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...

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 knows...as 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!

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.

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

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!!!!!!!