Day -5

The day of the transplant is known as Day 0, or her new birthday.  In Naomi’s case, Day 0 is January 15.  Up until Day 0, we count down.  Today, Friday, January 10 is Day -5.  

Her schedule includes 4 days of chemo and 4 days ATG in overlapping fashion, like this:

Friday 01/10/14 -5 Admit to Peds 3 West Fludarabine 30mg/m2, Cytoxan10 mg/kg
Saturday 01/11/14 -4 Fludarabine 30mg/m2, Cytoxan10 mg/kg rATG 15mg/kg 
Sunday 01/12/14 -3 Fludarabine 30mg/m2, Cytoxan 10 mg/kg rATG 1.5mg/kg 
Monday 01/13/14 -2 Fludarabine 30mg/m2, Cytoxan 10 mg/kg rATG 15mg/kg 
Tuesday 01/14/14 -1 rATG 15mg/kg Start CSA 1.5 mg/kg lV BID
Wednesday 01/15/14 0 Infusion of bone marrow 
Thursday 01/16/14 ‘l MTX 10 mg/m2
Saturday 01/18/14 3 MTX 5 mg/m2
Tuesday 01/21/14 6 MTX 5 mg/m2

Day -5

She was admitted at 11:30ish.  It took a while for us to complete admitting stuff.  Then, Micayah and I unloaded the van at the hotel, went grocery shopping, and brought Naomi her things.  After being gone for 2 hours, I returned to find her hooked up to the pump getting fluids while playing with a Light Bright.  Since she will be starting her chemotherapy tonight, we need to keep her as hydrated as possible.  She is doing very well with her fluid intake and has been drinking for me consistently.

Fludarabine and Cytoxan are the two types of chemotherapy she will be receiving.  They will each be infused over 30 minutes and she will get the two types one after the other- not at the same time.  Over the next few days, it will be essential to keep her drinking well and using the bathroom frequently so that there is as little damage to her bladder and kidneys as possible.  This means that I will be up with her a lot throughout the night.

As you can see by the schedule, she will be having rATG tomorrow beginning on Day -4.  So, she gets chemo tonight (Day -5) and then rATG in the morning (Day -4).  ATG is a special serum genetically engineered by injecting an animal with human white blood cells.  Then, the animal’s body creates antibodies to destroy the white blood cells.  These antibodies are the taken from the animal and given to the human – to destroy the human’s white blood cells.  In Naomi’s case, she will be getting ATG that was grown in a rabbit.   “r” in rATG stands for rabbit.

So, that is what will be happening over the next 12-18 hours.  

While meeting with Dr. Pawlowska today, she was very happy with Naomi’s current condition and we both agreed that now was a good time to begin the transplant – while she is not in a critical situation.  We did not want it to progress to that point.  With all the uncertainty around Naomi’s blood tests over the past few weeks, we cannot be sure what caused the elevated liver levels but are thankful that they are down where we need them.  Her serology reports were repeatedly inconsistent over the past few weeks.  

Naomi is very content, for now, and is fully aware and informed of what is going to be happening.  She is prepared to work with us and understands that we will be asking her to get up out of bed when she does not want to but that it is for a good reason.

The road ahead is still along one.  We are extremely grateful for the prayers and well wishes.  Thank you everyone!  (Please say some extra prayers for Aaron as he is alone at home with most of the children!)


3 thoughts on “Day -5

  1. The Day will be coming that all of us will all have been looking forward towards. Like a comet in the night sky, or the sun rising in the morning sky. All of us look forward to the “Great” success of seeing both Naomi and Micayah back home and in good health.Take care all of you out at the City of Hope. Many Prayers for you for your safety and health.
    Uncle Ross/Ross

  2. Such a long drawn out procedure for such a small angel, I still have my church praying for Naomi’s procedure and I am praying for everyone involved, your brave son who will give his sister life, and your family that has been by her side throughout. You have done such an excellent job of what all of you have experienced, perhaps a book? I will pray, pray, pray. You must be exhausted, but GOD is good. I wish all of you well. Teresa

    • We are most grateful for all the prayers. I believe that the prayers and thoughts of all of you have helped us this far.

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