Let go and begin

I've never thought of myself as controlling, in fact quite the opposite.  It's funny how life experiences can show you different sides of yourself, ya, life can be a real riot.  Since Georgia got sick I could feel things getting out of control, and as hard as I tried, I didn't get to control how things would go.  I have done my best to pick my battles and fight for what I thought was best for my daughter but I have certainly struggled with life not meeting my expectations.  It's hard to wish for something and feel like you're doing all that you can to help make it happen and it doesn't.  Georgia's eating and weight gain have felt like my job, I like to do my job well.  Over the course of the last year I have been working on letting go, of expectations, for this process for Georgia and myself.  I have come to realize that letting go is an art form, not easily achieved and something that requires tremendous practice.
After a recent bout with the stomach flu Georgia's prednisone taper was pushed back.  Over the weekend her eating returned to normal and her labs looked good.  On Monday I talked with our PA at the SCCA, we talked about if Georgia was ready to start her taper.  The original taper was supposed to drop her dose down every five days and our doctor didn't feel that it was necessary to stretch that out but said to do what ever I was comfortable with.  I told our PA, we don't need to be the fastest or the best, I just want to do what it right for Georgia's body.  We decided to drop the taper down every seven days which will last approximately eight weeks.  Today we started, 0.2ml less than what we've been doing, a tiny drop that feels like a huge step. 
As life does, I am provided with another opportunity to fine tune my skills of letting go.  My hope is that Georgia's body, and more so her gut is ready to remain healthy and fully functioning without prednisone... as with everything in this life, all you can do it take it one day at a time.  Today I decided to let go of what this taper should look like, so today we begin. 

Off to a good start!

This weekend was filled with cousins playing, pre-birthday celebrations and a whole lot of fun.  The sunny days made for some great outdoor play for Georgia, Blake and Lauren all of which made me happy to tears.  Thanks to my sister for hosting a family birthday dinner last night!  Today Georgia gave me a big hug and said, "happy birthday to you" then we headed to the park, tonight Brian and I are heading out on our second date in 18 months!  So far 35 is off to a good start!

Slow & Steady

Things here have been busy, I wish I could say fun-busy but I can't.  Last Monday we had our monthly clinic visit which went fine, Georgia's labs look good and she'd gained weight - finally 26 pounds!!  We talked about what activities Georgia would be doing this summer and about her upcoming fashion show that a few of her doctors will likely attend! 
The next day we met my sister and Georgia's cousins at the zoo - how normal, I loved it!  Seeing the kids run and play together makes me so incredibly happy.  By that evening Brian and I were talking about the Prednisone taper that would start the following week, we're ready, I thought.  Georgia wasn't very interested in dinner and told me her tummy hurt, then out of the blue, she threw up.  All of a sudden it was clear that the "food poisoning" we thought Brian had a few days earlier was a stomach virus.  That night was rough, Georgia was really sick and feeling miserable.  Brian's bug lasted 2-3 days so I was hopeful this would pass quickly.. not the case for an immune suppressed kiddo.  A week went by with improvements but slow ones and two things were clear, Georgia didn't weigh 26 pounds any more and we wouldn't be starting a Prednisone taper. 
The last several days have been much better and her eating has almost returned to normal.  After talking with her docs and having labs done we decided to push her taper out a week at least, we'll be touching base on Monday to see when we'll start.  Likely her taper will now drop down every 7-10 days instead of the current 5 day drop. 
All in all this feels like an unnecessary sucker punch but I know she will get back to 26 pounds (and beyond) and that the taper can wait.  Just a reminder of slow and steady, that's how this goes.

 Georgia & Lauren at the zoo

 Blake

So happy to see her cousins!

Surviving With Style

One day in February my phone rang, I glanced down to see that our SCCA nurse was calling, instant panic set in, I wasn't expecting a call from them.  This panic must have come through as I said hello, our nurse quickly said, "this is a fun call"... um, I thought, I didn't know those came from the SCCA.  She went on to tell me about Gilda's Club and how there are chapters of this fantastic non-profit organization around the country who offer support to cancer survivors and their loved ones.  Every year Gilda's Club has a fashion show and luncheon called Surviving With Style, all of the models are cancer survivors.  She asked if she could pass our name along to the coordinator, after a few questions I gave the okay and the next day got a call to discuss the details.

Last week we met with Ann Marie Louie, she is a local designer who is making a special dress for Georgia to wear in the show.  That same evening we attended our first Gilda's Club meeting about the fashion show and met a room full of incredible cancer survivors.  At the time of the meeting Georgia was the only child in the show, since then we happy to hear that our friend Anna will be modeling as well.  They don't intend for a two-year old out on a runway by herself, so I will be walking with her.   On the way home from the meeting Georgia said several times, "people, very loud"... hmm, wonder what she's going to think of the Westin Ballroom full of people, I may be carrying her down the runway.  As each model walks the runway their story is told, it's sure to be inspirational and emotional all at the same time.  The fashion show and luncheon is hosted by Cynthia Nixon and sounds like it will be an incredible afternoon. 

Here is more information:

Gilda's Club

http://www.gildasclubseattle.org/

Mission Statement:

Gilda's Club Seattle offers a broad, community-based program of social, emotional, and educational support for cancer survivors, their loved ones and friends that provides sustained support, education and resources on-site in the Seattle Clubhouse and off-site with collaborating partners. Free of charge to participants, and nonprofit, we offer a Five Core Component program that includes a variety of support services, educational opportunities, classes and workshops, social events, and resources and referral. Our program serves anyone touched by cancer across the cancer continuum -- from diagnosis, through treatment and post-treatment, survivorship, and bereavement, including children, teens, and whole families.

Ana Louie Apparel

http://www.analouieapparel.com/

Fifteen Months Post Transplant

Georgia,

You are becoming so independent, picking out your clothes and dressing yourself, climbing into your car seat, overall wanting less help with everything. 

You are full of conversation, last night as we were looking at a book you pointed to a purple car and said "buy one".. I said, "you want to buy a purple car?" you scrunched up your nose, tilted your head to the side and said "umm, ya!"  The conversation continued and when I asked how old you need to be to drive a car you said, "ahhh, ummm four half." 

You are learning your colors and have purple and orange down.  You are counting higher and higher, and can go up to 15 then start to skip around until hitting 23.  You have almost mastered your ABC's and are very proud of this.  Your favorite game is hide & seek, you run to your closet, hide behind the curtains and call for us to come find you.  We come in and say things like "Where's Georgia, is she at the beach?  You'll reply "no" with a giggle... "is she at the store?".. laughing harder "NO!" then finally we say "is she in the closet" and you pull the curtains back, and with a huge smile exclaim "YES!" 

We are working on identifying feelings and often talk about things that are frustrating and things that make you happy. The other day you told me that you were frustrated that Lauren has a cold, then said "Lauren cold, all done!"  You miss your cousins.

At night you talk about who is going to sleep, you start to name off several people, stop and say "ahhh, ummm.. who else?" then name several more.

You continue to grow, seeing your pants get shorter is so thrilling, and we (finally) had to buy you some new shoes!  Last week we started the re-immunization process, necessary but not fun.  Life is moving forward and it feels so good.  We are looking into some kids classes for the summer and continue to count the days until cold and flu season is officially over.

Happy 15 months post transplant my love, we are so very proud of you.

 Tiptoe through the tulips

 Swimming in the bath has become a favorite activity

Your hair is getting so long it gets in your eyes

but you rarely let me pull it back.

 Where is Georgia?

 Ta-da!

Georgia O'Handsaker?  Not quite an O'keefe but I love it!

A little video of you doing what kids should - run!

Heavy Heart

I am so incredibly sad to post that our friend Mia died this morning.  This girl, this amazing child was such a fighter and so full of love.  She fought for three long years and all I can hope for is that she is free from pain and suffering forever.  Please send thoughts and prayers of love and comfort to her parents and her twin brother Noah - this is such a special family.

Spring!

It's spring time in Seattle and flowers aren't the only things that are sprouting up... we have smiles and ponytails too!