Perfect Fit

This week Georgia and our friend Anna had their first fitting with Ann Marie, the designer of Ana Louie for the upcoming Gilda's Club fashion show.  The girls had a great time, they were so patient with all of the fitting and pinning then got in a quick game of hide and seek.  Georgia's dress was just the mock up of what she'll wear but I got a sneak peek at the fabrics they're going to use, it's going to be beautiful.

 Two beauties

 Ann Marie the designer

 So serious

 This model stuff is hard work!

She couldn't fool us, she's having a great time!

Anna is always the professional,

she helped collaborate on her dress!

Georgia 2.5

Jody is a good friend, one I met just a few weeks into my freshman year of college.  She is the kind of friend that I can go weeks even months without talking and the instant we reconnect it's like no time has passed.  She has been a strong supporter from the moment this journey began, somehow there was always an email or text message with just the right words coming at just the right time.  I would be in a moment where I didn't think I could take anything else and a message would come through simply saying, "Winston Churchill, When you're going through hell keep going."  This friend of mine means so much to me.
Yesterday afternoon I'd posted Georgia's 2 1/2 year old video here and on Facebook, by that evening Jody had sent an email, this is what it said....

Good evening, my friend!  I was so excited when I saw your FB post today about Georgia turning 2.5. she has got to be the happiest, smartest, most well-adjusted 2.5 year old on earth. How the hell does that happen?  Answer:  good parenting.

Anyway, got me thinking how far you all have come and felt extremely inspired just reminiscing about your journey and where you are right now at this very moment.  What a beautiful child you have and amazing family.   

I made a movie in your honor today...

Thank you my wonderful friend, you have again sent something special to me .  We love the video and I love you! 

http://www.youtube.com/watch?v=gIlMLAzyacI&feature=youtu.be

2.5 and 16 Months!

Today you are 2 1/2 and 16 months post transplant Georgia!  This morning I thought about where we were 16 months ago and was instantly fighting back tears, then I looked at you and smiled.  You are so full of life, happy and thriving.  You are also full of words, here are a few of my favorites:

I bumped your finger on accident and you said "mama, finger... love you so much no!"

When you don't like something that I'm doing you're quick to respond, "stop do-ning (doing) that!"

When we ask you where you live you always say "Peace Jungle" we have no idea where it came from but it sounds like a lovely place.

When you hear the coffee maker beep in the morning you say "mama, coffee ready for you!"

You love to point out motorcycles and when I ask you what mama says about Georgia riding a motorcycle you laugh and say "no way, dangerous!"

I asked you the other day what you were doing, you replied, "nofing citing" (nothing exciting)

Lately when I tell you what were going to do next, ie: eat lunch, go outside, go to the store, you respond with "good plan."

You still love clothes and continue to change your clothes multiple times a day.  You get such a kick out of picking out each item and putting it on by yourself.  I often see socks and sandals, rain boots and a sun hat and always lots of color.

You are my neat and tidy girl, you are always asking for a napkin when you eat and don't like having a "messy face" as you call it.  You are helpful in putting away your toys and laundry.  A few weeks ago I thought you'd have fun finger painting, about two minutes in you lifted up your hands and in a somewhat stressed voice said, "mama, messy hands."  I do think our need for keeping you as germ free as possible contributes to this but I am seeing more and more signs that this is also just in your nature... now if I could only get you to let me brush your hair.

I love you my girl, I couldn't be more proud.

Soul

I know I'll never understand why Georgia had to have cancer and I've stopped searching for that answer.  Throughout the last 18 months I've seen so many tragic stories and have often asked, why?  I have made an effort to stop asking questions but several weeks ago I learned something and literally said aloud, "you've got to be kidding me."
Lynette Johnson is an incredible woman who founded the non-profit organization, Soulumination.  She has worked hard to grow this organization that takes photos of children in life threatening situations or are terminally ill, she wants to give families something to hold on to.  We were lucky enough to have Lynette capture some pictures that I treasure.  Soulumination is here because of Lynette, the  photographers that she has brought together have the ability to come into the lives of people, sick people, scared people and capture moments that are so pure and true.  
Lynette is this creative life force, you feel different when you're around her - she's something special.  Several weeks ago I saw a post on Facebook that took me to Lynette's Blog on the Soulumination website, Lynette had just been diagnosed with lymphoma.  What is so incredible about her is that since that initial post where she talked about literally hanging up on her doctor and going to kick something, Lynette has posted pictures in various masks and super hero costumes stating "we need to have a lot more fun with cancer than is expected."  Earlier this week she posted, "okay guess it time to gather my weapons, put on the big girl undies and boots and let her rip, chemo here we come, a little kicking and screaming, a bit of calm as I know I have love on my side and a touch of spunk..."
Please keep Lynette in your prayers, she started chemotherapy today and is sure to show lymphoma whose boss! 

The day Lynette was diagnosed the thing she said would lift her spirits was if she could get 1,000 "Likes" for Soulumination on Facebook, she achieved that goal but if you're on Facebook please keep it going.  Here is a link to Lynette's blog and the Soulumination website, it really is an incredible organization, please consider donating.


http://www.soulumination.org/index.php/site/entry/i-get-by-with-a-little-help-from-my-friends

Park, Purell and a style all your own

Georgia you are at such a fun age right now, becoming more independent and self sufficient and loving a little more freedom.  The other day after you woke up from you nap we decided to take a trip to the park.  In true fashion, you wanted to change your clothes, you picked out every single item and put each one on yourself.  When you picked out sandals to wear I assured you that you didn't need to wear socks too but you insisted.  I asked if you wanted a clip or rubber band to keep your hair out of your eyes (a new thrill of ours!) and you decided on a headband that you promptly put on yourself.  After putting your shoes on you stood up, looking proud and said "ready!"  On the drive down you asked if the slide was broken (aka too many kids at the playground) and I said we'd have to see when we got there.  We arrived and much to my delight the playground was nearly empty.  You walked up to the steps leading to the slide, grabbed my hand and slid down, at the bottom you asked if you could get off on your belly, sure, I said.  The next trip up to the slide you asked if you could hold onto the railings (something we try to avoid because all of the other runny nose kids touch them) my heart sank a little because you are so compliant with all of the restrictions put on you.  Knowing I had plenty of Purell I said to go ahead. 
I love the confidence I see in you and so appreciate that we can communicate about the special care we need to take in certain situations.  We're working on it Georgia, soon the slide will never be broken and although I'm sure I'll always have Purell, maybe we'll leave it in the car. 

Happy Mother's Day

Dear Georgia,
Today I get to celebrate being a mom because of you.  I am one of those people whose known her whole life I've wanted to be a mom, growing up I was indecisive about a lot of things but never about desire to be a mom. 
Someday if you choose to have children you'll understand the way I love you, it's impossible to fully grasp until that day arrives.  All of the cliches are true, I love you so much it hurts and there are times when I think I could literally eat you up! 
I am so proud of you and who you are becoming, you are caring and kind, have strong opinions, love to laugh and you've got a style all your own! 
I am fortunate to have had an incredible role model, grandma Claudia taught me so much, helping me to figure out who I wanted to be, what things really matter in life and she always gave the most unconditional love.  I can't promise to be perfect, but hope I can be to you what she was to me.  I know that I got more from her in 19 years than some get in a lifetime.
There will be times when I think I've run out of patience or you think I am the worst thing that's ever happened but know that I love you my girl, every minute of everyday.  My first wish for you will always be health but beyond that I want you to be happy, whatever that means to you.  I will be here to help you achieve your goals, be an ear to listen and to help you gain focus when the world doesn't seem fair.  I will love you no matter what.  I feel so lucky to have you has my daughter Georgia, I love you so much.

Love,
Mom

Luau!

Today was absolutely beautiful in Seattle, the perfect day for Lauren's luau birthday party!  Thanks to Auntie Leslie for keeping the party small so "GG" could attend, she had a blast!  Happy birthday Lauren, we love you sweet girl.

 Double Trouble

 Grammy & Georgia

 Blake & Lauren

 The birthday girl

TWO!

Happy second birthday to the sweetest niece an auntie could ask for. You're mama and I can't wait to see you and Georgia grow up together, with just under six months between you, I think you'll both give us a run for our money!   We love you so much Lauren!

Tricky

I'd just barely hit the "publish" button on my last blog post when the phone rang, it was the SCCA calling about the labs Georgia had taken earlier that day.  We checked her labs again this week because her Sirolimus level (big immune suppressant) was running high.  The Sirolimus level was still pending but there was a bit of concern around her liver function tests.  As we talked about the numbers and what they could possibly mean I could feel my heartbeat accelerate, in an instant I was panicked and was wondering if this was the world playing some sort of joke on me, as if laughing saying, "were you just saying something about letting go?" 
The possibilities are these, her body is still working on getting rid of the nasty stomach virus she had, possible but unlikely that her high drug level is effecting it or GVHD of the liver.  In my heart of hearts I don't think it's GVHD but it's a very scary idea, GVHD in the liver is very serious.  Labs are tricky, they only tell part of the story, then you have to go hunting for the rest.  The plan for now is to have her labs re-checked early next week and go from there.
After I hung up I realized that we needed to get ready to go to our Gilda's Club fashion show meeting.  With my heart still pounding I went in to check on Georgia who was still napping, I woke her up and was immediately irritated that she had to miss out on sleep to go.  The last meeting we'd gone to was a bit overwhelming for Georgia and I didn't want to put her in that situation again.  We arrived at the meeting and Georgia seemed to perk up, once she saw our friend Anna walk through the door she was all smiles - finally another kid!  Turns out Georgia had a blast at the meeting, goofing off with Anna and practicing her runway walk.  After our first meeting I was starting to second guess our choice to have Georgia in the show simply from a shyness standpoint, last night she had a ball and she's already asking when she gets to see Anna again.  The meeting last night was exactly what I needed to get my mind off of things and just see my girl having fun, ah life, it's so tricky.

Anna & Georgia

Let me just say, Anna is a natural, poses, struts down the runway - she's ready! 

I think Georgia is warming up to the idea of walking the catwalk. 

Georgia and I will walk together but here the girls are practicing together.

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!