please keep praying...pray my fever doesn't get too high and the pain stays away.  Pray for mommy and daddy...they are tired and could use a good nights sleep.  ( the hospital?!?!?!)  Anyway...the doctors say in spite of the side effects I am having I am still doing really well on this treatment.  That encouraged my mommy's heart!  Please pray things continue to go well and I get released tomorrow.  I miss my family....speaking of my family...please pray for my sister and brothers.  I know they are worried about me.  Please pray God will kindly remind them He is in control.I am safe in His power and control.

OK   back to resting....xxoo

January 19, 2011

His mercies are new every morning.....

The fever went really high (105) last night but it was a side effect.  Once I got off the antibody for the day my fever went away!!  Now we are gearing up for today's treatment.  I will be getting out of ICU and going back to my regular room today...that is good because the chairs here aren't designed for daddy and mommy to sleep.  They are tired!!  I will be getting the antibody at the lower dose for 20 hours again.  The doctors expect my fever to return (just like last night) yet this time we all know it is just a side effect.  Still scary but OK. 

Please continue to pray for the same things...heart rate lowered, blood pressure to rise, pain managed, and fluid eliminated. be ready for the high fever again.  Please pray God would continue to reassure mommy and daddy about this tough journey.  It is for my good as hard as it day daddy is going to give me away at my wedding to my knight in shining armor whom the Lord is preparing now for me!!!!!  Love to you all!! 

January 18, 2011

PRAY.... more side effects ~ Jesus help me!

Alrightie.... in addition to the heart rate, fluid retention, blood pressure, I need prayer for the fever I have.  It has been as high as 104.  I'm still in intensive care which is good because they monitor me closely but it's not so good for mommy and daddy...there isn't really anywhere to rest for them.  I am SOOOO glad they are both here ... I love them!!  Thank you for praying!!! 

Day 2 of treatment

Today is beginning better than yesterday.  The doctors have cut the amount of medecine I get each hour in half  and instead of it running for just 10 hours the time has doubled to make sure over a 24 hour period I still get the same amount,  this is going much better.  It isn't as painful and my tummy doesn't hurt like it did.  So far the pain is managed but please pray it stays this way.  Pray my blood pressure goes up, my heart rate goes down and my breathing stays good.  One more thing...please pray my kidneys stay healthy and my body stops retaining fluids.  Thank you for your love and prayers!!

January 17, 2011


This is from Noni's facebook:

Hi everyone - today was really hard for Halie & her mom & dad Please continue to keep them in your prayers. So far this is the hardest treatment for her. She is in a lot of pain & that is hard for us all to deal with. We know God is control, but as humans it is hard to see one we love hurt. Please pray without ceasing for her to continue being strong & for God to help her manage the pain.

A message from Nana as well:

Halie has had a very difficult day. Her pain level has been very high. There has been some problems getting her medication to help ease the pain at the correct level. She is in ICU tonight so they can keep a closer eye on her. Jason and Jenn have had a lot of heartbreak witnessing all of this. Please pray for all of them.
As you can see today wasn't the best for me.  I hurt ALL over and the pain medication needs much tweeking.  There were some REALLY scary moments for mommy and daddy....pray for us ...pray for protection from side effects, pray for peace ...God's peace to embrace us all.  Pray mommy and daddy will get some rest tonight. us!

January 16, 2011

I will help thee, saith the Lord.

Isaiah 41:14

I will help thee, saith the Lord.

This morning let us hear the Lord Jesus speak to each one of us: "I will help thee." "It is but a small thing for Me, thy God, to help thee. Consider what I have done already. What! not help thee? Why, I bought thee with My blood. What! not help thee? I have died for thee; and if I have done the greater, will I not do the less? Help thee! It is the least thing I will ever do for thee; I have done more, and will do more." "Before the world began I chose thee. I made the covenant for thee. I laid aside My glory and became a man for thee; I gave up My life for thee; and if I did all this, I will surely help thee now. In helping thee, I am giving thee what I have bought for thee already. If thou hadst need of a thousand times as much help, I would give it thee; thou requirest little compared with what I am ready to give. 'Tis much for thee to need, but it is nothing for me to bestow. 'Help thee?' Fear not! If there were an ant at the door of thy granary asking for help, it would not ruin thee to give him a handful of thy wheat; and thou art nothing but a tiny insect at the door of My all-sufficiency. 'I will help thee.'" O my soul, is not this enough? Dost thou need more strength than the omnipotence of the United Trinity? Dost thou want more wisdom than exists in the Father, more love than displays itself in the Son, or more power than is manifest in the influences of the Spirit? Bring hither thine empty pitcher! Surely this well will fill it. Haste, gather up thy wants, and bring them here-thine emptiness, thy woes, thy needs. Behold, this river of God is full for thy supply; what canst thou desire beside? Go forth, my soul, in this thy might. The Eternal God is thine helper!

"Fear not, I am with thee, oh, be not dismay'd!

I, I am thy God, and will still give thee aid."

God used Spurgeon to ministered to my Mommys heart this morning.  She is a little anxious going into Immunotherapy & she really wanted me to share it!  God is so faithful to gently remind her that He is our help and as we begin this new phase of treatment He will help us as he always has.  He will give us the strength to walk this journey, He will give the doctors wisdom to take care of me and He will supply the peace that surpasses all understanding. HE will take care of me....He always has.  It was His hand that has brought me this far and I am safe in his arms.   I get admitted for my first ch.14.18 treatment tonight.  This round begins at 9 in the morning and will run over 10 hours Mon - Thursday.  This drug is a chimeric monoclonal antibody that is designed to attach to specific targets on cancer cells.  In neuroblastoma one such target is GD-2.  Ch 14.18 was designed to attach to neuroblastoma cells and other cells that have GD-2 present.  when ch 14.18 attaches to the neuroblastoma cells, the bodies immune system is stimulated to attack and kill the neuroblastoma cells.  This is called immunotherapy.  Ch14.18 represents a new kind of cancer therapy because it targets the cancer cells without destroying the nearby healthy cells unlike chemotherapy and radiation.  I will also be given GM-CSF which is supposed to increase the anti-cancer effect of monoclonal antibodies like ch.14.18.  I will also be given Interleukin - 2 but I won't get it until feb 6th.  I will be treated with 6 courses of therapy and each course will last between 24 and 32 days.  I will be treated with ch.14.18, GM-CSF, and isotretinoin ( which I will be given at home by Mommy and Daddy)  in courses 1,3 & 5.  In course 2 and 4 I will be treated with ch.14.18 and Interleukin - 2 "IL-2"  In course 6 I will be given Isotretinoin.  Whoo --- alot of info....  I will do my best to update you specifically how to pray each time as it's alot of info and the side effects and risk vary depeding on what i am getting.  It is going to be a tough couple of months as I do not get a break from treatment.  I will be receiving Isotretinion whenever I am at home along with GM-CSF.  So, here goes....
Before I go into the  prayer request many of you may be asking why we are doing this espcially when you hear the risk when I am cancer free.  Well, very small amounts of Neuroblastoma can be present that are too small to be detected by a microscope.  These small amounts are called Minimal Residual Disease.  Although I have responded AMAZINGLY to treatment (Thank You Jesus) the truth is that High Risk Neuroblastoma has a high relaspe rate and is harder to get rid of if it returns.  So Daddy and Mommy have prayerfully considered what is best for me and feel this is the path God has us on.  We will take this day to day.  That's all we can do.  We know that the same God that brought us this far will carry us through this next part of our journey through childhood cancer.  Please pray for me this week.  Most likely I will be nauseated, have severe pain in my back, abdomen, cramping, arms, legs, head, nerves, headache which will require administrating of pain releiving medicine (which will start one hour before treatment)  I could have an allergic reaction which could be life threatning with fever, hives, tongue sweeling, shortness of breath or wheezing, low oxygen levels in the blood, low blood pressure and a rapid heart rate.  Loss or change of sensitivity to touch (numbness or tingling)  a slight drop or rise in blood pressure... There are many other possible side effects too many to list (The Lord knows each one of them & as Daddy reminded Mommy tonight the same God who carried and protected me through Chemo will carry and protect me now). Pray for wisdom for the doctors and nurses to stay ahead of the pain ( I will be on a morphine pump)  to be able to detect early if there are any complications and meet them head on.  Pray that my body will tolerate this treatment.  It is possible to have to stop the immunotherapy at any point due to potential risk to my overall health.  Thanks for your prayers.

January 7, 2011

Rejoice!!!! Rejoice!!!! The Lord God Almighty Reigns!

Well my is indeed a day to celebrate!!  All my tests and scans came back CLEAN!!!  This means no evidence of disease in my body!  Praise the Lord...He truly knows the plans He has for me and He isn't done with me yet!!!  We are going out to dinner to celebrate and back home to watch the Aggies play football..Gig 'em!!!  Beat Tigers!!!!!

Thank you, thank you, thank you, first, to God for His power  and work in restoring my health, then to all of you who have prayed for me and my family.  Our powerful God behind those prayers is awesome!!!! 

Not to put a damper on my day ... please continue to pray for mommy and daddy as they have lots of information to consider and decisions to make regarding the next step in my treatment.  Lord, work in them in such a mighty way that they know beyond a shadow of doubt the road we will take! 

Praise God...Praise Him....Prise Him!!

January 3, 2011

When my heart is overwhelmed lead to the rock that is higher than I.....

Happy New Year to all of our family and friends! Words cannot express the thankfulness We feel for all of the many ways you have ministered to our family this past year. We are thankful for the meals, the endless laundry you have washed and folded, the time spent cleaning our house,  the financial gifts that have truly helped ease the medical expenses, the gift cards that have given Jason and I much needed date nights, taking our kids to school and picking them up, the parking tokens, those of you that have spent hours at the hospital helping make the time go faster for Halie as we have waited for endless test, labs and hospital stays. Thank you, for the prayers, the shoulders to cry on the ears that have listened and prayed with and for us. Thank you. You have been the hands and feet of Christ for this weary family. Thank you to those of you who have given so much time and effort to raise money for Neuroblastoma research!  (I am excited to take the check to TCH this week Morgan!)  I feel quite reflective as I look back over 2010! My emotions have run the gamut. This journey that has taken us from our comfortable life to a roller coaster of emotions that often leave us feeling like we have been ransacked by a tsunami but, it has also taught us great truths about God and I feel I can confidently say with Job "I had heard of you by the hearing of the ear, but now my eye sees you". 2010 was a year of pain and suffering but it was also a year of great triumph. In May our daughter was given a 10-15 percent survival rate after her diagnosis to 6 months later being No evidence of disease. There have never been sweeter words to my ears. So, now after 5 rounds of high dose chemotherapy, a 9 hour surgery, 12 rounds of radiation and a stem cell rescue we begin 2011 at Texas Childrens hospital getting scans that will determine the next path God will carry us through. Today as write this I am sitting in the family waiting room of the Pacu as they take bone marrow from each of my daughters hips to determine if their is any new growth. We are praying that she will be no evidence of disease following her scans and tests this week. I have to confess I am tempted to fear. The seemingly endless what if's and the realities of this disease are lurking in my mind waiting to overtake my thoughts and then I am reminded to look to Christ.  My hope, Our hope is in Him.  Not the protocal as thankful as we are for it, not the doctors as appreciative as we are for there tireless and often thankless efforts to help our children, not in the ch.14.18  which as terrified as I am of it ( a later blog) is so promising.  My hope is in Christ.  He alone is my refuge.  I know now what it means to hide in the cleft of His rock.  I never really understood it before but now I do.  He is our shelter in the storm. He is the immovable shelter, the strong arms that hold you up while the storms rage and threaten to knock you down and overwhelm you.   He will carry our family through this week.  He will give us the strength to get up in the morning and endure 3 more scans, test & injections and do it again the next day...  even if my tears have to come along with me.... (thanks mom)  Please pray this week.  Here are specific request:
Bone Marrow Test (free from Cancer)-- Today
Tuesday -- Echo, Ekg, Bone Scan ( pray that the treatment we have done so far has not damaged her heart, that there has been no new growth in her bones)  No evidence of Disease!
Thursday -- MIBG scan and CT Scan ( Pray that there is No evidence of Disease and that the spot in her lung is gone. 

Thank you for your faithful prayers.
The Pigott family