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......

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!

BAKE SALE UPDATE!!!

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!

Home at last!!!!!

Enjoying my family at home...praise the Lord!!!!

The storm is raging all around...Jesus says...peace...be 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?