January 21, 2011

Extended stay

God makes ALL things beautiful in HIS time!  Today isn't my day to go home and that is fine with me!  The doctors had to run a few tests on me today, you see, I have infection in my body somewhere. They need to find the source but they have begun antibiotics and I received blood today.  The other test they ran today was on my heart.

Please pray
  • the infection is NOT in my central line 
  • the ECO  and EKG show what they need to see (I hope NOTHING!)
  • for rest for mommy and daddy
  • my brothers and sister understand the delay in our return home (I wanna see them soooo bad!)
  • over all....more of JESUS for everyone!
Trust in the Lord....Lord give me the faith to trust You!

Good night :)

January 20, 2011

Big sigh!!!!!

whew!!!!It looks like this will be my last night for this round!!  Praise the Lord for His protection!!  Yes I still have fever but it is part of the side effects.  Please keep praying...pray my fever doesn't get too high and the pain stays away.  Pray for mommy and daddy...they are tired and could use a good nights sleep.  (right...in the hospital?!?!?!)  Anyway...the doctors say in spite of the side effects I am having I am still doing really well on this treatment.  That encouraged my mommy's heart!  Please pray things continue to go well and I get released tomorrow.  I miss my family....speaking of my family...please pray for my sister and brothers.  I know they are worried about me.  Please pray God will kindly remind them He is in control.I am safe in His power and control.

OK   back to resting....xxoo

January 19, 2011

His mercies are new every morning.....

The fever went really high (105) last night but it was a side effect.  Once I got off the antibody for the day my fever went away!!  Now we are gearing up for today's treatment.  I will be getting out of ICU and going back to my regular room today...that is good because the chairs here aren't designed for daddy and mommy to sleep.  They are tired!!  I will be getting the antibody at the lower dose for 20 hours again.  The doctors expect my fever to return (just like last night) yet this time we all know it is just a side effect.  Still scary but OK. 

Please continue to pray for the same things...heart rate lowered, blood pressure to rise, pain managed, and fluid eliminated. Oh...plus be ready for the high fever again.  Please pray God would continue to reassure mommy and daddy about this tough journey.  It is for my good as hard as it is...one day daddy is going to give me away at my wedding to my knight in shining armor whom the Lord is preparing now for me!!!!!  Love to you all!! 

January 18, 2011

PRAY.... more side effects ~ Jesus help me!

Alrightie.... in addition to the heart rate, fluid retention, blood pressure, pain...now I need prayer for the fever I have.  It has been as high as 104.  I'm still in intensive care which is good because they monitor me closely but it's not so good for mommy and daddy...there isn't really anywhere to rest for them.  I am SOOOO glad they are both here ... I love them!!  Thank you for praying!!! 

Day 2 of treatment

Today is beginning better than yesterday.  The doctors have cut the amount of medecine I get each hour in half  and instead of it running for just 10 hours the time has doubled to make sure over a 24 hour period I still get the same amount,  this is going much better.  It isn't as painful and my tummy doesn't hurt like it did.  So far the pain is managed but please pray it stays this way.  Pray my blood pressure goes up, my heart rate goes down and my breathing stays good.  One more thing...please pray my kidneys stay healthy and my body stops retaining fluids.  Thank you for your love and prayers!!

January 17, 2011


This is from Noni's facebook:

Hi everyone - today was really hard for Halie & her mom & dad Please continue to keep them in your prayers. So far this is the hardest treatment for her. She is in a lot of pain & that is hard for us all to deal with. We know God is control, but as humans it is hard to see one we love hurt. Please pray without ceasing for her to continue being strong & for God to help her manage the pain.

A message from Nana as well:

Halie has had a very difficult day. Her pain level has been very high. There has been some problems getting her medication to help ease the pain at the correct level. She is in ICU tonight so they can keep a closer eye on her. Jason and Jenn have had a lot of heartbreak witnessing all of this. Please pray for all of them.
As you can see today wasn't the best for me.  I hurt ALL over and the pain medication needs much tweeking.  There were some REALLY scary moments for mommy and daddy....pray for us ...pray for protection from side effects, pray for peace ...God's peace to embrace us all.  Pray mommy and daddy will get some rest tonight.  Jesus...help us!

January 16, 2011

I will help thee, saith the Lord.

Isaiah 41:14

I will help thee, saith the Lord.

This morning let us hear the Lord Jesus speak to each one of us: "I will help thee." "It is but a small thing for Me, thy God, to help thee. Consider what I have done already. What! not help thee? Why, I bought thee with My blood. What! not help thee? I have died for thee; and if I have done the greater, will I not do the less? Help thee! It is the least thing I will ever do for thee; I have done more, and will do more." "Before the world began I chose thee. I made the covenant for thee. I laid aside My glory and became a man for thee; I gave up My life for thee; and if I did all this, I will surely help thee now. In helping thee, I am giving thee what I have bought for thee already. If thou hadst need of a thousand times as much help, I would give it thee; thou requirest little compared with what I am ready to give. 'Tis much for thee to need, but it is nothing for me to bestow. 'Help thee?' Fear not! If there were an ant at the door of thy granary asking for help, it would not ruin thee to give him a handful of thy wheat; and thou art nothing but a tiny insect at the door of My all-sufficiency. 'I will help thee.'" O my soul, is not this enough? Dost thou need more strength than the omnipotence of the United Trinity? Dost thou want more wisdom than exists in the Father, more love than displays itself in the Son, or more power than is manifest in the influences of the Spirit? Bring hither thine empty pitcher! Surely this well will fill it. Haste, gather up thy wants, and bring them here-thine emptiness, thy woes, thy needs. Behold, this river of God is full for thy supply; what canst thou desire beside? Go forth, my soul, in this thy might. The Eternal God is thine helper!

"Fear not, I am with thee, oh, be not dismay'd!

I, I am thy God, and will still give thee aid."

God used Spurgeon to ministered to my Mommys heart this morning.  She is a little anxious going into Immunotherapy & she really wanted me to share it!  God is so faithful to gently remind her that He is our help and as we begin this new phase of treatment He will help us as he always has.  He will give us the strength to walk this journey, He will give the doctors wisdom to take care of me and He will supply the peace that surpasses all understanding. HE will take care of me....He always has.  It was His hand that has brought me this far and I am safe in his arms.   I get admitted for my first ch.14.18 treatment tonight.  This round begins at 9 in the morning and will run over 10 hours Mon - Thursday.  This drug is a chimeric monoclonal antibody that is designed to attach to specific targets on cancer cells.  In neuroblastoma one such target is GD-2.  Ch 14.18 was designed to attach to neuroblastoma cells and other cells that have GD-2 present.  when ch 14.18 attaches to the neuroblastoma cells, the bodies immune system is stimulated to attack and kill the neuroblastoma cells.  This is called immunotherapy.  Ch14.18 represents a new kind of cancer therapy because it targets the cancer cells without destroying the nearby healthy cells unlike chemotherapy and radiation.  I will also be given GM-CSF which is supposed to increase the anti-cancer effect of monoclonal antibodies like ch.14.18.  I will also be given Interleukin - 2 but I won't get it until feb 6th.  I will be treated with 6 courses of therapy and each course will last between 24 and 32 days.  I will be treated with ch.14.18, GM-CSF, and isotretinoin ( which I will be given at home by Mommy and Daddy)  in courses 1,3 & 5.  In course 2 and 4 I will be treated with ch.14.18 and Interleukin - 2 "IL-2"  In course 6 I will be given Isotretinoin.  Whoo --- alot of info....  I will do my best to update you specifically how to pray each time as it's alot of info and the side effects and risk vary depeding on what i am getting.  It is going to be a tough couple of months as I do not get a break from treatment.  I will be receiving Isotretinion whenever I am at home along with GM-CSF.  So, here goes....
Before I go into the  prayer request many of you may be asking why we are doing this espcially when you hear the risk when I am cancer free.  Well, very small amounts of Neuroblastoma can be present that are too small to be detected by a microscope.  These small amounts are called Minimal Residual Disease.  Although I have responded AMAZINGLY to treatment (Thank You Jesus) the truth is that High Risk Neuroblastoma has a high relaspe rate and is harder to get rid of if it returns.  So Daddy and Mommy have prayerfully considered what is best for me and feel this is the path God has us on.  We will take this day to day.  That's all we can do.  We know that the same God that brought us this far will carry us through this next part of our journey through childhood cancer.  Please pray for me this week.  Most likely I will be nauseated, have severe pain in my back, abdomen, cramping, arms, legs, head, nerves, headache which will require administrating of pain releiving medicine (which will start one hour before treatment)  I could have an allergic reaction which could be life threatning with fever, hives, tongue sweeling, shortness of breath or wheezing, low oxygen levels in the blood, low blood pressure and a rapid heart rate.  Loss or change of sensitivity to touch (numbness or tingling)  a slight drop or rise in blood pressure... There are many other possible side effects too many to list (The Lord knows each one of them & as Daddy reminded Mommy tonight the same God who carried and protected me through Chemo will carry and protect me now). Pray for wisdom for the doctors and nurses to stay ahead of the pain ( I will be on a morphine pump)  to be able to detect early if there are any complications and meet them head on.  Pray that my body will tolerate this treatment.  It is possible to have to stop the immunotherapy at any point due to potential risk to my overall health.  Thanks for your prayers.