"Tana"

Last week we hit a big milestone, our first plane ride and trip to Montana since Georgia was about three months old.  She was excited about going to "Tana" she kept saying, "go to Tana, get new boots!"  She'd been promised new cowgirl boots from Grammy and Grandpa.  Despite not enjoying the plane ride over Georgia had a fabulous time, so did I!  

As Georgia is able to do more things I am learning more about what new things she likes and doesn't - she's isn't afraid to share her opinion and one thing is for sure, you can't predict the outcome. 

Brian was able to make it over for two days and wanted to go out on the boat, at last check (about a year ago) Georgia didn't like being on a boat but I thought since this was a pontoon boat it would feel more secure, not so much.  Once we set out on the lake Georgia wanted to "be all done with the boat" so we headed in.  She recovered quickly by stripping down and splashing in the water.

After the boat experience we were all convinced that she wouldn't like the Alpine Slide up at Whitefish Mountain and she surely wouldn't want to go on the chairlift.  She showed us, she went on the slide a total of seven times and had no trouble with the chairlift!

We splashed in the river behind my parents house, saw deer, went for walks and did the Walk of the Cedars in Glacier National Park. It was a fabulous week with a whole lot of smiles and laughing.  Thank you Grammy and Grandpa  - we can't wait to come back!

 

 This pretty much sums up how Georgia felt about the boat ride

 

 Enjoying the view of Whitefish River

 

 Georgia didn't like the airplane ride or the boat but neither of those things bothered daddy - she liked the chair lift - that's all he cared about!

 

 Alpine Slide with Grandpa

 

and again with Grammy

 

 The whole gang at Whitefish Mountain

 

Hard to tell where the trees stop and the water begins
 

 Wildlife in the neighbors yard

 Grammy & Georgia on the mountain

 

 Tall tree, small tree

 Braving the chilly water in Glacier National Park

 

Georgia, did you have fun in "Tana"?  I'm going with yes!

Nineteen Months Post Transplant

Who would have thought?  Nineteen months ago we were living in the hospital with Georgia hooked up to countless things hanging from her IV pole.  Today we are on our first full fledged vacation visiting Grammy & Grandpa in Whitefish, MT.  We have been here for several days and Georgia is having a ball.  She decided last night that she'd like to go back to the alpine slide on Whitefish Mountain to celebrate 19 months post transplant. 

We took four trips down, once with Grammy, once with Grandpa and twice with me, most of the way down she was either chatting or saying "weeee!!"  On our last ride up the chair life we were quiet, just looking around and she said, "Mama, I'm having a good time." 

I can't quite describe the joy I feel seeing her run around having fun and simply enjoying life -- how sweet it is. 

Happy 19 Months Post Transplant my girl -- many more good times are ahead.

 Splashing in Whitefish River

This is one of SEVEN trips total down the alpine slide.

Sixteen Years

Today I have thought a lot about where I was 16 years ago today, I so vividly remember the moments and the pain and numbness I felt.  Losing my mom at 19 years old was devastating, and something that I thought would always top the list of the hardest things I would live through.
I have run through many emotions since Georgia was diagnosed with the same cruel disease that took my mom.  I have been angry, feeling like she was supposed to prevent this, why wasn't she watching over us?  Her name is Georgia's middle name because I wanted to pass along her strength and wisdom not a legacy of disease.
I clearly remember a conversation I had with my mom in the last weeks of her life, I was telling her that it wasn't fair, she responded, "honey, life isn't fair."  We talked about her belief that she had in a sense signed a contract with God, agreeing to the terms of her life, so some how, at some time she was okay and agreed to how her life would unfold and she couldn't go back now.  This is not to say that she wasn't mad as hell that she was dying, she worked so hard to raise my sister and I to be who she knew we could be and now she woudlnt' be around to see the fruits of her labor.
That contract she talked about has crossed my mind many times over the years and more recently I have found new meaning in it.    I have come to believe that perhaps there was a paragraph at the end giving explanation as to why she died at 53 years old.  I have to believe that she knew when she signed that contract that many years after she died she would be the reason that her namesake didn't have to.
I love and miss you mom.  You are talked about and remembered.  On a clear day when you can see Mt. Rainer I point to it and ask Georgia, "what is that?"  She responds, "Grandma Claudia's mountain."

Grandma Claudia

Georgia Claudia

Go Abi Go!

Please send positive thoughts and prayers to our friend Abi, today she is getting the transplant that some doctors said wouldn't happen.  Abi has relapsed with AML three times and through it all she maintains her incredibly infectious, positive, shining personality. 

Some of you may know Abi from the Children's Hospital video that went viral, she's the first and last person you see.  She didn't stop there, she re-wrote the words to a rap song and made it her own.

Wishing you love, strength and health Abi, you've got this one.

Georgia affectionately refers to this as Abi's song -

http://www.youtube.com/watch?v=ihGCj5mfCk8

Abi's own video -

http://www.youtube.com/watch?v=z_QyxfbdJag&sns=fb

Positve Forward Motion

Today we had what I would consider a big appointment at the SCCA.  Georgia has successfully been off of Prednisone since July 11th, she's held her own, gained weight and today we met to see what's happening on the inside.
Based on how Georgia is eating, acting and playing I knew going into today the odds of it being a "good" appointment were in our favor-- that never seems to calm my nerves as much as it should.
She's grown taller, gained weight and internally, aside from some slightly raised liver numbers is doing well.  The bump in the liver function is minor but something that will be watched closely.  Shortly after our doctor and PA walked in the room I was handed a taper schedule.  The taper is for her Sirolimus, the big guns of her immune suppression, a step that is only taken when certain criteria have been met-- it's big.
The plan is this, we start the taper tomorrow, if all goes according to plan it will last five weeks.  Once she's off of Sirolimus all together she will be monitored for any signs of GVHD for six months as this is typically the time you would see it flare if it's going to.  I asked what the odds were, I did my best of letting go of expectations for the Prednisone taper and will try and do the same here but I needed to know.  Our doctor said he'd give it a 90% chance for success, based on where she is post transplant and the fact that she got bone marrow versus peripheral blood-- I immediately thought of our donor who was given a choice of what he was willing to donate.
During these appointments we often cover what Georgia can and can't do, come September 5th, the first day off of immune suppression, she's been given the green light to play in good ole' fashion dirt.  I don't think I will have her start making mud pies in the backyard but finally I will be able to let my guard down some with outdoor play.
I am so thankful that we get to take this next step but am certainly terrified as well.  Life won't immediately change once immune suppression is done but it will be a major milestone. We will maintain our conservative lifestyle until March as Georgia getting sick could flare her GVHD.
It's scary to allow yourself to think several months into the future, we've seen how quickly hopes and dreams can be taken away. 
I think probably to the outside world we're jumping up and down, cheering and so happy--  in reality, we're thankful.  When you have seen what we've have seen, full blown celebrations just don't fit the bill, it's more of a feeling of being grateful and respecting the process.  As we made our way through the Prednisone taper I didn't cross off weeks that we'd finished, I didn't talk about being done and even left the taper schedule up on the fridge for a few days after we were done.  I guess it was my way of not provoking any unwanted attention from the "Prednisone Gods." I have a feeling the same process will be followed, tomorrow I again let go and begin.

G.I.R.L.

I'd always heard about nature versus nurture and always believed it was a combination of the two.  I still believe this but had no idea how much is not taught, how much just simply is.  I wouldn't consider myself a super girly girl so I've been so surprised to see twirls happen without teaching, tutus picked without me giving any preference.  Georgia has been emerging all on her own.  A few things over the past couple of weeks have given me a glimpse into what the future has in store...

A couple of weeks ago we got a Mini Boden catalog in the mail, I'm still not sure why we get these because these darling kids clothes are far from budget conscious.  Georgia immediately grabbed the catalog and started looking through it - the kids, I thought, it must be fun for her to see the kids.  Ha!  Within seconds I was hearing oooo-ing and ahhh-ing, "Mama, I wanna buy this" and "Oh Mama, this is cuuuute."  That's right she was thumbing through the spendy catalog picking out her fall wardrobe.  I said, "Georgia, how much does that cost?"  Every item, "five-dollars Mama." 

Today I had to wake Georgia up to head to Children's for an early blood draw, this hasn't happened in a while and was met with sobbing and repeated "I don't wanna get a poke."  I felt awful and promised her a trip to the park and said we could get the new bucket she'd been wanting.  I made good on the park and when it was time to go she asked about getting a bucket.  I told her we could go to Target and pick one out on the way home, she stopped, "no mama, clothes."  I said, "you choose, you can get a toy or one item of clothing at the store."--- no hesitation, "clothes."  We headed to Target and she browsed for a short time before telling me she'd found what she wanted --- a dress, cotton white top with colored stars and a tutu style skirt, she was thrilled.  I made sure she saw all of her options but she was certain this was the one.  No mention of a toy, no mention of a bucket, just grinning from ear to ear with her new dress in hand.

Clearly I have myself a girly girl and you know what, it's so fun.  My future holds lots of dress up, telling her even though everyone else has it, no she can't wear the uber-mini skirt and many trips to the mall.  To top off girling things up, last week I was putting Georgia to bed and was sure she was almost asleep, it was silent, then I heard in a voice plain as day... "I like boys." 

Heaven help me!

Olympic Hopeful

Last night Georgia and I watched a bit of the Olympic opening ceremonies. I tried to explain to her that the athletes were the best in the world, that this only happens every four years - that the Olympics are something special. She wasn't overly excited about the opening ceremony performance but once she saw the athletes she started pointing to the TV. Two gymnasts were interviewed, when she saw them tumbling and flipping around bars she looked at me and asked, "Mama, I do that someday?"  I looked at her and said, "Georgia, of anyone I know you my love could be in the Olympics.  she said, "you come?  I said, "I wouldn't miss it!"  We chatted about it a bit more and by the end of the evening she'd decided she wanted to be a runner in the Olympics.
Just before bed Georgia asked me, "Mama, you be in the Olympics?"  I smiled and said, "oh, I'm too old to be in the Olympics."  She looked at me, tilted her head to the side and gave a little sigh, she said "that's a bummer."  Well put my friend, well put.

Here is a glimpse of our future Olympian stretching before her big run.