Day -1!

Everything on our Day -1 schedule is now complete! Naomi’s rATG is finished and her cyclosporine infusion has begun.

She enjoyed going to music therapy today.  She and Micayah have had their own music therapy going on in the room today, too, as they take turns creating music on the iPad.  

Again, like yesterday, she was in a very good mood; dressed, hair braided and playing with a new round of toys from the van.  Today, she requested her baby dolls and all their things.  

I love that she is out of bed most of the day and active.  I appreciate that she can go to the playroom for a bit, too.  It gives Micayah and I a bit of a break.  It gives her a sense of accomplishment and break from the room.  Today will be the last day that she was able to attend activities like that until her recovery begins.  While in isolation, the child life specialists will visit her to keep her from getting too stir crazy.

This afternoon, I received a visit from the musical therapist who was impressed with her natural inclination to music and looks forward to working with her while she is here. That was exciting for Naomi. We also had a visit from the art therapist who brought paints. We decorated the room with pictures we all painted.

Her cyclosporine infusion that began today will go in almost continuously over the next 24 hours.  Micayah has his procedure first thing tomorrow.  He is scheduled for 9am, but I need to have him there at 7:30am. Her infusion of bone marrow will be sometime around noon, I believe. The schedule has not been locked in yet.

The biggest challenge continues to be her lack of an appetite.  She is also getting frustrated by the weight of the fluids going into her catheter.  Too bad that weight does not count on the scale and it does not provide the calories we wish she was taking in.

Tonight, I took Micayah out for dinner.  Soon, he will be getting an early night of sleep.  While out we had a heart-to-heart talk about the fears he has about tomorrow. I was able to tell him that I understood and compared his being a donor to me having experienced childbirth, especially the first time. There is a lot of uncertainty but the result makes it worth it. Also, I helped him change his perspective by telling him that any pain or discomfort he experiences will be temporary, but him being her hero is everlasting. No matter what she does in life, it will always be him that made it possible. I told him that God used Aaron and I to give her life initially, and now He is using Micayah to continue that life. That is nothing to take lightly.

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





Support Naomi by commenting here! She loves to read your posts!

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s