Thursday, June 25, 2009


That title is about how my mind feels right now.....just dotty and blank and numb and tired. I can't describe to anyone the gnawing feeling in my stomach at what is about to happen to our baby. Kris has been packing and preparing for his 5 month lockdown and I have been getting work in order to take as much as I can with me to the hospital next week.

It's now 10:15 and I'm washing clothes-typing on here because I haven't in a long time-and packing whatever I can remember to pack.

We will get up at 4am to get everything ready and in the car and then get Miss Haven up to head to the hospital by 5am. We must meet with doctors and anesthesia by 6am and surgery is scheduled for 7am.

After recovery from anesthesia Haven will be taken to her room on the 8th Floor Inpatient Pediatric Oncology. This is where she will remain. Her chemotherapy is set to start immediately after surgery and will continue for 4 days.

This is an extremely high dose of chemo called Hi CY. These 4 days of chemo will take all of Haven's counts to 0 and her stem cells will be forced to rebuild her immune system on it's own. These 4 days of chemo will keep my baby on lock down for many months. These 4 days will eliminate my baby's immune system for an entire year.

I will not go in to the gory details right now as I can barely process them in my head. I have emailed immediate family members and close friends with most of everything.

We have been told the ulcers will begin around day 7. Hair will completely fall out and many other superficial items we need to deal with.

We're guaranteed that Haven will be extremely sick. Due to the high risk of heart failure she will have an EKG done each done to monitor her.

Again I just can't think about this right now and I can't even explain it all again. My heart starts racing at the thought and I want to throw up. I just want my baby to be healthy and lead a full life and at some point enjoy being a child. We have been seeing doctors since the age of 2 1/2 and we are now 5 1/2. Too long to be in and out of hospitals.


  1. I hear your fear! I hear your emotions! I know this will be tough on Haven and you guys. I am here for you and will help with whatever I can do. I will continue to pray for your precious baby girl!

  2. You all are in my thoughts & prayers. Haven stay strong & keep fighting like the little fighter that you are. To Haven's family & close friends hang in there. You guys are in my thoughts & prayers as well.

    God Bless,

  3. it makes my eyes well up with tears and my heart race to just think of it all. I don't know how you do it. Many blessings to you, your family and your sweet little trouper Haven. I will be waiting to hear of success.

  4. I can only send hugs to your sweet family. I have asked for special blessings for you all in prayer.

  5. I know Haven has a huge fan club, and all her supporters will be thinking of her and praying for her! Beautiful wheelchair, by the way. :) This all must be very scary, but hopefully the outcome will make up for all of it. Thanks for keeping us all updated. Sending only the happiest thoughts to your family,

    Jen O'Loughlin