Day +312

Since finding out that Georgia would be put on Prednisone I have been struggling with, well frankly, being pissed off about almost everything... what she can't do, what we have to do, with how much she understands and has to cry her way through anyway, it all has become much to much.  We have been in this battle for over a year now and I just thought we'd be in a different place by now.  A year ago my pesky optimistic side had me believing we'd be done with immune suppression and starting our new lives, post transplant with a new immune system running on all cylinders, we're not there.
Monday night I didn't sleep, anticipating our appointment at the SCCA the next day.  Since having her new NG placed Friday Georgia wakes up saying "line no, line away" and this continues throughout everyday so I was very motivated to get a taper started, we're done.
I was what I would say politely pushy with the dietitian when I brought up a taper, she said "she'd check with the team"... Well, I said, we've reached a point where we need to be done with this tube, it bothers Georgia a lot and it's time to see what she can do eating wise.  This is a part of this process that is particularly maddening to me... "let me check with the team?"... I would like to think that I still have some control over what happens in our lives, I don't have to call them at every turn to see what I can or cannot do with my daughter - it is highly irritating! 
In the end, the appointment went fine, we've started a taper and the plan is to be done with the NG feeds in a couple of weeks.  I told Georgia that we are working on making her line go away, I said, you need to eat and drink to help make your line go away... she promptly
walked over picked up her cup and took a drink then looked back at me like - ok now?  Such a smart girl.
We are in wait and see mode as far as GVHD is concerned, the goal is that her eating will pick up and that she will continue to gain weight, this will be a sign things are improving.  I talked to the PA today to clarify a few things as Georgia was really upset during our whole appointment - she's become wise to lab draws, doctors visits, all of it which makes this all the harder.  I told the PA how I view GVHD to make sure I was in the right mindset - it's not as if Georgia has a cut and we'll see if it's healed in three months, it has to do with her new systems living in harmony together... what Prednisone is doing is suppressing her T cells, basically telling them to calm down, the hope is that Prednisone will make them calm and keep them calm.  The next step is then to taper the Prednisone and hope that her T cells stay calm and that both her old and new systems can live happily together.  Only time will tell and there is nothing I can do to speed that up.  Everyone has been very clear that three months is the very minimum before a taper would be started.
One other detail that was confirmed is that again, we can't have a live Christmas tree - we still can't have any live plants in our house as there is a risk of mold infections, this risk was increased now that Prednisone is on board.  This won't change until she is off immune suppression all together.  It just makes me sad, these are the little pieces of this process that are reminders there is still a long road ahead.
I am hoping that once the NG tube is gone I will regain some sanity because I won't be up multiple times a night refilling her formula - sleep brings clarity.  I know though that my stress level will be running high for a while, Georgia will have a full work up in January complete a with bone marrow aspirate and biopsy, skin biopsy, dental and eye exam as well as a massive blood draw all to see how her little body is doing one year post transplant. 
We continue to be so thankful for the thoughts and prayers from so many family, friends and strangers.  Please, when you think of Georgia send her healthy thoughts, from her left femur to her gut and to all the blood running through her body.

Thankful

I can't lie, in the days leading up to Thanksgiving it was all to easy to come with a long list of things that I am not thankful for, right now life just seems extra hard.  With the addition of prednisone and at least a six month set back in tapering immune suppression I have found myself in a place that I have successfully avoided for the most part - I'm angry.  I'm angry that I can't give my daughter all of the things she wants, I'm angry that she now has four additional medications to take and I'm angry that it feels like we aren't gaining any ground.  I would like to tell the world to leave us alone, or at the very least go pick on somebody else.  I'm tired, beat up and feel like life continues to chew me up and spit me out all while I try and put on a brave face for my girl.
Yesterday I was thankful that although Brian had to work he had a Seattle overnight and we were able to have dinner together.  After I told Georgia that dada would be home for dinner she ran around saying "dada eat, dada eat."  We sat down to dinner, held hands and said Grace - Georgia was a bit confused at her parents holding her hands and closing their eyes at the dinner table but she sat quietly - we gave thanks for our family, the kindness so many people have shown to us and for a stranger, there is a young man in Germany who has changed our lives and we are certainly thankful for him.  What I am most thankful for is my daughter, she is the only reason I am able to move through this process.  For better or worse I always go back to being an eternal optimist and I'll get back there soon, I just need a break to be really mad at what's happened to our family.  The evening ended by Georgia's NG tube malfunctioning and we had to pull it out so for now my frustration continues - it has to get better soon... until then this little turkey will keep me smiling.

Currently Georgia has two favorite things - taking her pants & diaper off...

 and putting on her new cowgirl boots!

Georgia with her very first snowman

It's My Party!

Here are some pictures from the festivities yesterday...

 I'm 2!!!

 Georgia, Blake & Holden

 Sisters.. and two tired mamas!

 Georgia snuggling Holden

 Georgia's new boots

The best part of the party... playing with cousins!


Mama & G

Lauren

 My favorite little ladies

Hooray!

 The loot!

Happy 2nd Birthday

To my most amazing child,
Georgia the past year has been unthinkable in so many ways but I look at you today, my two year old and continue to be amazed at how resilient you are.  You've grown, you're walking.. running, talking up a storm, just a normal two year old who has had anything but a normal life.
You say "please" for things you want, although you don't understand that using the word doesn't automatically get you what you want.  You have also taken to saying "mine"... every time with a huge smile on your face, knowing it's a bit of a game.  I remember a comment a nurse made the night after you were born, she'd come in to check on you and said - This girl is a snuggler and she knows what she wants - this is still so true to this day.  You love to snuggle, I see you doing this more and more with your toys but you're almost always up for a snuggle with me.  You know what you want and your expanding vocabulary is making it easier to understand what that is.. you've become more independent, wanting to do things by yourself, but aren't afraid to ask for help when you need it.
Today we had your first official full-fledged birthday party complete with aunts, uncles, cousins, grandparents and some of our closest friends... we sang happy birthday three times at your request, and you had no trouble blowing out your candle two times!  This is the first time in more than a year that everyone has been together and you ate up every single second of it, when the last person was gone you starting asking for "more" of everyone. 
I love you with all my heart and soul, happy birthday and happy 10 months post transplant my love!

Day +299

Today we begin what I hope will put an end to GVHD and allow us to move forward.  As we start this new course I am reminded that not everyone is as familiar with a lot of the terms I use so I thought I would take a step back and explain what is happening.
With the recent biopsy results we know that Georgia has Graft Versus Host Disease, something that is common in transplant particularly when you have an unrelated donor.  Georgia's new bone marrow although still suppressed is "awake" in her body and aware that this was not its original home.. as the bone marrow is "looking around" at its new surroundings it doesn't always know what is good and what is bad.  The doctors have told us all along that they want to see GVHD, it is the only way they know that Graft Versus Leukemia might be happening... we want the new bone marrow to identify and attack any leukemia cells that might be present.  What is happening in Georgia's case is that her bone marrow, or immune system is attacking part of the lower half of her stomach called the antrum, this is the most common place to see GVHD.  Her biopsy showed apoptosis which is programmed cell death, something that shouldn't be happening in that area, her T cells are attacking her stomach - all contributing to why Georgia doesn't want to eat.
A typical course of prednisone would be 1mg/kg (of weight) everyday for about two weeks then taper to the same dose every other day for three months, then taper to 1/2mg/kg for three more months.  For Georgia things look a little different, we know she absorbed some of the other steroids that were considered "topical" (as opposed to systemic) so the hope is that a lower dose of prednisone (a systemic steroid) will do the job.  Georgia is on 1/2mg/kg (or 6mg) every other day for three months then we will likely have a three month taper - this is the best case scenario.  The hope is that this is what her body needs to calm down the T cell activity and give her immune system time to adapt to its new home.. for some people this takes years, I am hopeful for Georgia that will not be the case.
As with everything in this process this isn't straight forward, prednisone comes with risks and additional medications.  I am already working on a list of questions for our next appointment.  One thing we know for sure is that prednisone further suppresses Georgia's immune system and puts her at a higher risk of infection - any fever will come with a full work up and she will need to have blood draws every two weeks. Brian and I have been criticized for some of our choices around what it means to keep Georgia safe but with the most recent news I have only become more steadfast in our approach, all with the blessing of her doctors.
The bottom line is this, I am afraid of prednisone, just one day in and I've already seen a rageful Georgia, totally unreasonable and very upset.  I am hoping that I have the mental strength to get through all of this, I know there will be frustrating days ahead but more than anything I feel so sad, I want to be able to give Georgia so much more - right now, not when all of this is done, not in the near future... now. 
So now I will ask for help from all of you - when you are sending love, strength and prayers to all of us, send them to Georgia's donor cells too... there is researched proof that cells (living things) do better when "loved" versus being neglected, we want these cells to feel loved, safe and comfortable in their new home.

Here is a little video of what we're currently focused on...

Day +298

I can't stop crying, I was so sure that we were seeing a light at the end of the tunnel but a phone call today told me I was wrong.  This afternoon the SCCA called, the biopsies confirmed that Georgia has GVHD in her stomach, she starts prednisone tomorrow.  I feel so defeated but mostly so heartbroken for my baby girl.  All she wants to do is play with other kids, prednisone puts her at a greater risk of infection... I want to move on from this nightmare but the best case scenario is that she'll be on it for six months, then wait at least a month before being able to taper her immune suppression.  All of this just five days shy of her second birthday.  When will my child be able to be a child and not have to put on a brave face for constant blood draws, doctors visits and tests?

Day +296

The past two weeks have been exhausting in every way and we still don't have a definitive answer, I have come to believe we aren't going to get one.  After our hospital stay we were seen at the SCCA for evaluation and a cortisol test - the thought was that perhaps Georgia's levels were low after being on steroids for so long, her symptoms seemed to match up.  The test required an IV to be placed, a blood draw, an injection of something that causes a "steroid response" then a blood draw an hour later.  Georgia was rightfully upset about being poked again and overall just wanted to be left alone.  That evening we heard that Georgia's levels were normal, I am so thankful that we avoided being put on other steroids to normalize her levels!  It was a good reminder that even though Georgia isn't feeling like herself her body is still doing what it should be.
Friday we had an endoscopy, I resisted this a little but ultimately knew it was the only way to know if this was a GVHD issue in her throat.  We checked in at 7:15am, she had another IV placed and was sedated.  I have always held Georgia while she's sedated, this process only gets harder as she becomes older and can tell us how upset and scared she is, crying mama me (hold me) and mama ba-bye... one of the nurses left the room while the IV was being placed, she told me later that she has grandchildren Georgia's age and was becoming too emotional to watch.
The gastrointerologist came out and let us know that Georgia had done just fine through the procedure and they were able to take biopsies of her stomach.  There were no obvious signs of GVHD but we will have to wait for the pathology results to know for sure. 
While Georgia was sedated it was suggest that we switch sides of her NG tube as to not cause calluses in her throat.  Every night when I hook Georgia up to her feeds I have to check placement of her line, this is done by using a syringe to push air in as I listen through stethoscope for a gurgle in her tummy, then pulling back on the syringe to get some stomach contents.  This is the same method they use after placing a new line, only problem was they emptied Georgia's stomach for this procedure so they weren't getting any return.  They said, we'll just do a quick x-ray to check for placement... I promptly said, no.  This started an almost three hour long process of, was the tube in the right place, what it would take to get a return  and why did I think it was such a big deal to get an x-ray.  In the past year, Georgia has been through more than most people go through in a lifetime, most of it was necessary - this wasn't.  Brian and I both feel strongly about minimizing her exposure to unnecessary medical procedures, doctors visits and without a doubt, any additional radiation.  In the end they had to replace the tube while Georgia was awake then we left for a bit to get her to drink and eat a little, this finally produced the results we wanted without any radiation. 
By last night Georgia seemed better, chatting, playing and doing a little bit of dancing.  Although we have labs next week the hope is we won't be seen by a doctor until the 29th.  We need some time to rest, heal, play and most importantly have a very happy 2nd birthday one week from today.

Day +292

I realize it seems odd to say Georgia was never a sick kid, but she wasn't.. never a cold, never the flu, nothing until all of this started.  Over the past week I have been terrified, going back and fourth having no "norm" to guide me, do I have just a sick kid or is this something more serious?
Last Monday, Halloween we had clinic, Georgia threw up on the way there, I talked to the doctor about it.. her labs all looked great so we chalked it up to too much too early in the morning for her.  By that evening Georgia had thrown up three more times and was really tired, something was wrong.  I called her doctor in the morning and we both thought it seemed like a stomach bug.  The insane world that I live in has me calling a pediatric oncologist to discuss such matters.
By Tuesday Georgia was still sick, Wednesday her stomach symptoms seemed to be getting better but Georgia wasn't emerging from her sickness.. Thursday morning I called her doctor.  Georgia was sleeping all the time and crying when she was awake, grabbing at her head and obviously uncomfortable.  We agreed that she should be seen.  Two blood draws later we found out that Georgia was dehydrated - not surprising even though we'd been running pedia-lite through her ng tube.  She received two bolus doses of fluid in the clinic which is a little more than half a liter.  The hope was that the fluid would perk her up - no such luck.. instead she became puffy.  Georgia had been off of her ng feeds for most of the week since she'd been throwing up and didn't have much of an appetite, needless to say she was a little shaky on her feet.  The doctor asked us to have her walk, she didn't want to and was really unstable on her feet.  From there the discussion turned to what else we might be dealing with - first thought was viral meningitis.  We were sent from the Hem/Onc Clinic to the Emergency Department for a head CT to look for bleeding or swelling of her brain and to have a spinal tap - this is where I started to crumble.  Georgia has been through enough trauma, she has more than risen to the occasion and I wanted it to stop.  This was my first time back in the emergency department since the first night all of this began, not a place I wanted to return to.  The head CT was horrendous, she was wrapped and velcroed to a table then slid into a giant machine.. Brian and I were on either side of her but she was terrified.  All of this while the ED resident tagged along because he "wanted to watch"... from there she was sedated for the spinal tap and after she woke up we were sent to the SCCA floor to be admitted.  Back to the same place we'd been one year ago.
The morning came with more labs which meant more pokes for Georgia.  She was so upset to be in the hospital, becoming extremely upset whenever our hospital room door would open.  Her eyes were almost swollen shut and a new crop of residents were all to eager to start morning rounds.
Further tests were taken, they checked for cancer cells in her spinal fluid, they took five cultures of her throat because she'd started having trouble swallowing and was throwing up mucus.  Georgia made a little bit of progress, enough that I talked to the docs about waiting on an endoscopy to look for GVHD.  All tests came back negative so Sunday we came home, yesterday Georgia was a bit better, today really tired again. 
This could be a lot of different things - what I think and hope it is - I think Georgia did have a stomach bug, which would be hard enough for anyone with a normal immune system to fight off, then I think she became dehydrated and under-nourished which caused her body to lose ground.  I think she is now fighting a new virus, something in her throat and she needs time and rest to be well again.  All of this may be true, but in Georgia's life a possible virus leads you to a head CT and a spinal tap, days in the hospital and continued follow up from her teams of doctors.
Tomorrow we go to the SCCA to be evaluated by her Continuing Care Team, they will be running tests and looking for indications for GVHD. 
Please send healing, healthy thoughts to Georgia - think of her as the Super Girl that she is and help us to move past this to a strong, healthy place.