Last night we had a visit from Diana & Nancy, both very good friends of my mom.. Diana did some cranial sacral work on Georgia which instantly relaxed her.. this is the second time Diana has worked on her and the second time Georgia has slept through the night, through vitals and all. Nancy is a musician (Grammy award winner at that!) and came to play some music for Georgia. It made me feel so happy to see these two women who are so warm, gentle and maternal loving my daughter. Georgia got such a kick out of the music, she was rocking back and fourth, clapping her hands and joined in with a little shaking of some maracas!

Living in a hospital is such an odd experience, you are here because you are sick, one thing that everyone knows a sick person needs is rest but that is the one thing that we can't seem to get. Georgia has her vitals checked every four hours (assuming all is well) round the clock, then they check her IV every two hours.. needless to say that the vitals taken at midnight and four in the morning wake her up and the visits in between wake me up too.

I thought I would give you a glimpse of how our days start, the team comes in and the resident starts by saying "this is Georgia Handsaker, our 10 month old female ... presenting symptoms of both JMML and AML, ... today's plan is... All of this while I am sitting in my pj's!

Grandpa was here for the meeting today and took this pic

I'm mean really guys I know I'm cool and all but this is a little much!

Georgia's surgery went well today, she had her catheter placed in her chest and an ultrasound on her heart - they kind of chemo they are proposing can be damaging to the heart so they want to know where they are starting from. After surgery she was wheeled in a crib back to our room.. I was happy that she wasn't upset but heartbroken that she might be getting use to all of this. I scooped her up and held her in my arms until she fell asleep then cried.. this is all so much to take in and we aren't even at the starting line yet. I am terrified for what's to come. Tomorrow is our "treatment plan meeting" or as I like to call it our Georgia Cure Plan meeting.. grandparents, one of her aunts, and her pediatrician will all be there.

It is with renewed spirit that I am writing today.. hearing medical terms, living in a hospital and trying to wrap your brain around the fact that your world has been turned upside down is daunting to say the least. After a visit with a dear friend (also friend of my moms) yesterday evening that helped me find my center again. If I lead with my head I am terrified of all of the information coming my way, if I lead with my heart I am sick with grief for this situation, but if I lead with my gut.. my real compass I KNOW we are going to be just fine. That said I think we are getting ready to walk through fire but we will come out the other side stronger and if it's possible even more in love with our daughter.
A long time friend has been sending me quotes that have helped me through these days.. a recent one that seems to fit just right is from Winston Churchill.. "If you are going through hell, keep going."
We met with the Attending doctor who specializes in Georgia's type of cancer (more than Leukemia) and she gave us the most clear information we've had to date. The picture is still not clear and we will be taking careful steps to make sure we are heading down the right path. They still can't find another case where someone has presented with the symptoms that Georgia has but if you look at it in just a slightly more general setting there are about two in a million a year.
Today Georgia had another bone marrow aspirate, bone marrow biopsy and spinal tap as well as some DNA testing to help lead us to the answers we are still seeking.
A lot of people have offered to get tested to see if they would potentially be a bone marrow match for Georgia .. I am asking questions about that and as of right now it sounds like people would just have to sign up to be a general donor which would go into the World Bank that they are looking at. I will find and post the website with the correct information when I have it.
Tomorrow is a ultrasound of her heart and insertion of the Hickman catheter - essentially surgery. Friday our Oncology team is meeting with the transplant to discuss the plan moving forward. After that meeting we will have a meeting to hopefully come up with the Georgia Cure Plan.
Again, I am overwhelmed with the support everyone has shown, I can't tell you how much it helps us. There have been countless offers to bring us anything.. that time isn't now but it is coming. We need a little more time to see what path we will be on then we will have a clearer picture of the help we need.

"I have never seen it take this long to get test results" is what I was told by a second year resident yesterday. They are doing studies on Georgia's DNA to get to the bottom of this but the picture is becoming clearer. By last night we were told that although the final pathology results are pending they are almost certain that we are looking at Leukemia..that is the first time I have typed that word and my hands are shaking. The next step is to figure out what type, they have narrowed that field to two and will need to do further testing to determine the next steps. The treatments are vastly different for these two. We have been told to anticipate being in the hospital for the next month.

Even with narrowing to two she is still puzzling the doctors and they have reached out to other experts around the world to see if anyone else has seen the combination of symptoms that Georgia is presenting. Tomorrow there will be another bone marrow draw, Thursday they are going to put in a Hickman catheter and we are hearing that likely Friday she will start chemotherapy. There is also a good possibility that we are going to need to do a bone marrow transplant. Because Georgia doesn't have a sibling they will go to the world donor bank to try and find a match. Unfortunately family isn't usually a good match. The future also will likely hold blood transfusions, we have started to encourage people to donate blood - you can't donate specifically for Georgia but it will help.
My heart is broken.

I am overwhelmed with gratitude, the out pouring of love and support for our family has been amazing. I know that so many have had said prayers since finding out about what we are going through and I was blown away today when I heard from so many friends who said that their entire church was praying for our sweet baby girl.
This weekend was quiet as far as doctor visits. I am happy to report that today was the second day that Georgia has not had a fever and her white blood cell count is down (although doc says it's because of her fluids I am choosing to believe otherwise) and we have enjoyed laughing with our girl who resumed dancing (wiggling around) smiling and waving this weekend.
It is hard to believe that anyone who has to stay in a hospital has to share a room but especially kids. We had our own room for a couple of nights but had a two month old roommate and her family as of yesterday. It sickens me to think that poor little baby is here getting chemo and is also frustrating that two babies are sharing a room because that meant little sleep for Georgia today. By the end of the day she was exhausted then we discovered her IV was shot (again) so we were off to the "Treatment Room" to get a new one. Our smart girl instantly knew where we were when we walked through the door and started crying then moments later threw up because she was so upset. Fortunately the nurse was able to get an IV in her foot quickly so now she is sleeping.
Tomorrow is a big day and the only thing that matters is that we are going to beat whatever is laid our in front of us.. period.
Again, I can't tell you how much the love and support means to us, it helps to know there are so many amazing people all over the world (literally) praying for our girl.

More pictures

Here are a few more pictures that auntie Leslie took of our gorgeous girl

And we wait

A puzzle, rare, mystery are all words that doctors have used to describe Georgia this week because of that we likely won't have test results to confirm a diagnosis until Monday or Tuesday. In the meantime here are a few pictures from the last couple of days.. our girl making the most of this situation and telling us all what she thinks.

Uh no thank you, I don't want a leg brace

Alright buddy, you and me.. we're gonna make a break for it!

Take that IV!