Day +188

We started off this week with a clinic appointment first thing Monday morning, my usual dance had an added weight this week. I found out just a couple of days earlier that our friend Mia, an incredible four year old, has relapsed just three months post transplant. There is a certain camaraderie that parents of children battling cancer have, this bond is made even stronger when you add transplant. I didn't know it before but transplant is just a whole different ballgame.
We are thankful to report that Georgia's labs looked really good this week and much to my surprise her weight was up to 10.3kg which is a number we haven't seen in quite some time. All of this confirmed that we will be getting her central line out on Tuesday, a huge relief.
We have been so blessed with love, prayers and support from so many people, please, as you continue to send healing thoughts to Georgia send them to Mia as well, she's a fighter.. she's known to many as Super Mia.

Mia, nurse Aaron & G in late May showing off their sunglasses

Day +180

Twenty months old and six months post transplant - today is a good day. Georgia you continue to amaze me, you're a happy, social, active girl! You're body is continuing to defy the norm, we finished your Tacrolimus taper a couple of weeks ago and the docs said that it can take weeks sometime months for the body to re-regulate and hold on to the magnesium, potassium and phosphorus that this medication wastes.. your levels were normal three days later! This allowed us to stop your overnight hydration and we just got the green light to get your line removed - yahoo!
Here are a few pictures from each of these momentous days...

20 Months Ago...

Six Months Ago...



Today!

I caught Georgia the other day in my closet picking out shoes.. it seems to be her new obsession.. she loves putting on her own shoes and tromping around the house. She recently found some boots and is quite entertained by taking them on and off and trotting around .. I think she likes the noise the zipper makes... perhaps we should start a shoe fund along with her college fund!

Day +174

It dawned on me yesterday as Georgia and I were in route to her clinic appointment that this isn't a test.. I was what you would consider an average student - I got decent grades but would have done better if I'd put in more effort, studied harder. Life today isn't so straight forward, to some degree I feel like I have been beating my head against a wall thinking, we can do it better, just "study" harder and you'll get the "grade" you want. I am working on accepting that I have studied hard, put in the effort and the next step is to let go. I will continue to do all I can, but I am working on accepting that I can't control it all because no matter how you slice it, this is bigger than me.
Yesterday Georgia and I rearranged the living room, Brian read in a magazine recently that you should do this every so often to keep the good energy flowing in your house.. here's to letting the healthy, hungry, happy energy flow!

Awesome

Recently Georgia was given a card and a very special gift from a total stranger.

The front of the card reads:
You. Are. Awesome.

Inside:
And by awesome, I mean totally awesome.

The note inside says:

Georgia,
My name is Jason. Although we have never met, the stories I have heard about you lead me to believe you are one of the bravest people ever! I could only hope to be as strong, brave and determined as you. Keeping your story in my thoughts and a picture of your beautiful face on a necklace I wore during a triathlon I just did, I had my best race ever. I have no doubt I owe that to you, and the inspiration I got from you. Because of that I think you deserve these medals more than I do. Thank you for being such and inspiration and keep fighting hard.

Well Jason, we think you are totally awesome too... thank you!

Jason sent two medals, one for first place and the other for participating in the triathlon. Here are some pictures of Georgia checking out her gift and also the Team in Training badges that people wore during the recent Seattle Rock N' Roll Marathon.

Hmm, what are these?

Thank you Jason - I love them!!

TNT Badge

Georgia looking at her picture.

Bedtime.. and other serious topics

Georgia's favorite toy came while we were in the hospital, our wonderful neighbor Debby sent us Bee.. who could have known what a hit this little giggling stuffed animal would be.. we don't go anywhere without Bee.. stroller rides, car rides, we feed him, snuggle him and the moment I tell Georgia it's time for bed her response is always the same, "Bee?" Recently some others have made it into Georgia's inner circle.. here is a picture straight out of bed this morning, the new bunch includes... Baby(1), Bee, Chappy Dog, and Baby(2).

Ya, so I have a lot of friends..

Putting Georgia to bed at night can sometimes be frustrating.. I'm tired at the end of a long day and there are a million things I need to get done once she falls asleep. With her ever expanding vocabulary Georgia usually chooses bedtime to rattle off her new words.. last night it was Why.. a stream of "why, why, why" had me giggling and she couldn't have been more pleased. Tonight as usual I had wanted bedtime to be earlier so I was in a hurry to get her to sleep.. this is a snippet of her word tonight.. I was rolling, called Brian to come in and listen and he was rolling... and all of a sudden it didn't matter what time it was - these are the moments that melt away stress and make your entire day. I think we either have a future pirate or an aspiring rapper on our hands.

(due to bedtime this is audio only.. lights were out)

Day +166 - Independence Day

Today as we celebrate independence in America, we are celebrating independence from a regular clinic visit, a week off.. this is the longest we've gone since December.
The past couple of weeks have had ups and downs and the jury is currently out on where we stand.. Georgia's labs have been holding steady which is great, liver functions are back to normal or just slightly above, we finished our Tacrolimus taper but eating is still hit and miss. Last week we had our first "Continuing Care Clinic appointment at the SCCA, in the days leading up to this appointment I found myself very bitter that we had to go - I so badly wanted to be done with the SCCA but because of the GVHD flare we needed to be seen by one of the docs that specializes in GVHD - fortunately this is a doc whose been with us all along. No surprise the message was the same as it's always been - we want her weight up. I understand and agree, I want her weight up too.. the one factor they don't give any leeway on.. she's a very active, picky toddler! Some weeks she wants avocados and french fries but others all she'll eat is broccoli and bananas. There was a new discovery, upon examination of Georgia's mouth the doc saw some white "spidery" lines.. this is chronic GVHD... they don't treat this type of GVHD, at first my stomach sank - not more GHVD... but we were told that this is a positive, patients who have chronic GVHD have a lower risk of relapse. I know this is a good thing, but in this case it's just a different version of scary. All in all the doctor looked at us and said "I want you to know Georgia is doing fantastic." I wish that made me feel the way I think the word fantastic should. Of course I am thrilled that he's able to say this about my daughter, but our day to day life is hard and filled with uncertainty. If Georgia's GVHD flares again, or her eating drops off when the steroids are tapered (again) she will certainly be put on Prednisone, likely at a low dose but likely for a minimum of nine months.
As we move forward, our hope is for continued independence, independence from clinic visits, labs, overnight hydration and medicine. Our family, but certainly Georgia belongs in the "land of the brave".. we'd just like feel a little more a part of the "home of the free!"

Happy 4th of July