Tuesday, March 27, 2012

Getting a port

Its 4:04pm and Gabriella is finally getting her port.  She also had a bone marrow biopsy and the doctor said it went well.  She doesn't expect to find anything but we needed to rule it out.  It's been a long morning, longer for all of us than for G.  She had a great time playing with Nana, Bridget and Auntie B.

She is such a trooper going all day long with only juice at 9:45am.  It was hard for us to eat because she wasn't eating.  There was some delay with the surgery because they had an emergency situation with the first case and this pushed everyone back a few hours...uggg!  What can you do?  It sucks because we are only in control of so much. Yet we are hopeful that we are in good hands and will be taken care of.

There is so much I want to write here but I just don't know where to start.  Yesterday was a good day.  We got some great news which Adam posted.  We were both very optimistic about the treatment and expected outcomes.   We are worried about saving her life and they were discussing saving her ovaries! We took this as a very good sign of course.  Adam and I just want to see our baby girl graduate from high school, college and make a difference in people's lives.  It will be a hell of a road to get there but damn it...we will do it!!

 I was so happy coming home that I went for a run (Ellie needed it too) and hollered as I ran down the street.  I'm sure people thought I was crazy but it felt good.  Electra and Steve came by with a yummy dinner.  Uncle Ronnie and Auntie Mel came by and the kids had a blast!  At some point, we will establish our normal routines and get back on track.  For now, we are enjoying...just enjoying the moments we can.

As for the wig, I have been gathering information.  G will probably loose her hair in about 2-3 weeks. The wig will take about 6-8 weeks.  I don't think just my hair will be enough, so if anyone wants to donate some hair, I'll find a way to attach the website.  They say the minimum is 8-10 inches, 12-14 is better but it doesn't matter to me.  It's just something I can give to her.  Some have asked me if they can donate to get a wig.  We are looking into having insurance cover it so that's to be determined.  Adam and I as well as the rest of our family continue to be amazed by all of your generosity and kindness.  We are deeply touched.  I would like to thank each and every one of you personally and find a way to repay you all for everything!  Good will come of this.  As for now, just waiting to hold my little girl. Both of them actually.

 Trying to entertain our girl and laugh as we wait for surgery. 
- Kristin


  1. Kristin I have been keeping in contact with B about what has been going on and I am still trying to wrap my brain around it. .You and your family are in my daily prayers and I told B I don't know how I could help but if you need it I'll do it. I have a friend who was going to do the locks of love I can ask him if he ( yep he ) is still going to do it. Thinking of you and your very brave little girl. Go Team G!
    All our love, Kirstin and Callahan

  2. Kristin, I too have been keeping in contact with B and your mom and dad. B and I were just talking today about the wig. Ella, my daughter (7 years old) would like to offer her hair to Gabriella. Our intention was to donate to Lock of Love as soon as she had enough to cut. She has 10-12 inches that can be cut and used. I told Ella about Iskandria's cousin and she got sad. I told her she could help by donating her hair to Gabriella and she said she would like to do that. So, if you want it, it's yours. I have a hair cut scheduled for the weekend of 4/7 at Nirvana as my best friend is a stylist there and she is more than happy to do the cut. I will keep in touch with B, of course, but wanted to let you know we are here for you and your family...anything we can do. All our love to you and your beautiful family.
    Mimi Desmond