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

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 playroom....it 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.

 

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

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. 

Here we go....

Day 1 IL-2
Prayer request
LIKELY:

• 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......