Christmas came a little early this year.. we celebrated with my parents last night. Leading up to Christmas you would have thought my dad was a little kid - he couldn't wait to give Georgia her presents! We arrived and I had a much needed cocktail, finally able to take a break from all things hospital and enjoy our family. Georgia started with her smaller gifts - some darling outfits and sun hats, she will be stylin' this summer! She got a beautiful ornament and then came the big one... this little lady has become quite good at unwrapping packages and the paper was off in no time. Inside was the cutest " musical rocking ladybug"... we all know Georgia loves music, loves to move and she was my little ladybug for Halloween! We set her on it and instantly she was rocking back and fourth, all smiles. This morning when Georgia got up I took her to the living room, she pointed at her ladybug so I set her on it... she had one had on the handle and the other up in the air rocking away. Way to go Grammy and Grandpa, home run!
Brian and I were so excited that we got a fancy new Canon camera and lens... now all I have to do is figure out how to use it!
Thanks to my parents for a wonderful dinner, making it a special Christmas for us and for being so amazingly supportive, you are making this road a little easier and we love you.

BIG present

Georgia on her ladybug

She also got a dancing duck that sings If you're happy and you know it..

she was really taken with it... thank you Ken & Dottie!

True to form... the box is just as fun as the gift!

This week turned out to be far more mentally and emotionally challenging than I'd planned. Monday morning we arrived for our 4+ hour infusion of IgG and about two hours in Georgia had a bad reaction, breaking out in a rash all over her body. They had the doctor come down to take a look and in the five minutes it took for her to get there it was spreading. They stopped the infusion, gave her a dose of steroids and it eventually resolved. It is so hard to be somewhat of a spectator in all of this... I find myself wanting to scream at these people that this is MY daughter and I get to decide what she is given... the transplant team doesn't work that way.
Tuesday we only had one thing on our schedule, our "arrival conference" with the attending transplant doctor. We sat in a small room filling all six chairs - myself, Brian, Leslie (step mom) and Kathye as well as the attending and a nurse. The information that was shared was for the most part things that I had heard before - how harsh this chemotherapy regimen is, what parts of her body could be permanently effect by it, how the transplant works, what signs they will be looking for to see if she is getting Graft Versus Host Disease... something they actually want to see signs of because they have no other way to look for Graft Versus Leukemia - something they want to have happen. They talked about how many medications she will likely be on for a year or more, that we will likely be giving her IV medication at home. The piece that was new was that we asked - so you're sure? You are sure that our healthy, beautiful, lively daughter has JMML? The tumor in her leg is dead, her bone marrow is improving... Is there a chance you should re-run all of these tests to re-confirm your diagnosis? Yes, this is JMML and no we will not be re-running tests was what the somewhat arrogant attending had to say. As more questions were asked and answered something was blatantly clear - the SCCA operates solely on worst case scenario, they give you the most extreme, most devastating data - there is no bad information followed by but a lot of people do well... there is no glass half full. At the end of the conference the attending turned to Brian and asked based on his understanding of the information given if he was comfortable going to transplant. I let out a little uh and then became quiet again. In my head I was screaming are you kidding you arrogant ass? Look, I get it there is no better place in the world to get a transplant, there are insanely intellegent people who work here but no, there is not one piece of information that I am comfortable with, nothing in this process is remotely comfortable to me.
Starting this process with the SCCA has been like getting punched in the gut multiple times a day all while trying to care for my 13 month old that no one cares needs a nap or is hungry or simply wants to move around. This week I have felt myself start to crumble, I am so afraid that if I let myself cry, I mean really cry that I truly won't be able to stop. This is too much, I don't like it, I'm not comfortable with it and we have to do it anyway.

Time continues to fly - Georgia, you are 13 months old! You amaze me everyday with your strong spirit and resilience. You have spent the last month gaining speed.. in crawling, cruising, talking and laughing. You have started to mimic what I do.. I cough, you cough, the other day I caught myself saying uhhh (wondering what I was doing) and all of a sudden I heard you say uhhh.. looking at me smiling. You know how to throw a ball, you still love waving and saying uh-oh (still emphasizing the uh) and I think I have heard hi and no but you aren't using them regularly. Your mobility astonishes me, no one would ever guess that you've had three biopsies on your leg and had been through chemotherapy such a short time ago. Keep going Georgia, you're going to go far.

Already talking on the phone

Let's go!

So fancy with your purse

The big glass of red wine combine with the fact that we'd made it through our first few days with the SCCA was the right combination to cure the headache which had been nagging me for several days. At last two days free of doctors and tests and time to enjoy my baby girl.
We found out that Georgia's transplant will be pushed back a week due a scheduling issue on the donor side so now we'll check in on January 9th and she'll have her transplant on January18th. More time at home and not starting the first day of a new year in the hospital are fine with me but it adds to the stress of waiting.
Although most of Georgia's blood work looks great her IgG level is lower than they'd like to see for someone going into transplant so on Monday she will receive and IgG infusion - they are antibodies found in your blood. This process will take 4+ hours... not exactly what I had in mind for kicking off a new week.
But back to the red wine... we'd set up a small fake Christmas tree to get ourselves in the holiday spirit while still keeping Georgia safe but it wasn't cutting it for Brian. After we got home Friday he headed out and got a real Christmas tree to put on our back deck. We all bundled up and took part in really getting Christmas started.

Everyone had a beverage

Daddy getting the tree just right in the stand

G and Mom

I put the lights on

Ta-da!

Life with a one year old is so fun and so busy! Georgia has not let the events of the past few months slow her down a bit, she is crawling at lightening speed, getting more comfortable cruising furniture and has stood on her on several times for a few seconds. She is becoming more and more interested in her toy walker and is discovering new territory. She is very pleased with herself and I have noticed my hand being pushed away more and more... my independent girl is growing up!

Helping with some holiday baking

Now, which one should we use?

Oh that's ok mom, I can get it myself!


Now what is this?

Here is Georgia on her Little Mermaid car that she got for her birthday..

Mom, only babies eat little bits of apple...

This week we made our official transfer to the transplant team at the SCCA. Yesterday we started our day at registration where we were given a green card, which looks like a credit card that holds all of Georgia's information, we were told that we have a "mailbox" and were then sent up to floor six - the transplant floor. I guess I assumed that the environment would be more like Children's Hospital... more kid friendly or maybe at the very least I was expecting to see another kid. We arrived and were surrounded by adults, some younger than others but all decades upon decades older that Georgia - this served as a reminder of things that still linger in my mind, how are we here, she is just a baby, this isn't fair.
On this large floor we were sent to one of four pediatric rooms. After waiting for a bit Georgia was getting antsy so Brian took her for a little walk... all of a sudden I heard from several voices, "Georgia!" "Oh the infamous Georgia"... all people who'd seen Georgia waving from our room at Children's during our last stay - she would see the transplant team rounding on other patients and was always full of smiles for these people who had only ever waved back at her. We finally met with a nurse, physicians assistant, we went over our schedule for the week and were given a tour of the facility. Georgia was such a trooper, again being poked and prodded by so many people then sent to the lab for a blood draw - the maximum draw for her weight. Today we started the day off with an EKG, 10 stickers with 10 clips attached and she had to be perfectly still for 10 seconds... 10 seconds is a very long time for a one year old. Fortunately the ABC song did the trick and we got a good read. We were supposed to meet with the attending physician to go over all of the nitty gritty details of transplant but 45 minutes before our meeting he had to cancel because he wasn't feeling well... the last thing we need is for Georgia to get sick from the transplant team who cannot impress enough the importance of Georgia's health going into transplant.
Tomorrow Georgia will have her fourth bone marrow aspirate as well as a lumbar puncture, both are done to test for the presence or absence (in her spine) of JMML.
This week we also learned a bit more about our donor - first and foremost he has agreed to donate and donate bone marrow (he has the option of stem cells). He is from somewhere in Europe but we don't know which country. If we had an American donor and if both parties signed consents we could contact them a year after transplant. Other countries have different laws, some will allow you to contact after two or three years but some never do - we will have to wait and see.

Knowing Georgia couldn't go and sit on Santa's lap this year my dad and Leslie turned their house into a mini north pole... complete with SANTA! They scrubbed their house to make it germ free, rented a Santa suit and decorated like no other - it was perfect. As to not scare Georgia my dad had the suit on when we got there but left the beard and hat off... as soon as it went on Santa became a little scary. I actually feel like we have the exact representation of what would have happened if we'd taken her to see Santa himself. The funniest part was that immediately after my dad took the suit off and was in regular clothes again she was all smiles for Grandpa. Thank you so much Grammy & Grandpa it was a fun evening that means so much to me.

Ummm what is going on?

Get me outta here!

Mom, you're not fooling me, I'm still on his lap!

Ahh, so much better just the two of us

Oh, I can open presents??

Mr. & Mrs. Claus

The Handsakers

Checking out the tree post Santa suit

Thanks Grammy & Grandpa!