Day +132

I was certain I would be crying during our clinic visit today, I was so wound up before we left I thought I may explode. Again doing my clinic day dance of we can handle this but not that and please, please, please... No surprise the lab was backed up after being closed yesterday for the holiday so instead of having labs drawn at 1:40pm we had them drawn at 2:30pm, the exact time of our clinic appointment. Shortly after labs we were called to start the "clinic process" of weight, blood pressure and temperature. I knew Georgia's weight would be down and sure enough it was 9.8kg I was really holding my breath for her temperature knowing this piece could get us a room on the 3rd floor. As luck would have it, or maybe the gods knowing I might actually go crazy, her temp was normal... next up labs.
When we met with Georgia's doctor we talked about how she'd been battling a fever for several days and what that might mean.. no one likes that her weight is down but finding the root cause of this is no easy task. Georgia has a fever, this could indicate that she has a virus which can cause GVHD to flare which could speak to her not wanting to eat.. or could it be that one of her immune suppressants was not at a therapeutic level and her system is reacting to this - once it is up (hopefully later this week) will that calm things down? Still waiting for labs to come back we were free to wander the halls until our doctor returned.. we circled the clinic floor so many times I thought I might get dizzy. Finally we got the news that her labs looked good, improved in fact from last week.. her liver enzyme had gone from 245 to 74 on it's own! This, in the words of our doctor "bought us another week" if Georgia's weight continues to drop then she'll consult with our SCCA doc to see if he wants to repeat her endoscopy or put her back on the steroids she's been tapering.
I felt lighter, relieved and able to muster up motivation to do all I can to put weight on my girl in the coming week. Just before we left our doctor said, I keep meaning to ask you where you came up with the name Georgia Claudia... she said I was charting the other night and stopped and thought, what a great name! I smiled and said, I can't remember where I first heard Georgia but I loved it.. we had two girl names picked out and for at least 80% of my pregnancy I thought Georgia would be Lily (Lillian) if she were a girl.. after a few complications and a tough labor I couldn't help but think this isn't a soft sweet Lily, this girl isn't afraid to let us know whose calling the shots.. she's Georgia.. and Claudia, well I said, that was my mom's name. This was a good reminder to me of who is fighting this battle and how strong my Georgia Claudia is.

Day +130

I think the hardest part of this is that my baby is sick and I can't make her better. Her fever has been up and down all weekend.. just when I thought it was gone and I'd gone back to being stressed about her lack of eating it was back again this morning. Today we battled the fever and have so far kept it at bay, the eating continues to be challenging - I am a short order cook, I bribe her with trips outside to see the neighbors dogs, I walk her up and down the street because she like to be outside and I still can't fix it. When will this be easier?

Day +128

The thought of going back into the hospital is literally nauseating to me. Yesterday Georgia was a little cranky so I took her temperature, I was shocked to read 101.2. I panicked, told Brian, we referred to our "what to do" sheet from Children's and read that we should call for anything over 100.9.. dammit. I called and left a message for the triage nurse, by the time she called me back her temperature was down to 99.3.. ahh I thought, we dodged a bullet. The nurse said that it didn't matter that her temp was down, she'd officially spiked a fever which bought us a trip to Children's for blood cultures and an evaluation. By the time we arrived Georgia was at a normal temperature and showing off her dance moves. I didn't get the sense that many people are sent home once you come in for a fever but since she seemed to be doing so well, after getting her blood counts back and consulting with our SCCA doctor we were free to go - this of course on the stipulation that if she spiked another fever or anything grows back in the blood cultures we would certainly be admitted.
Georgia took a nap while Brian and I talked about how we can't go back in... it's not even the day to day living in the hospital, it's the constant critique of everything - diapers, calories, temperature, counts... I can't do it. There is a large part of me that worries that the world is going to say.. wanna bet?
I'm tired and scared, I want to feel like we're moving forward and that Georgia's system can handle this but I don't know if that's true. All of this is a constant reminder of how much her little body has been put through and that is incredibly painful. There are so many things that I want to protect her from, I think it's natural for a parent to feel that way.. cancer and a bone marrow transplant were never on my radar.
My bag is half packed but I am hoping and praying that we can evade the boogie man that I feel like we are constantly running from.

Day +125

Yesterday Georgia had her routine clinic appointment, her weight had dropped her last two appointments but I went in feeling confident we'd at least held, maybe... just maybe put on a little bit.. no such luck Georgia's weight has gone from 10.29kg, 10.14kg, 10.11kg and yesterday it landed at 9.96kg - my stomach sank. I knew this meant a conversation about GVHD. I have been so critical of her eating - not so much as to what she is eating but in terms of the volume.. like a typical toddler it fluctuates but if she has a "light" day the next day she usually makes up for it.. she'd eaten two hard boiled eggs in a row the day before! During clinic visits you show up for labs first then have your actual appointment with the doctor about an hour later. As we wandered the halls waiting to see our doctor I tried to keep Georgia happy and distract myself.. all of a sudden I found myself in a panic.. we can deal with the food stuff, maybe a different taper ... but what about her other numbers. Each week I do this little dance.. we'll take this over that... or everything will be okay as long as... essentially I hold my breath until I see the doctor. Yesterday she came in and said "how are you guys?".. I looked at her and said, you tell me... Georgia's red blood, white blood, platelets, ANC were all fine, her ALT, a liver enzyme had gone from 140 last week to 245 - this is concerning. Her liver has been and continues to be beat up by chemotherapy and now several of the medications she is on.. this is one possible explanation, the other is liver GVHD.

Today I am waiting for a call from our Children's doctor, she was going to touch base with our SCCA doc who also specializes in GVHD to see what he'd like to do.

There is so much of me that is frustrated and at the same time I find myself going.. did you really think it would be that easy? I want us to taper these medications, have her system respond normally and move on.. not so fast. Slowing the taper isn't the end of the world but I still have bouts with just wanting to complain to someone how I want my life back.. I want to take Georgia to the park and play dates, to talk about discipline and milestones... not GVHD and a steroid tapering schedule.

18 Months Old

This month has been big one for you Georgia - about two weeks ago you decided to officially walk! Everyday you are becoming more and more steady on your feet and you're very proud of your new skill.

Last week we went to a speech and physical therapist to get a baseline of where you are post transplant. We first met with the speech therapist who said it was so fun to evaluate someone who is doing so well - you scored high/above average for the 12-18 month category and are already in the middle of the 18-24 month range! For physical therapy you are right on track with your fine motor skills and on the low end of normal for gross motor - this all makes sense, gross motor was really the thing that was taken away from you all that time in the hospital. No additional help is needed, just practice and a little more time - I have a feeling you'll be running soon! All in all very impressive considering you were evaluated according to a test that is given to kids that have been allowed to just be normal kids!
This is the first birthday post this year where I can look back at the month and we haven't spent a day in the hospital.. that feels good. You are as sweet as you are opinionated and I can't wait to see what's to come. I love you Georgia girl!

Here are a few pics from this month:

Wearing your "beads of courage".. you've earned every one (and are still owed a few)

Setting up for a tea party

I guess you're expecting quite a few people

Tea wasn't the only party you had this month...

Family Photos

Today the pictures from our Day 100 photo shoot arrived, I want to send a huge thank you to Michelle Enebo for her generosity, creativity and incredible talent, I will always treasure these pictures. Here are a few of my favorites.. as well as our new blog opener which captured Georgia mid wiggle dance.

Happy Mother's Day

Today I had a wonderful low key day with my two favorite people... this afternoon we took a walk down on Alki which included all three of us doing some walking and lots of giggling from Georgia... it was a great day.

Hello 34...

Brian surprised me and had coordinated a few of my girlfriends to take me out dinner for my birthday... even though they said there weren't any reservations available our good friend Matt was able to get us in to Cuoco, a new restaurant in town. I had the martini I'd been talking about having for months and enjoyed the perfect night out with some wonderful friends...

Megan picked me up for our night out

Georgia had a little chat with us before leaving

Thanks for a great night!

Here are a few pics of my favorite little person...

When I wake up in the morning I'll be 34, there's no getting around it, that is the age of a grown up. I am certainly ready to leave 33 behind but there is a large part of me that thinks I'm still 29.
To date 33 has been the hardest year of my life but also one that taught me a lot about who I am, what I will stand for and what is important to me. I spend less time worrying about what others think and more time focusing on the simple pleasures I use to miss. Over the last several months some relationships have strengthened while others have been damaged. I have pushed my body and mind further than I thought possible and have greatly expanded my vocabulary. I have more wrinkles but care less about them and at the end of the day I just want peace for my little family. I have been commended for being the mother that I am but I truly believe that anyone in my shoes would be doing the same for their child.
My birthday this year falls the day before Mother's Day so naturally I have been thinking a lot about my mom. So much of who I am today is because of her, a parenting teacher by trade she loved being a mom and so do I. She would have so enjoyed seeing her daughters be moms themselves but to be a grandmother would have been sheer joy.
I have high hopes that 34 will be an uneventful year, meeting more milestones and moving toward our new normal. I look forward to getting back to just being Georgia's mom and getting caught up on some things we've been missing.

Day +104

The past few days have felt like a lovely little bubble of time.. we were officially discharged from the SCCA on Friday, had a nice weekend and yesterday had our first appointment back at Children's Hospital where our doctor said Georgia is doing great. This is the same doctor who has literally been with us since day one - she was the on call Oncology Attending the night we were in the Emergency Department, she also happens to be the oncologist who specializes in JMML. This doctor gets me, she has said on more than one occasion if that every time I met with her I yelled and screamed at her she would understand... and how she didn't know how true the statement "I would throw myself in front of a bus for my children" really was until she became a mom. I felt a great sense of ease knowing that we were going back into her care.

Georgia started a taper on three of her medications on Sunday, the two steroids that are treating her GVHD and one of her immune suppressants.. this is where my worry starts to creep back in, I am again tracking every bite, psychoanalyzing her fussy times and trying to remain calm. If we can successfully follow the taper schedule over the next several weeks we will be in a very good place, right now I am just watching for her body to let us know what it is ready for.

Just before we were discharged after transplant I was contacted by a photographer who had heard about our blog through a friend and offered to take pictures for us.. not knowing what our clinic schedule would be I suggested a Day +100 photo shoot, feeling that the milestone certainly warranted something to commemorate it. Today we made that happen, the weather held, Georgia turned on her charm and away we went.. I will see the photos in the coming days but the photographer, Michelle Enebo sent me one sneak peak.. this was an idea that she had, a special way to honor where this journey began and I love the way it turned out.