Tuesday, June 28, 2011

Current favorites...


Your pink rhinestone sunglasses.. you prefer to carry them with you just about everywhere you go.


You love to point our things that ding.. or as you put it "ning" like glasses clinking or me scrambling an egg in a bowl.. you also point out things that go beep like the coffee maker, car horns, and your pump.


You're already showing your nurturing side, you like to snuggle bee and your baby.. you also like to share food and juice with them.. when you put your cup up to their mouths you make a sound like they're drinking.. I get a kick out of it every time!


You love to help with chores - I think your favorite is helping unload the dishwasher and believe it or not you are actually helpful.. you are the silverware master.


You think you're pretty funny when you put your hands together and wiggle your fingers and say tic-kle, tic-kle, tickle, tickle.. increasing your speed with every word.. daddy is usually your target.


Clearly you're watching what we do and how things work.. recently you like to take your waffles out of the freezer, the other day you took one out of the package, walked over and opened a cupboard, pulled out the shelf and tried to put in into the toaster... nice work!


You're becoming more and more independent, you want to (try) dress yourself.. you love to put your own pants on.. most of the time they are actually pants but sometimes you'll give it a go with a shirt. I can only imagine what things will be like when you can pick out your own clothes.. the other day you only wanted to wear a pair of (hand-me-down) white linen pants.. what can I say, you've got style!


Here is a video with a new "skill" (still in progress)... twirling!






Dishwasher assistance


I wonder if you'll be this eager as a teenager?

Feeding Bee

Pants (almost) on

Putting your pants on


Putting your waffle in the toaster




Friday, June 24, 2011

A Marathon Among Marathons

Meredith and I met through a moms group when our girls were just a few months old, we clicked right away, bonded by our fears and frustrations of conquering mommy-hood. I remember calling her while Georgia was getting her first MRI, I kept saying, she's just a baby... Meredith understood, her daughter Charlotte is just three weeks younger than Georgia. In between our first hospital stay and transplant Meredith called and said she had something to tell me, she, a non-runner like myself had decided to join Team in Training which benefits the Leukemia & Lymphoma society, she was going to run a half marathon honoring Georgia.
Tomorrow is the Rock & Roll Marathon, Meredith has been training like crazy, is the top fundraiser for TNT Seattle, has had t-shirts made and is going to do a fantastic job! Through her involvement with TNT we have gained so much support from people we've never met - I've received pictures from training runs and encouragement along the way. So to all of the runners, good luck... but to the TNT runners, especially Meredith, thank you, we're proud of you and your achievements!



Charlotte & Georgia last fall



Team Georgia!



Go Team Go!



Training run picture



More support from TNT WA/AK



From a sorority sister in Alaska






Here is Georgia's motivational speech for Meredith & TNT for tomorrows race:



Sunday, June 19, 2011

Happy Father's Day!

Happy Father's Day to a daddy who loves his daughter.. so many adventures ahead for the two of you!


Giving daddy some love


Giving daddy a .. refreshment!







Saturday, June 18, 2011

Day +150

Oh Georgia girl, I can hardly believe it, when you wake up in the morning you'll be 19 months old! This month has been one with a lot of change and development.. you're taking it ALL in! You are constantly on the move wanting to "wa-wa" (walk) and love to repeat words that daddy and I say... the other night as I was trying to get you to sleep you looked at me and kept saying "mayme, mayme.. so proud of repeating my "maybe". You love to point out and say baby.. you know what a baby is but you also think that anyone being pushed in something with wheels is a baby.. this would be a stroller and a wheelchair. You're becoming very polite saying please ("peas") and thank you (or something that sounds a lot like it). You are also starting to put words together, here are a few that I've heard recently:

- bye-bye da-da
- me night-night
- more peas (please).. my favorite
- no, no mama.. the one I hear most often

In my desperation to get you to eat we try a lot of different foods in a lot of different places.. recently you've taken a liking to eating things on toothpicks (thank you for the idea Katie!) but last night you were in a pampering mood wanting to eat french fries (cooked in butter nonetheless) while taking a bath... I couldn't have been happier! This was followed up by another favorite of yours.. having your feet rubbed - every night when we get ready for bed you take my hands and put them on your feet and say "more".. maybe I should think about putting out a sign for the Handsaker's Spa, specializing in french fries and foot rubs!
The thought of how much I love you almost takes my breath away. You're fun, funny, wise beyond your time and the absolute light of my life.
Tomorrow is a big day, not only do you turn 19 months old, and not only is it Father's Day.. but five months ago you got your transplant - we've got a long way to go, but we have certainly traveled some ground.


"Relaxing" in your chair

Georgia, where is your tongue?

sweet girl

You LOVE being outside!

Showing off your new sidewalk chalk

Thursday, June 16, 2011

Day +148

Today as I was waiting for the call from Children's Hospital on the results of Georgia's MRI I sent an email to a friend,, I told her how things are so hard and I feel like I've slipped and can't get my footing again.. a short time later the phone rang and I feel like I've finally got some traction.
Georgia's MRI showed "continued healing" and that the area where the dead cells are is measuring smaller than about six weeks ago. This is what we wanted to hear, it's important and it allowed the weight that has been sitting on my chest for several weeks to let up a bit.
I am working on refocusing and getting back to the new version of my old self, not to live in constant fear but to take in today and all that it has to offer. Georgia's labs have for the most part been rock stable since transplant, seeing that change while seeing a young girl lose her battle with cancer has had an incredibly profound effect on me.. that's part of who I am too, sensitive to a fault sometimes but for now I have to put that on the back burner and stay on track with my girl - we can only live our story and today we got some good news.

Tuesday, June 14, 2011

Day +146

I don't know if these emotions have been waiting for the right time to strike, or if all of this is becoming more real as it continues on but the reality is I'm a mess. I feel just like I did when all of this started, I want to wrap Georgia up and run away wanting to hide from it all but we can't and that is so absolutely heartbreaking. I don't know why I thought this would be easier, it isn't.. it truly feels like it just keeps getting harder.
People always ask if I'm getting a break and truthfully the answer is no but I wouldn't have it any other way - being away from Georgia right now is even more stressful than managing what our lives require. I love my girl so much it hurts and her need for me is what keeps me going.
I want someone to tell me every things going to be okay, or keep going you're through the worst of it, but no one can.. I want some guarantees and that is impossible.
Seeing someone I know lose their child to cancer is certainly making this harder, it feels like a giant neon sign flashing "life isn't fair"..
Knowing that crumbling isn't an option, tonight I took the tattered four leaf clover that Georgia and Brian found in the backyard yesterday and pressed it between two pages of the book The Little Engine That Could.. the page reads "until at last the reached the top of the mountain."

Saturday, June 11, 2011

Day +143

I have always operated as a glass half full person but lately there has been a lot of frustration and asking the question why. I thank god every day for Georgia, she is literally the light of my life and what keeps me going, she makes me smile and is my reminder that there are good things in the world.
Last week when talking with Georgia's doctor, I said, when all of this started we were told this would be a marathon.. it's a not marathon, it's more like 10. She looked at me and said it's so hard to tell families how to prepare for this because it is such a long, hard haul.

I am frustrated because we had to restart Georgia's steroids because essentially she wasn't set up to succeed. The one drug that was suppose to be supporting her whole body as three medications were tapered off wasn't watched closely enough and fell below therapeutic levels for a bit.. this allowed the GVHD to flare so we start again. Starting again isn't as simple as a few days of medicine, it is a minimum of a 50 day course of two steroids then we try again to taper.

Life right now is a game of what I should be afraid of.. it's always changing but it's always there. I'm scared of her not eating or weighing enough, I'm scared of her lab results, I am scared of GVHD, I'm scared when my phone shows 987-0000 is calling.. Children's Hospital but most of all I am terrified of disease. I want the world to leave us alone and let us move on, instead this week we gear up for our Monday clinic visit and an MRI on Thursday.

I hate complaining or feeling bad for myself, it's not who I am .. I'm certainly not moping around the house or throwing my hands up, Georgia and I play and dance like nobody's business and we make the very most of every single day - I know we have years ahead of us where things will be simple and not filled with fear.. I'm just trying to let it go to keep up the fight.

Monday, June 6, 2011

Day +138

Yesterday we were discharged from Children's, happy to be home yet still feeling on edge about getting things settled down again. We're working with our Children's docs and those at the SCCA on new plan for meds, weight gain and moving forward.
Tonight I am writing from home, thankful to be here but incredibly sad because I just read that today the world lost the sweet girl I'd talked about just a few short days ago. Sometimes, more often these days then ever before, this world doesn't make sense to me.

Friday, June 3, 2011

Day +135

Without any fevers overnight I was hopeful that this had passed... by late morning Georgia's fever was over 102 so she was again cultured and we bought ourselves at least another 24 hours here. The team decided to give her IVIG although she has reacted to this blood product every time she's had it, and her "level" for needing it was last discussed to be 200, they felt that even at 325 she should get it today since she could be "pre-meded" and watched closely. This turned into hives all over her face, hands and feet just two hours in to the six hour infusion so it was stopped... this accompanied by the fact that her chest x-ray showed what might possibly be a sign of a virus had me feeling like I often do when we're inpatient, it's a ride that once you get on, it's hard to get off. If the fever persists they want to do a nasal wash to check for viruses... this buys us five days in isolation - isolation with a very social toddler should come with a padded room.
As frustrating as it is to be here there is something happening that is making it much harder.. a teenage girl who we know, not well but we know is dying. There have been streams of visitors to her room across the hall since we arrived and after reading her mom's caring bridge site this evening I am sitting here in tears, she is keeping her daughter comfortable, loving her and losing her. Part of me wants to know what I can do to help this family and part of me wants to run out of here.. it's terrifying because it's too close. I know that we're not this family, we are dealing with a totally different types of cancer but we are similar in that we are both families of the SCCA Unit and that allows me to identify in the most uncomfortable way. Tonight I am praying for comfort and peace for this lovely girl.

Day +134

I am sad to report that we were admitted to Children's this afternoon, that darn fever just won't go away. One of Georgia's blood levels was concerning to our doctor so she asked to see us after our previously schedule lab visit today... wouldn't you know it, Georgia's fever was up so after consulting with the SCCA the decision was made to admit us. Right now the gist is this, the concerning level that they are looking at is her bands, these are immature baby cells that can "grow up" and become a few different things... when our doctor told me today that she didn't believe Georgia's increased bands looked like disease I about fell out of my chair - I didn't even realize that was on the table... I guess it's one of those things that is never off. Today Georgia's labs showed that her eosinophils were also up, this can be caused by three things... a parasite, allergies or GVHD. The combination of the bands and eosinophils leads the doctors to believe that this is a result of a GVHD flare - this makes sense to me, we were tapering two steroids and one immune suppressant all while the other immune suppressant was not at a therapeutic level... too much for her fragile system.
The plan is to restart the two steroids (we were only off of one) at their original dose, continue the taper of the immune suppressant and get the other one to a therapeutic level.. we hope this will get Georgia eating more, putting on weight and calm her system down. My understanding is that once this fever is gone for 24 hours we'll be able to go home.. hopefully this will be very soon.
I have to be honest, I am handling this better than I thought... better than I would have just two days ago - I can't really say why, I think maybe knowing that we need to solve this problem and the likelihood of that happening here was pretty high given the circumstances. From the moment we walked back onto the floor everyone has been wonderfully supportive and happy to see Georgia, although all wishing it was only for a quick visit.

Here is a picture from this evening - there are always beautifully knit hats at the front desk and Georgia was asking for one... she was pretty pleased with her choice.