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!

The next several weeks are starting to take shape and our plan for transplant is coming together. We received word that the intake process will start next Wednesday and run over a two week period. It will involve blood work, a physical, an EKG, another bone marrow aspirate, chest x-ray.. we will meet with the attending transplant doctor, dental and nutritional specialists all in an effort to basically prove that Georgia is ready for transplant. Once all the test results are in we will review them with the doctors right around the end of December. The plan is to have us check back into the hospital on January 1st, start seven days of conditioning (chemotherapy) to rid Georgia of her current bone marrow and any cancer cells that are still present, she'll have a day of rest and if all goes accordingly she will receive her new bone marrow on January 10th.
In going over the schedule with our SCCA coordinator I asked about the donor. She told me that Georgia actually has FOUR 10/10 donor matches but they have selected one based on some additional information. She said this person knows they have been identified as a match for a baby and this week will be told that they have indeed been selected as the donor of choice. She was able to tell me that the donor is a 25 year old male who has the same blood type.. this news was encouraging as the doctors had told us early on young men were typically the best candidates. Nothing is set in stone, he will still have to have a physical and ultimately agree to be the donor but I have faith that this is all going to come together.
When I was reading over the material we just received regarding the transplant process I flipped to one sheet that read in bold print.. Welcome to the Pediatric Transplant Program at the SCCA! I am wondering if the exclamation point is supposed to get us psyched up.. the pep rally approach isn't really working for me but I know we are in the best hands, people literally come here from around the world. I guess I will try and think of it as.. Good Riddance JMML, We're Moving On!

The past two days have felt long and have come with an overwhelming amount of information. Yesterday my stomach was in knots all day anticipating our meeting with the oncology radiologist - why are they talking about radiation on her leg if the biopsy was free from tumor cells, will it effect her growth plate, why does she have to be put under essentially 11 days in a row... all of these questions and more were swirling around in my mind. We arrived and waited, walked around, and waited, I thought about what questions I wanted to ask, and waited.. the doctors were over an hour late seeing us. I had never met the radiologist so when two men walked in the room I assumed one of them was the Dr. Douglas we were meeting with.. they came in, made a quick introduction ( both residents) and stared talking about radiation, Georgia's condition, recent biopsy and finally we looked at him and said, so you're not suggesting radiation? We had been told by several attending doctors over the last couple of weeks that the recommendation that had been made by the SCCA transplant team was radiation, we were told dates she would receive radiation, the dose, and now was it possible that my wish, my prayer was coming true that they were telling us that they weren't recommending it.. yes. After a very confusing conversation with the residents we were finally able to talk with the head oncology radiologist, he said the benefits didn't out way the risks, that they were very pleased to see the biopsy results and how active Georgia is, that radiation to her leg would almost certainly shorten her leg somewhat... for the first time since all of this began I finally heard a doctor say "if this were my child"... he said, if this were my child I would not do radiation.
Today we had a long meeting at the SCCA, our first visit of many to that location. People come from around the world to receive transplants here, they literally gave the first transplant ever and the office is about 20 minutes from our house. The waiting room was filled with adults, not the lively group that I am use to seeing on the SCCA floor of Children's Hospital. We were shown to a room and in came one of the attending doctors on the Transplant Team. She was very nice, calm and seemed to asses us as she came in the room. I felt like we went into this meeting knowing quite a bit of information - or should I say more plainly, we'd already heard the big and bad details so I didn't have to put my head between my knees like the first time I'd heard them.
From a very high level transplant is like a reset button - Georgia's immune system isn't what we'd like so we're trading it in for a better model so to speak. For myself and Brian, we need to know it on every level - there will be seven days of intensive chemotherapy to rid her body of her current bone marrow, the new bone marrow will have to in graft over a long period of time, she will be on immune suppressant drugs for about a year (up to three years) the doctors will look for signs of graft versus leukemia (a good condition) and graft versus host (a bad condition). Every single thing in this process comes with a possible side effect - too many to list or remember. There are drugs that counteract the side effects of other drugs, pain medication, nausea medication, IV drugs and on and on. When we are done and home again we will resume life as it is now, in somewhat of a bubble, a cold that would give one kid a little sniffle could land Georgia in the ICU. We will be trained on giving Georgia IV drugs, she will be very closely monitored for the first year and assuming all goes smoothly the time between visits will become longer.
All of this heavy, heartbreaking information and Georgia was letting out her loud happy screams, smiling, waving and doing her latest trick - when I say hooray she raises both hands up over her head... she is thankfully totally oblivious to everything that is being discussed. Someday, long from now maybe she'll read this and understand that we will do anything, walk through fire if that's what it takes to cure our baby girl.
The AML tumor cells are dead and gone... watch out JMML, you're next.