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!!!!!!!

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.   

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......

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 happening....today...not a fun day ..please pray for me!!!  I can't eat anything until the doctors change out my central line.  Yes, you heard me right...my 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 and...well...my whole family!  OK  gotta jet for now...I hope they call us back soon!

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.