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!