Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Wednesday, September 8, 2010

One Step Closer

Apheresis machine used to harvest Elle's cells All of our baby's blood was being taken out (or so it seemed)! It was circulated with blood, plasma, citrate, heparin, and calcium through the apheresis machine. They collected her stem cells under careful observation in the PICU. Two apheresis nurses and a 1 to 1 ICU/BMT nurse took care of her and a pheresis doc and 2 ICU docs checked on her. Their concern was calcium shift and hypotension because of her age and diminutive size. Don't worry though, they knew what they were doing and she went back to the BMT unit and did very well. They got even more than the cell goal.

Elle had her G Tube replaced today without too much issue. The Dr. was great but his nurse was a little rough with her, pulling and tugging at her tube to see a marker number. Elle was screaming. The tube came out easily and the new one slipped right in; a Mic-key button. The new tube is lower profile and works well.
Other news is that had no CMV in her urine, her CT showed some improvement, which means her lung infection is gone or nearly and she is back on track. She starts chemo at 0400 on Monday morning and I am scared. Thankfully, Steve will be back Sunday.

She continues to play and smile; she delights me with her happiness every time I approach her crib.

Elle trying out a new teether her Grandma Bonita bought her. She went to 3 stores to find the right one!

Chloe is doing just great. We are working on a special DVD for Elle and she had us all entertained with dancing and her version of the ABC song. A poetry and music therapist helped guide us. Dad surprised me too with a contribution to the effort; a sweet lullaby that my grandpa used to sing to him. It brought me to tears. The services here are wonderful. Carin, the Family Child Life specialist and others facilitate so many activities, teaching moments, and help us find ways to make memories and soothe Chloe and the baby.

Carin, engaging Chloe. She is wonderful.


  1. Becky, I will be thinking of you guys on Monday morning (as I do every day). So glad things are going well! Elle looks great.

  2. Hi Steve and Becky,

    Wow, things are moving along. Wow. I can hardly believe it.

    I know you have thought about this for a long time, shedding tears and making difficult choices all along the journey with your beautiful baby Elle. Never an easy road. I hope you will feel the hope, love and encircling hugs of caring from your many friends, family, and community.

    You continue to be in my thoughts and prayers.

    God bless.

  3. What a cutie your baby is. I found your site through others EB children that are going through BMT. Will pray for her. Thanks for the cute photos and updates. Brenda U RN MN


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