Minutes

As this year draws to a close I'm ready, ready to move forward and put the heartaches of the last 12 months a little further behind us. The lyrics of a song from the Broadway show Rent have been playing over and over in my head for weeks, almost haunting me.... 525,600 minutes, how do you measure, measure a year? Every time this line plays in my head I fight back tears. So many minutes that have left scars on my heart. 
We have made many friends through this journey, we keep tabs on some through their blogs and websites - several months ago one mom wrote that she'd been reminded that we're all Gods children, so our children are really just on loan to us. I have struggled with this immensely this year, many times I have pictured myself in a complete rage screaming at God, "SHE'S MINE!!" and yet equally as many times I have whispered out loud, "please let me keep her."
As the year has gone by I have done less arguing and negotiating with God and more looking around to see all of the things I am grateful for.  I remember so many minutes of love pouring in from far and wide, the rally of support has been astounding.  One thing is certain, I could not have survived the last year without Georgia, I realize this sounds a little odd given the context, but she is what keeps me going and keeps my faith alive.  In the minutes where I didn't think I would make it she would fill me up again.  She is a ball of energy, joy and love all wrapped up in a darling little two year old girl - she's amazing.
My hope, my wish and my prayer for the coming year is that the minutes have less to do with doctors, meds, GVHD and cancer and are instead filled with playing, growing, laughing and living. 

Here's to a HEALTHY 2012 and beyond.  Happy New Year.

Merry Christmas

We were lucky enough to celebrate Christmas three days in a row this year, seeing both of our families and more importantly Georgia got to play with her cousins!

Christmas Eve -
Brian was still flying so Georgia and I headed over to my parents where we kicked off Christmas with the Pittmans.  Grammy and Grandpa did a scavenger hunt for the kids and for the second year running my dad rented a Santa costume so Georgia could sit on Santa's lap - I'm so grateful, but I don't know that Georgia was.

 Helping Grandpa open

 I love my cousin!

 Lauren, Georgia & Blake

 Santa... noooo

 Tackle Time

One last snuggle

Christmas Day -

Brian made it home really late Christmas Eve, we were all so thankful to spend the whole day together.  When Georgia woke up we told her it was Christmas and that she could (finally) open those presents she'd rearranging for weeks.  She walked down the hall and spotted her big gift from Santa - a new bike!  That evening we headed to the Pittmans for more festivities.

 Look what Santa brought!

 Feeding her new baby

 In her sled with her long johns on..

 but it looks like a future surfer to daddy!

 Cousin fun

 

December 26th -

We kept the celebration going with all of the Handsakers at our house, Georgia could hardly wait for the babies to arrive!

 Landon & Holden

 Mom, the babies are upside down

 Snuggling Holden

Having a little chat with Auntie Lex

Day +335

A dear friend sent me this poem a few days ago.. I am reading it daily trying to trust that these words are true.


THE GUEST HOUSE

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

-- Jelaluddin Rumi,
    translation by Coleman Barks

Day +333

Today we were lucky enough to wake up to sunshine so after we got our chores of eating and taking meds out of the way I told Georgia it was time to get dressed so we could go outside.  Georgia has been very particular about her clothes for a while now but easily put on a turtleneck and leggings... then she ran down the hall saying two.. two... which she does when she's counting, I quickly realized she was actually saying tutu!  One more article of clothing and we were set to head outside to play.

 Striking a pose

They don't come cuter than this!

11 Months Post Transplant

In looking at you today Georgia, you'd never know... you'd never know what happened 11 months ago and all that is still happening.  You truly define the word resilient and I am so lucky to have you as my daughter. 
Since turning two just a month ago you continue to move (even) faster, are putting three word sentences together and have decided to potty train yourself!  You continue to be a little clothes horse and like dressing yourself, you sleep with some of your favorite clothes and wore a hat to bed the other night... I can only imagine what things will be like when you are a teenager!
Life without an NG tube makes all of us happier, you're eating well and doing a great job taking your "ah's".  I tell you daily that you are my big, strong, HEALTHY girl which you like to hear.

 Your first pigtails!

A Georgia Handsaker original

You may be immune suppressed but that doesn't mean you

don't recognize things you'd like to play in.. DIRT!



It was brought to my attention that with the removal of Georgia's NG tube we needed a new opening picture for the blog... as if I needed an excuse to take more pictures of my girl!  Today we headed to the park and had fun running around and getting pictures of this beautiful face.

I was talking to my sister the other day, telling her something funny that Georgia had done.. she said, you need to write this stuff down so she can read it someday.  Well, Georgia at two years and three weeks old here are some of my favorites:

• You like to tell me what to wear, or I should say what I can't wear - "mama no, mama no" when I put on my bathrobe, glasses or most hooded zip up sweatshirts.
• Your favorite "game" is still ni-night which entails me laying down on the living room floor and you covering me with blankets, often I get a pillow too then you rearrange everything, snuggle and repeat... I'm not complaining!
• You are becoming quite the clothes horse.. you like to pick out your own clothes and sleep with some of your favorite shirts.
• You love repeating the ABC's although you have your own sequence of letters from time to time.
• You still love music and dancing, with Christmas approaching you've picked your favorite song, Feliz Navidad.. you literally gasp and run to the living room to dance when it comes on the radio.
• Recently you are enjoying "hide & seek" or should I say, cover yourself with a blanket and yell for mama to come find you!
• For the past three days you've decided it's time to use your potty, when I empty the pee into the big "potty" and flush you yell, "PEE BA-BYE!"

Life is never dull Georgia - I love it!

A,B,C... D?

Perhaps Christmas in a Spanish speaking country is in order!

Where is Georgia?

Day +322

At out last SCCA clinic appointment a taper of Georgia's NG feeds were discussed, we agreed on a schedule that would take approximately two weeks.  The doctor noted that if she pulled the tube out the next day he wouldn't put it back in... I jokingly clarified - wait, if she pulls it out or if I pull it out?  As much as I wanted to be done with the tube I knew it wasn't smart to pull it out and go cold turkey on getting Georgia to eat and drink as much as she needs to.  Over the last (almost) two weeks Georgia has done well with eating and drinking, we talked to her about her "line" going away and that to make this happen she needed to eat and drink.  Day to day her eating is consistently inconsistent which I hear is pretty normal for toddlers, overall I think she's doing fine. 

When the tube was first placed I stayed adamant about Georgia taking her meds by mouth, with the addition of prednisone and three other medications as well as restarting calcium and a multivitamin (those needs were being met through the formula) I have defaulted to the tube some... this will be another transition for us. 

For over a year I have hated the idea of a feeding tube, it was first discussed last October and I dug my heels in on more than one occasion to avoid it.  In September it was brought up as a way to avoid prednisone, then weeks later we found ourselves having both, it felt like I'd lost two battles.  Looking back the tube was the right thing to do and although it was hard on Georgia I don't regret the choice.. within days Georgia's skin improved dramatically, she's grown taller, has put on weight and is developing like a normal two year old. 

Once we'd agreed to have the NG tube placed I asked our doctor how long she thought Georgia would have it, she said, 4-6 weeks... today, 13.5 weeks later I pulled the tube out.  You'd think I would be excited but really what I feel is pressure - to make this work, meaning getting adequate calories and hydration in.. to make sure all meds are taken, to make sure we don't have to do this again.  I will resume having anxiety before setting her on the scale at her appointments and dread discussions that cover how I as her mother am meeting the needs of my child.  I am hopeful that being tube free will have a positive impact on Georgia's eating and that we are heading in the right direction.

This morning I sat Georgia down and told her that she had done a great job eating and drinking and that it was time to be all done with her line... after I pulled it out she picked up and I had her throw it in the garbage.  This afternoon Georgia wanted to change her shirt and looked at me and said "tape?"  her line was always taped to the back of her shirt so she needed help before taking it off... I said, no honey, no more line and no more tape.... I think it will take a little while for things to sink in.

Georgia demonstrating what she needs to do to be line free...

 and yes, we often eat on the floor.

The time has come...

 Look no tube!

Now I get to see her WHOLE beautiful face -

no tube, no stickers, just Georgia!

It's beginning to look a lot like Christmas

After much debate on if we should invest in a good fake tree and make the jump to becoming a fake tree family or if we should make do with the tiny fake tree we had last year we settled on a compromise.. big fake tree that didn't break the budget so we can resume our live tree tradition someday. 

With our new tree assembled (which made for **almost** no swearing) we were ready to decorate.. Georgia loved going through the boxes, pulling out ornaments and directing Brian and me on what to do with them.  With Chirstmas music cranking there was dancing and decorating - we've officially kicked off the season! 

 Testing out the stockings

 Checking our Santa, she has taken to blowing him kisses -

as if she needs to be concerned with being on the naughty list!

 As Georgia gets older I realize how confusing the world is - nose or knows, two or too - this is no different with Christmas ornaments as we found out... Georgia, this is your ornament, look it's shoes!

 Silly girl

 Daddy helping with an ornament

 I think I can do this..

 A dance break from decorating

Georgia - do you like decorating for Christmas?

The next morning, first request was for "lights" - the tree is a hit!

Thanks to my parents we have outdoor lights up too!

Believe

Recently I was getting things together to send out our Christmas card, as I was thumbing through addresses I came across what we sent out last year. The last almost 14 months have been hell, there's no doubt about that but even with all my frustrations, fears and uncertainty I still believe.. I have never stopped believing in my daughter or that we will see this through and someday move past it.  I had no idea the depth and breadth of the word marathon but I believe we are moving forward, maybe at a snails pace but we're doing it.  I believe with every fiber of my being that this is terrifying and we can do it, she can do it. 

This is what I posted last year just before Christmas, it's what I ask of you and what I truly believe...

Believe there is magic this time of year, believe that prayers will be answered, believe in the technology that modern medicine offers, believe in the power of non-traditional medicine, believe that you have touched our lives and made a difference. Believe in the human body and the human spirit. But if you choose to believe only one thing let it be Georgia, her strong will, vivacious energy and the ability to conquer whatever challenges lay ahead.

Day +312

Since finding out that Georgia would be put on Prednisone I have been struggling with, well frankly, being pissed off about almost everything... what she can't do, what we have to do, with how much she understands and has to cry her way through anyway, it all has become much to much.  We have been in this battle for over a year now and I just thought we'd be in a different place by now.  A year ago my pesky optimistic side had me believing we'd be done with immune suppression and starting our new lives, post transplant with a new immune system running on all cylinders, we're not there.
Monday night I didn't sleep, anticipating our appointment at the SCCA the next day.  Since having her new NG placed Friday Georgia wakes up saying "line no, line away" and this continues throughout everyday so I was very motivated to get a taper started, we're done.
I was what I would say politely pushy with the dietitian when I brought up a taper, she said "she'd check with the team"... Well, I said, we've reached a point where we need to be done with this tube, it bothers Georgia a lot and it's time to see what she can do eating wise.  This is a part of this process that is particularly maddening to me... "let me check with the team?"... I would like to think that I still have some control over what happens in our lives, I don't have to call them at every turn to see what I can or cannot do with my daughter - it is highly irritating! 
In the end, the appointment went fine, we've started a taper and the plan is to be done with the NG feeds in a couple of weeks.  I told Georgia that we are working on making her line go away, I said, you need to eat and drink to help make your line go away... she promptly
walked over picked up her cup and took a drink then looked back at me like - ok now?  Such a smart girl.
We are in wait and see mode as far as GVHD is concerned, the goal is that her eating will pick up and that she will continue to gain weight, this will be a sign things are improving.  I talked to the PA today to clarify a few things as Georgia was really upset during our whole appointment - she's become wise to lab draws, doctors visits, all of it which makes this all the harder.  I told the PA how I view GVHD to make sure I was in the right mindset - it's not as if Georgia has a cut and we'll see if it's healed in three months, it has to do with her new systems living in harmony together... what Prednisone is doing is suppressing her T cells, basically telling them to calm down, the hope is that Prednisone will make them calm and keep them calm.  The next step is then to taper the Prednisone and hope that her T cells stay calm and that both her old and new systems can live happily together.  Only time will tell and there is nothing I can do to speed that up.  Everyone has been very clear that three months is the very minimum before a taper would be started.
One other detail that was confirmed is that again, we can't have a live Christmas tree - we still can't have any live plants in our house as there is a risk of mold infections, this risk was increased now that Prednisone is on board.  This won't change until she is off immune suppression all together.  It just makes me sad, these are the little pieces of this process that are reminders there is still a long road ahead.
I am hoping that once the NG tube is gone I will regain some sanity because I won't be up multiple times a night refilling her formula - sleep brings clarity.  I know though that my stress level will be running high for a while, Georgia will have a full work up in January complete a with bone marrow aspirate and biopsy, skin biopsy, dental and eye exam as well as a massive blood draw all to see how her little body is doing one year post transplant. 
We continue to be so thankful for the thoughts and prayers from so many family, friends and strangers.  Please, when you think of Georgia send her healthy thoughts, from her left femur to her gut and to all the blood running through her body.

Thankful

I can't lie, in the days leading up to Thanksgiving it was all to easy to come with a long list of things that I am not thankful for, right now life just seems extra hard.  With the addition of prednisone and at least a six month set back in tapering immune suppression I have found myself in a place that I have successfully avoided for the most part - I'm angry.  I'm angry that I can't give my daughter all of the things she wants, I'm angry that she now has four additional medications to take and I'm angry that it feels like we aren't gaining any ground.  I would like to tell the world to leave us alone, or at the very least go pick on somebody else.  I'm tired, beat up and feel like life continues to chew me up and spit me out all while I try and put on a brave face for my girl.
Yesterday I was thankful that although Brian had to work he had a Seattle overnight and we were able to have dinner together.  After I told Georgia that dada would be home for dinner she ran around saying "dada eat, dada eat."  We sat down to dinner, held hands and said Grace - Georgia was a bit confused at her parents holding her hands and closing their eyes at the dinner table but she sat quietly - we gave thanks for our family, the kindness so many people have shown to us and for a stranger, there is a young man in Germany who has changed our lives and we are certainly thankful for him.  What I am most thankful for is my daughter, she is the only reason I am able to move through this process.  For better or worse I always go back to being an eternal optimist and I'll get back there soon, I just need a break to be really mad at what's happened to our family.  The evening ended by Georgia's NG tube malfunctioning and we had to pull it out so for now my frustration continues - it has to get better soon... until then this little turkey will keep me smiling.

Currently Georgia has two favorite things - taking her pants & diaper off...

 and putting on her new cowgirl boots!

Georgia with her very first snowman

It's My Party!

Here are some pictures from the festivities yesterday...

 I'm 2!!!

 Georgia, Blake & Holden

 Sisters.. and two tired mamas!

 Georgia snuggling Holden

 Georgia's new boots

The best part of the party... playing with cousins!


Mama & G

Lauren

 My favorite little ladies

Hooray!

 The loot!